SURVIVE and THRIVE: Transforming Care for Every Small and Sick Newborn ISBN 978-92-4-151588-7

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SURVIVE and THRIVE Transforming care for every small and sick newborn SURVIVE and THRIVE Transforming care for every small and sick newborn SURVIVE AND THRIVE: Transforming care for every small and sick newborn ISBN 978-92-4-151588-7

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Printed in Switzerland CONTENTS

FOREWORD...... v ACKNOWLEDGEMENTS...... vii KEY ABBREVIATIONS...... x KEY MESSAGES...... 1 EXECUTIVE SUMMARY...... 2 CHAPTER 1: NOW IS THE TIME TO TRANSFORM CARE FOR NEWBORNS...... 11 Who are the most vulnerable newborns?...... 14 Visionary strategies and frameworks...... 14 Lessons from the past...... 23 CHAPTER 2. WHAT THE NUMBERS SAY...... 31 Survive: end preventable deaths...... 33 Thrive: ensure their health and well-being...... 43 Transform: human capital, societal response and health systems...... 46 CHAPTER 3: DELIVER THE CARE THEY ARE ENTITLED TO...... 53 Coverage with quality, dignified care...... 55 Organizing services by level of care...... 59 Who provides care?...... 66 Ensuring access to quality care for all without discrimination...... 69 Newborn health in humanitarian crises...... 73 CHAPTER 4: ENSURE THEY THRIVE...... 81 What does it mean to thrive?...... 83 Effective interventions to promote development...... 84 Screening and monitoring...... 87 CHAPTER 5. USE DATA FOR ACTION...... 91 Which data are needed by health system level?...... 93 Opportunities to improve and use data now...... 102 Data for action: priorities...... 104 CHAPTER 6. IMMEDIATE ACTION IS NEEDED...... 109 Lives-saved analysis...... 111 Reaching the SDG target...... 112 Closing the “quality of care gap” with special and intensive newborn care...... 113 Impact on major causes of neonatal mortality...... 114 Cost of inpatient care for small and sick newborns...... 116 The path to 2030...... 116 GLOSSARY...... 128 ANNEX 1: LIVES SAVED TOOL (LIST) ANALYSIS METHODS AND RESULTS...... 131 ANNEX 2: SCREENING AND MONITORING...... 138 ANNEX 3: LIST OF INTERVENTIONS...... 143 ANNEX 4: LIST OF COUNTDOWN TO 2030 COUNTRIES INCLUDED IN THIS ANALYSIS...... 148

iii

FOREWORD

Just about everyone has experienced the joy that a healthy newborn child brings to parents, families and communities. But the arrival of a newborn who is small or sick often results in immediate worry and sadness. When the infant is at high risk of death or disability, these concerns can be a tremendous additional burden.

We remain firm in our vision of a world freed of that burden, a world in which every mother and newborn will survive and thrive. However, we cannot meet the health-related Sustainable Development Goals – and we cannot achieve universal health coverage or people-centred primary health care – without a strong and growing investment in mothers and newborns. This report focuses on inpatient care for the most vulnerable newborns: the small and sick.

The launch of the Every Newborn Action Plan at the Sixty-seventh World Health Assembly in 2014 coincided with a period of great progress. The global neonatal mortality rate declined from 31 deaths per 1000 live births in 2000 to 18 deaths per 1000 live births in 2017. But three years into the era of the SDGs, we are still far from our goal of reducing newborn deaths to 12 per 1000, or less, by 2030. Bending the curve further will require a laser-sharp focus on reorganizing health systems to provide quality care, and continuity of care, for newborns – especially those who are critically ill.

To that end, every pregnant woman and every newborn, without exception, must have access to high-quality, affordable services before, during and after the time of birth. Accessible services are especially important for populations that are underserved and marginalized, including those living in humanitarian settings or in conflict. We also need more comprehensive “specialized and intensive” newborn care services – because services that are good enough for healthy newborns might not suffice for those who come into the world unwell.

While investments in all of these areas are critical, so is the level of investment. We can avert 747 400 neonatal deaths by 2030 in low- and middle-income countries by investing an additional US$ 0.20 per capita in small and sick newborn care. By providing quality intrapartum care to

v vi SURVIVE AND THRIVE: Transforming care for every small and sick newborn World HealthOrganization Director-General Dr Tedros Adhanom Ghebreyesus After all,newborns arenotjustbundlesofjoy for theirfamilies. They areapromisetothefuture. vision ofabetter world for every motherandnewborn. respond totheneedsofmostvulnerable.Inthisway, we can–andwe will–achieve the parents andotherpartnerstojoinusinsupportingcontinuedinvestment inhealthsystems that results. yielded important thisreport,weWith callupongovernments, healthprofessionals, are partofthejointeffort thathasreached these conclusions.Ourcollaborationhasalready We areproudthatourrespective organizations,alongwithnumerouscontributorsand partners, canmake andsociety inthefuture generation–andincontinuedeconomicgrowth. country nurturing. Supportinghealthy braindevelopment duringearlychildhood isthebestinvestment a andfollow-uphospitalization alsoneedstobedevelopmentally inthecommunity supportive and systems for well-functioning, family-centred, care. inpatientneonatal The careprovided during required toensureadequateandappropriatehumanresources,supplies,laboratoriesdata designating facilities for specialized andintensive newborninvestments care.Simultaneous are This reportisamuch-needed wake-up callfor investingcareand inpatientneonatal inquality measure quality, outcomesandimpact,topromoteaccountability. newborn tohelp highlightstheneedfortofacilitateplanning, accurateandreliabledata suchWith and thrive: resultsinmind,Survive transforming carefor everysmallandsick lives andprevent stillbirthseach year. 95% ofallmothersdelivering inhealthfacilities, we would, inaddition,save many mothers’ United NationsChildren’s Fund Executive Henrietta H.Fore Director ACKNOWLEDGEMENTS

The World Health Organization (WHO) and the United Washington, DC, USA; Fahad Siddiqui, Research Nations Children’s Fund (UNICEF) extend their sincere Analyst, Assistant Professor, Centre for Global Child appreciation to the following contributors who have Health, Sick Kids, Toronto, Canada, and Health Services made this publication possible. and Systems Research, Duke-National University of Singapore Medical School, Singapore; Steve Wall, Managing editors Senior Director, Save the Children, Washington, DC, Lily Kak, Team Lead for Newborn Health, United USA; Nabila Zaka, Senior Advisor Health, UNICEF, States Agency for International Development (USAID), New York, USA. Washington, DC, United States of America (USA); Joy Lawn, Professor and Director, MARCH Centre, London Expert Advisory Group School of Hygiene and Tropical Medicine, London, Ebunoluwa Aderonke Adejuyigbe, Professor, Obafemi England; Ornella Lincetto, Medical Officer, Newborn Awolowo University, Ile-Ife, Nigeria; Shabina Ariff, Health, Department of Maternal, Newborn, Child and Consultant Neonatologist, Department of Paediatrics Adolescent Health, WHO, Geneva, Switzerland; Georgina and Child Health, Aga Khan University, Karachi, Murphy, Fellow, Bill & Melinda Gates Foundation, Pakistan; Erica Burton, Senior Analyst, Nursing and Seattle, WA, USA; Judith Robb-McCord, Senior Director, Health Policy, International Council of Nurses, Toronto, Every Preemie—SCALE, Project Concern International, Canada; Olive Cocoman, Technical Officer, Partnership Washington, DC, USA; Nabila Zaka, Senior Advisor for Maternal, Newborn, Child and Adolescent Health, Health (Maternal and Child Survival Program) UNICEF, WHO, Geneva, Switzerland; Ashok Deorari, Professor New York, USA. and Head, Department of Paediatrics, and Director, WHO Collaborating Centre for Newborn Training and Research, First authors and content leads All India Institute of Medical Science, New Delhi, India; Pia Britto, UNICEF, New York, USA; Vivienne Chai, Queen Dube, Clinical Head of Paediatrics and Child MARCH Centre, London School of Hygiene and Health, Queen Elizabeth Central Hospital, College of Tropical Medicine, London, England; Louise Tina Day, Medicine, University of Malawi, Blantyre, Malawi; Assistant Professor, London School of Hygiene and Pablo Duran, Regional Advisor, Perinatal Health, WHO Tropical Medicine, London, England; Amialya E. Durairaj, Regional Office for the Americas/Pan America Health Consultant, Little Octopus, San Diego, CA, USA; Linda Organization Country Office, Montevideo, Uruguay; S. Franck, Professor and Co-Principal Investigator, Debra Jackson, UNICEF, New York, USA; William J. California Preterm Birth Initiative, University of California, Keenan, International Pediatric Association and American San Francisco, CA, USA; Lily Kak, Team Lead for Academy of Pediatrics, St Louis, MO, USA; Carole Newborn Health, USAID, Washington, DC, USA; Mary Kenner, President, Council of International Neonatal Kinney, Senior Specialist, Newborn Health, Save the Nurses, Yardley, PA, USA; Taona Kuo, Every Woman Children, Cape Town, South Africa; Joy Lawn, Professor Every Child, United Nations, New York, USA; Silke Mader, and Director, MARCH Centre, London School of Hygiene Chairwoman, Executive Board, European Foundation and Tropical Medicine, London, England; Ornella for the Care of Newborn Infants, Munich, Germany; Lincetto, Medical Officer, Newborn Health, Department Assaye Nigussie, Senior Advisor, Maternal, Newborn of Maternal, Newborn, Child and Adolescent Health, and Child Health, Bill & Melinda Gates Foundation, WHO, Geneva, Switzerland; Carolyn Maclennan, Seattle, WA, USA; Luwei Pearson, Deputy Director, Paediatrician, Consultant in international neonatal and Health Section, UNICEF, New York, USA; Ana Quiroga, child health, Alice Springs Hospital/Menzies School Council of International Neonatal Nurses, Buenos Aires, of Health Research, Alice Springs, Australia; Sarah Argentina; Peter Waiswa, Professor, Makere University, Moxon, Research Fellow, MARCH Centre, London Maternal Newborn and Child Centre of Excellence, School of Hygiene and Tropical Medicine, London, Kampala, Uganda; Salimah R. Walani, Vice President of England; Georgina Murphy, Fellow, Bill & Melinda Global Programs, March of Dimes, Arlington, VA, USA; Gates Foundation, Seattle, USA; Judith Robb-McCord, Ann Yates, International Confederation of Midwives, Senior Director, Every Preemie—SCALE, Project Den Haag, Netherlands; Willibald Zeck, Head of Global Concern International, Washington, DC, USA; Elaine Maternal, Newborn and Adolescent Health Program, Scudder, Director, Newborn Health, Save the Children, UNICEF, New York, USA.

vii viii SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Genna Naccache / Save the Children Research Programme, Nairobi,Kenya; Stefan Gebhardt, Mike English,Professor, KEMRI–Wellcome Trust and Adolescent Health, WHO, Geneva, Switzerland; Evaluation, DepartmentofMaternal,Newborn, Child Theresa Diaz,Coordinator, Epidemiology, Monitoringand KwaZulu-Natal DepartmentofHealth, South Africa; Health, WHO, Geneva, Switzerland; Ruth Davidge, Department ofMaternal,Newborn, Childand Adolescent Coordinator, Policy, PlanningandProgrammes, USAID, Washington, DC,USA; Bernadette Daelmans, of Public Health,Baltimore, MD, USA; KarenClune, Scientist, JohnsAssistant HopkinsBloombergSchool Chiesi, ChiesiFoundation, Parma, Italy; Victoria Chou, ofHealth,Malawi;Chavula, MariaPaola Ministry Adolescent Health,UNICEF, New York, USA; Kondwani Specialist,Maternal,Newborn, Statistics Childand Nancy Bolan, WHO LilianaCarvajal-Aguirre, Consultant; of Hygiene and Tropical Medicine,London, England; Hannah Blencowe, Professor,Assistant London School Health, The for Hospital Sick Children, Toronto, Canada; Zulfiqar Bhutta, Co-Director, Centre for GlobalChild Bergh, University ofPretoria, Pretoria, South Africa; Uppsala University, Uppsala,Sweden; Anne-Marie KC Ashish, UppsalaUniversity, Associated Researcher, Co-authors, contributors andreviewers Department ofMaternal,Newborn, Childand Adolescent of Carefor Maternal,Newborn andChildHealthNetwork, Washington, DC,USA; Maliqi, Blerta Team Lead, Quality Luchesi, Save andHealth), theChildren(ChildSurvival Seattle, WA, USA; Jane Lucas, WHO Consultant; Thiago Prevent Prematurity Preemie–SCALE, andStillbirth/Every Director/Chief Research Officer, Global Allianceto Pretoria, Pretoria, South Africa; James A. Litch, Executive Washington, DC,USA; EliseLewis, Universityof Program,Maternal andChildSurvival Save theChildren, Africa; NeenaKhadka, Team Leader, Newborn Health, ofthe University Western Cape,Cape Town, South USA; DebraJackson, SeniorHealth Advisor, UNICEF/ andMonitoringSpecialist,UNICEF,Statistics New York, College ofMedicine,Lilongwe, Malawi; LuciaHug, York, USA; Andreas Hansmann,UniversityofMalawi, Degefie Hailegebriel,HealthSpecialist,UNICEF, New Public PCI, HealthConsultant, Yangon, Myanmar; Tedbabe Health, USAID/India, New Delhi,India;Dawn Greensides, Health Specialist,Maternal,Newborn, Gupta, andChild Health-officer in charge, UNICEF, New Delhi,India;Sachin Specialist, UNICEFRosa,Chiefof Nepal;GaganGupta, Abt Associates, Dili, Timor-Leste; Sufang Guo,MNH Tanya Guenther, Evaluation andLearning (MEL) Advisor, Stellenbosch University, Stellenbosch, South Africa; Health, WHO, Geneva, Switzerland; Arti Maria, Head of Neonatology Department, Dr Ram Manohar Lohia Hospital, New Delhi, India; Ziaul Matin, Health Manager, Maternal, Newborn, Child and Adolescent Health, UNICEF, Dhaka, Bangladesh; Lori McDougall, Coordinator, Partnership for Maternal, Newborn and Child Health, WHO, Geneva, Switzerland; Jean-Pierre Monet, Technical Specialist, United Nations Population Fund, New York, USA; Allisyn Moran, Scientist, Epidemiology, Monitoring and Evaluation, Department of Maternal, Newborn, Child and Adolescent Health, WHO, Geneva, Switzerland; Susan Niermeyer, Senior Medical Advisor for Newborn Health, USAID and Professor of Pediatrics, University of Colorado School

of Medicine, Washington, DC, USA; Uduak © Allan Gichigi / Save the Children Okomo, Postdoctoral Research Fellow, Medical Research Council Unit The Gambia, London London School of Hygiene and Tropical Medicine, School of Hygiene and Tropical Medicine, Gambia; Consultant Neonatologist, University College London Dorothy Oluoch, KEMRI– Wellcome Trust Research Hospitals, London, England; Nicole Thiele, Vice Chair Programme, Nairobi, Kenya; Shefali Oza, Research of the Executive Board, European Foundation for the Fellow, London School of Hygiene and Tropical Medicine, Care of Newborn Infants, Munich, Germany; Danzhen London, England; Janna Patterson, American Academy You, Coordinator of the UN Inter-agency Group for Child of Pediatrics, Itasca, IL, USA; Anayda Portela, Technical Mortality Estimation, UNICEF, NewYork, USA; Aisha Officer, Research and Development, Department of Yousafzai, Harvard T.H. Chan School of Public Health, Maternal, Newborn, Child and Adolescent Health, Boston, MA, USA; Khalid Yunis, Professor, American WHO, Geneva, Switzerland; Geralyn Sue Prullage, University of Beirut, Beirut, Lebanon. Board Member, Council of International Neonatal Nurses, Alton, IL, USA; Pavani Kalluri Ram, Senior Editor/Report Manager: Kim Murphy, Consultant. Medical Advisor, USAID, Washington, DC, USA; Nathalie Roos, Technical Officer, Epidemiology, Monitoring and Communications: Olive Cocoman, Technical Officer, Evaluation, Department of Maternal, Newborn, Child Partnership for Maternal Newborn, Child and Adolescent and Adolescent Health, WHO, Geneva, Switzerland; Paul Health/WHO, Geneva, Switzerland; Amy Fowler, Rutter, Regional Adviser Health, UNICEF Regional Office Communications Advisor, USAID; Guy Taylor, UNICEF, for South Asia, Kathmandu, Nepal; Robert Scherpbier, New York, USA. UNICEF, New York, USA; David Sharrow, Consultant, UNICEF, New York, USA; Karin Eva Elisabet Stenberg, Administration: Seun Oyedele, UNICEF. Technical Officer, Department of Health Systems Governance and Financing, WHO, Geneva, Switzerland; The generous financial support of the Bill & Melinda Gates Cally Tann, Associate Professor in Child Development, Foundation and USAID is gratefully acknowledged.

ix x SURVIVE AND THRIVE: Transforming care for every small and sick newborn WHO UNICEF UNFPA UN UHC SNCU SGA SDGs RMNCH RMHC PPROM NMR NICU NEC MPDSR MISP MICs MDGs LMICs LiST LICs LBW KMC HMIS HICs G6PD ENAP EmONC LY DA CRVS CRC CPAP CEmONC Bubble CPAP BEmONC AARR KEY ABBREVIATIONS

Low-birth-weight

World HealthOrganization United NationsChildren’s Fund United NationsPopulation Fund United Nations Universal healthcoverage Special newborn careunits(specifictoIndia) Small forage gestational DevelopmentSustainable Goals Reproductive, maternal,newborn andchild health Ronald McDonaldHouseCharities Preterm premature rupture ofmembranes rate mortality Neonatal intensiveNeonatal careunit Necrotizing enterocolitis andresponse deathsurveillance Maternal andperinatal PackageMinimum InitialService for Reproductive HealthinCrisisSituations Middle-income countries Millennium Development Goals Low- andmiddle-incomecountries Saved ToolLives Low-income countries Kangaroo mothercare Health managementinformation systems High-income countries Glucose-6-phosphate dehydrogenase deficiency NewbornEvery Action Plan Emergency obstetricandnewborn care statistics Civil registrationandvital Continuous positive pressure airway Comprehensive emergencyobstetricandnewborn care Bubble continuouspositive pressure airway Basic emergencyobstetricandnewborn care Average annualrateofreduction Disability-adjusted life year Convention ontheRightsofChild ®

KEY MESSAGES

Transforming hospital care for 30 million vulnerable newborns,1 who are currently being left behind, is a smart investment which will unlock substantial human capital. Achieving the Sustainable Development Goals (SDGs), including universal health coverage (UHC), by 2030 requires action now to provide care for all small and sick newborns.

• Surviving: More than 2.5 million newborns – mostly those born small or sick – died in 2017 from preventable causes, most notably prematurity, complications around the time of birth, infections and congenital conditions. Some died because the care they received was of poor quality, others because they received no health care at all. To meet the SDG 3.2 target for newborn and child survival, countries need to transform special and intensive care in hospitals.

• Thriving: Every year, 30 million newborns require quality special or intensive newborn care in a hospital setting. These newborns can and will survive and thrive as productive members of our societies, provided they are given high-quality inpatient care at the right time and in the right place, including follow-up care and family-centred care.

• Transforming: Cost effective solutions exist for the main causes of newborn death and disability. To achieve UHC, there must be innovation through people-centred care, locally-designed technologies, financial protection, and parent power and partnership. Ensuring the recruitment, training and retention of adequate cadres of skilled nurses is particularly crucial. Social norms also need to be transformed such that newborn mortality is no longer considered as inevitable.

• Impact with equity: The lives of 1.7 million newborns could be saved each year by investing in care for every newborn, everywhere, including in humanitarian settings. While maternal and essential newborn care must be considered the foundation of care, the addition of special and intensive care services for small and sick newborns represents a smart investment. Such special and intensive services could save 747 400 lives, reducing newborn mortality by almost half, promoting child development and fostering economic productivity.

• Counting: Accelerating change requires improvements in the routine collection of data focusing on service coverage, quality and outcomes, in addition to ensuring better use of existing data, thereby promoting accountability and action.

Survive and thrive: transforming care for every small and sick newborn, focuses on the world’s most vulnerable newborns. It outlines the global problem, showcases progress, summarizes what can be done to transform inpatient care for small and sick newborns, and demonstrates the importance of data to guide investment and improve quality and equity.

The report contributes to achieving the objectives set out in The global strategy for women’s, children’s and adolescents’ health (2016–2030) (1) and builds on the momentum of Every newborn: an action plan to end preventable deaths (2). It presents a clear call to action to accelerate progress towards the SDGs to ensure every newborn has the chance to live a healthy and productive life.

1 In this report “newborn” refers to an infant in the first 28 days after birth.

1 2 SURVIVE AND THRIVE: Transforming care for every small and sick newborn universal healthcoverage required trajectory tomeetSDGtarget3.2; andprojection withevery newborn covered by Fig. ES.1 Scenarios to2030for 81high-burdencountries:currentnewbornrate trajectory; mortality 1 Newborns whoareborntoosoonorsmall, Every year, 30million newborns are atrisk to make morerapidprogress. injeopardy.SDG 3target Countries cantakeactionnow puttingmeeting thistarget, achievement oftheglobal ES.1).(Fig. However, somecountriesarefar from need toexpand provision ofcaretoreach allnewborns low as12 deathsper1000 live birthsby 2030),countries toatleastas mortality tries aimingtoreduceneonatal to end preventabletarget newborn deaths(withallcoun- most vulnerable–thesmallandsick. To achieve theSDG for everynewborn istransformed. This mustincludethe and promotewell-being for allatages)unlesscare The world willnotachieve SDG3(toensurehealthy lives care for newborns Now isthetimetotransform EXECUTIVE SUMMARY the first28days oflife (3). Approximately 80%ofthese year,Every anestimated 2.5millionnewborns dieduring become sick, areatgreatestriskofdeathanddisability.

less than 2500 gatbirth. less than2500 In thisreport, “too soon” refers tonewborns atlessthan37weeks’ gestation; “too small” refers tonewborns weighing 10 15 20 25 30 0 5 Source data: 2016 UNIGME2017 2018 (3) ; projectedtrajectorycalculatedusing Lives SavedTool. 2020 1 or who orwho 2022 highest attainable ofhealthandcare(6). standard Child (CRC) emphasize therightofeverynewborn tothe Articles 6and24oftheConvention ontheRightsof Every newborn hastheright to survive andthrive and cognitive growth (4,5). effectsdetrimental onanewborn’s developmental, social financial problems. These, in turn, canhave additional newborns areathighriskoflong-termpsychological and disease. Furthermore, family membersofsmallandsick lost throughnewborn mortality, andlong-term disability human potentialfor lifelong healthandwell-being is conditions.Substantial dice, andthosewithcongenital injury, severe bacterialinfection andpathologicaljaun- with complicationsfromprematurity, intrapartum brain of inpatientcareeach year. This includesnewborns Globally, upto30millionnewborns requiresomelevel and sick (4). newbornswithalong-termdisability survive maturely. Inaddition,afurtherestimated1millionsmall are low-birth-weight (LBW), andtwothirdsarebornpre- S R 2024 2026 2028 2030 EXECUTIVE SUMMARY EXECUTIVE © Quirin Leppert Quirin ©

Unfortunately, these rights are not respected or protected in all settings, particularly for the most at-risk newborns KEY TERMS and those who are members of marginalized groups or Essential newborn care: key routine practices living in humanitarian settings. To protect newborns, coun- in the care of all newborns, particularly at the time tries need to translate the CRC guidelines into domestic of birth and during the first days of life, whether in laws and regulations, and then implement them. the health facility or at home.

UHC is a global imperative to achieve the SDGs; thus Special newborn care: key inpatient care (24/7) everyone – including newborns – should have access to practices for small and sick newborns, including the health services they need without facing financial (but not exclusively) provision of warmth, feeding hardship (7). This is particularly true for the families of and breathing support; treatment of jaundice; and small and sick newborns who can face devastating hos- prevention and treatment of infection. Special pital costs due to lengthy inpatient stays. newborn care may include the provision of intermittent positive-pressure therapy. Special care can Overcoming inequities only be provided in a health facility. National neonatal mortality rates (NMRs) vary significantly Intensive newborn care: key inpatient care (24/7) between countries, from 0.9 to 44 deaths per 1000 live practices for very small and sick newborns, includ- births (3). Almost all neonatal deaths (98%) occur in low- ing the provision of intermittent positive-pressure and middle-income countries (LMICs), with 75% occurring therapy. Intensive care can only be provided in a in Southern Asia and sub-Saharan Africa. Of the 10 coun- higher (usually tertiary) level facility. tries with the highest NMRs, 8 are in Africa; the majority (See Chapter 3 for more details on organizing have experienced a recent humanitarian crisis (Box ES.1). services by level of care.) The likelihood of a newborn surviving and thriving is Family-centred care: an approach to care delivery determined by where she or he is born. In high-income that promotes a mutually beneficial partnership countries (HICs), newborn mortality is uncommon, and among parents, families and health-care provid- more than 95% of preterm2 newborns go on to survive ers to support health-care planning, delivery, and and thrive. In middle-income countries (MICs), the risk evaluation. The principles of family-centred care of disability for infants born between 28 and 32 weeks include: dignity and respect; information sharing; participation; and collaboration. It can be practiced in health facilities at all levels. 2 In this report “preterm” refers to childbirth occurring at less than 37 completed weeks (or 259 days) of gestation.

3 4 SURVIVE AND THRIVE: Transforming care for every small and sick newborn for newborns, which fits thepurposeofsaving thelives appropriate inpatient care. To transform inpatient care have healthcare–includingaccessto access toquality andthrive,Most newborns provided can survive they and areentitledto Deliver thecarethey need the righttohealthsetoutinCRC. tries mustaddressinequitiesandprotectpromote newborns annually. To achieve coun- theSDG3target, gapcouldsaveClosing thisequity thelives000 of500 deathastherichestof neonatal 20%ofthepopulation. by amedianof16% ifallhouseholdshadthesamerisk ratecouldbereduced average mortality nationalneonatal the highestburdenofnewborn deathsfound thatthe from63countrieswith An analysis data ofsurvey Marginalized families aremostatrisk,even inHICs. to afford advanced carewhenneeded. lack ofparentsorcaregivers ofbasiccare,ortheinability than 28weeks’ usuallydieeitherthrougha gestation, est andsickest newborns, includingthosebornatless isuncommonsincethesmall- countries (LICs),disability isnearlydoublethatofHICs.Inlow-incomeof gestation services inhumanitarian settings. with additionalguidanceonhow to provide those existing WHO standards ofcare for newborn health, guide to support theseefforts (8). Itsummarizes the Newborn healthinhumanitarian settings: field newborns. An interagency collaboration developed programmes shouldincludecare for smallandsick these especiallychallenging environments. Their work to reach themostvulnerable populationsin To achieve theSDGs, theglobalcommunitymust the risks related to unassisted childbirth. health andunplannedpregnancy increases, asdo bility to malnutrition, sexualviolence, poormental their children. At thesametime, theirown vulnera- immense obstaclesto provide care andsafety for those whohave recently given birth mustovercome In humanitarian settings, pregnant women and crises, such asconflictorpoliticalinstability. world, 11 have experienced recent humanitarian Of the16countries withthehighestNMRsin of humanitariansettings Box ES.1 Thespecialchallenge the level ofcare. preventing anddisability, newborn mortality accordingto ES.1 proven listsinpatientinterventions tobeeffective in a higher-level districtortertiary-level) facility. (e.g. Table intensive inpatientcare,which canonlybeprovided in Only oneinthreesmallandsick newborns requires care, which canonlybeprovided inahealthfacility. sick newborns canbemanagedwithspecialinpatient whether inahealthfacilityorathome.Mostsmalland larly atthetimeofbirthandduringfirstdays oflife, example, allnewborns requireessentialcare,particu- may have different needsdependingontheirfragility. For needed) professionals inadedicatedspace.Newborns care delivered by competentandspecialized (where Small andsick newborns inpatient requirehigh-quality infections,neonatal abnormalities. andcongenital include prematurity, encephalopathy, neonatal jaundice, andlong-termcomplications. risks ofmortality These improving carefor theconditionsthatbringgreatest of smallandsick newborns, countriesshouldfocus on ing, mentoring and retaining these health-careproviders mentoringandretaining ing, ticularly inrural andhard-to-reach areas.Recruiting, train- have ofnursesandmidwives, shortages par substantial nursingcadres,willbe acrucialtheir neonatal step.Many tencies ofexisting providers, andcreatingorexpanding For many carecompe- countries,buildingtheneonatal providers withspecialized skillsinnewborn care. teamofappropriatelytrainedhealth-care multidisciplinary a day, 7days aweek. This careshouldbedelivered by a Inpatient carefor newborns mustbeavailable 24hours Health workers equippedwithnewborn care skills motes cognitive development (10). andfeedingsupports lactation withbreastmilk andpro- parents, particularlythemother, encouragesbonding, promote healthy development. with Maximizingcontact be separatedandallinteractionsshouldstructured to forhospitalization all,mothersandnewborns shouldnot taneously. To minimize theadverse consequencesof be recipientsofcare,beingtreatedtogetherorsimul- mother may beconsideredatthecentresincebothmay nation ofthese.Insomecases,thenewborn andthe providers, mother, father, othercaregivers, oracombi- newborn whoreceives treatmentfromhealth-care In thisreport,thepersonatcentreofcareis provided inatimelymanner, andpeople-centred(9). ganized, accessible,adequatelyresourced,efficient, careisevidence-based,Good-quality safe, well-or Putting peopleatthecentre oftransforming care - - EXECUTIVE SUMMARY EXECUTIVE

Table ES.1 What type of care is needed? Requirements for interventions at different health system levels

Type of care Level provided Standards of care and evidence-based interventions Primary Essential Immediate newborn care (thorough drying, skin-to-skin contact of the newborn with the newborn mother, delayed cord clamping, hygienic cord care); neonatal resuscitation (for those who care need it); early initiation and support for exclusive breastfeeding; routine care (Vitamin K, eye care and vaccinations, weighing and clinical examinations); prevention of mother-to-child transmission of HIV; assessment, management and referral of bacterial infections, jaundice and diarrhoea, feeding problems, birth defects and other problems; pre-discharge advice on mother and baby care and follow-up.

Secondary Special Thermal care; comfort and pain management; kangaroo mother care; assisted feeding for newborn optimal nutrition (cup feeding and nasogastric feeding); safe administration of oxygen; care prevention of apnoea; detection and management of neonatal infection; detection and management of hypoglycaemia, jaundice, anaemia and neonatal encephalopathy; seizure management; safe administration of intravenous fluids; detection and referral management of birth defects. Transition to intensive care: continuous positive airway pressure; exchange transfusion; detection and management of necrotizing enterocolitis (NEC); specialized follow-up of infants at high risk (including preterm).

Tertiary Intensive Advanced feeding support (e.g. parenteral nutrition); mechanical/assisted ventilation, newborn including intubation; screening and treatment for retinopathy of prematurity; surfactant care treatment; investigation and management of birth defects; paediatric surgery; genetic services.

should be a priority for governments. The principles of Ensure they thrive family-centred care should be included in this health-care training. This will enable health workers to partner pro- The Nurturing Care Framework for Early Childhood actively with family members from the beginning of the Development, launched by WHO, UNICEF and the World inpatient experience and help build their confidence and Bank Group, demonstrates that focusing on early child- skills to continue care after discharge (11). hood development is one of the wisest investments a country can make to boost economic growth (13). It is imperative to enhance the linkages between maternity and neonatal services. This should include linking Optimal early childhood development requires attention essential newborn care and resuscitation with early during the period from pregnancy to 3 years of age. initiation of breastfeeding, and emergency obstetric and During the first month of life, the brain is highly vulnera- newborn care with the identification of small and sick ble to birth and postnatal complications. Infants who are newborns and their immediate care. born small or sick are at risk of disability and poor development and require extra attention to promote optimal The power of parents development. When a newborn is separated from the Family-centred care empowers parents by involving them mother, father or caregiver, there can be further adverse in caregiving for their newborn. It promotes a mutually effects on brain development. beneficial partnership among parents, families and health- care providers to support health-care planning, delivery, Disabilities can be prevented or mitigated with and evaluation (12). Strengthening parent skills and com- good-quality, developmentally supportive care. As more petence in caring for their small, sick or high-risk infant small and sick newborns survive, due to increased reduces stress and anxiety, and benefits the newborn’s access to services, countries may experience higher weight gain and neurodevelopmental progress. Parental rates of disability due to compromised quality of care. skills continue to grow after discharge with the support of in-home visits, outpatient services and ongoing educa- At-risk newborns require vigilant follow-up to thrive. It is tion. Mothers, fathers, families and communities can vital to screen and monitor the health and development become powerful agents of change when they harness of children who were born small and sick to identify their passion and commitment positively to influence developmental delays and disability, such as cerebral policies and programmes related to newborn health. palsy, retinopathy of prematurity (a leading cause of

5 6 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© UNICEF / UNI195715 / Mawa 3 health andwell-being. gapstoclose The data high-priority sick newborn careinallsettings; andensurelong-term to endpreventable deathby 2030;enhancesmalland deaths by 2030,countriesmusttransform measurement opment. To achieve andendpreventable theSDGtarget ratesandsupportinghealthying survival childhood devel- andinformation toimprovStrong data systems arevital ing birthanddeathregistration(16–18). information andmanagementsystems, thereby improv facilities. These canbeincludedbothinnationalhealth available duetotheincreasingnumberofbirthsinhealth of thesenewborns. Newhave data recentlybecome exist toimprove metricsandhighlighttheunmetneeds quality, availability anduse.Numerousopportunities to drive action,whileefforts aremadetoimprove data forExisting data smallandsick newborns canbeused Use datafor action can bemoreeffectively addressedandmitigated(14, 15). toidentifypotentialissuesearly,important sothatthey impairments andotherdevelopmental delays. Itis preventable childhood andvisual blindness),auditory See: https://www.healthynewbornnetwork.org/partner/helping-babies-breathe/. - - global public–private partnership. suchhealth interventions, astheHelpingBabies Breathe vative partnershipshave advanced therapidroll-outof applying ergonomicprinciplestounitset-up.Someinno- ing processimprovements, such astask-shifting rolesor tools pressure (bubbleCPAP) diagnostic andpoint-of-service rates inLMICsincludebubblecontinuouspositive airway ucts andtechnologies thatcouldpositively impactsurvival innovative careapproaches. Examplesoflow-cost prod- support thedesign,testingandscaling-upofnew and Investing inresearch anddevelopment iscriticalto Innovate andresearch to accelerate change newborn anddevelopment. survival investments anddrive actionfor better outcomesfor sick newborns. Onlythencandecision-makers guide collect, monitor, shareandevaluate onsmalland data For improvement, continuousquality countriesneedto and measurelong-termoutcomesfor at-risknewborns. – includingthecareexperience –and how tofollow-up are routinemeasurementofcoverage ofcare andquality edge gaps specific to certain settingsedge gapsspecifictocertain andtopics. The vast Robust research shouldbescaled-uptoaddressknowl- (19). Facilities canalsobenefit- fromground-break 3

EXECUTIVE SUMMARY EXECUTIVE

Fig. ES.2 Estimated effect of scaling-up interventions on maternal and neonatal deaths and stillbirths by 2030, from a 2016 baseline

1 600 000

Maternal deaths 1 400 000 1 357 000 Neonatal deaths

1 200 000 Stillbirths

1 000 000

800 000 747 400 Lives saved 602 600 600 000

400 000

200 000 156 900

5 600 - Preconception Pregnancy Care during Care of the Care of small nutrition care care labour and childbirth healthy newborn and sick newborns

Adapted from: Bhutta et al. 2014. Can available interventions end preventable deaths in mothers, newborn babies, and stillbirths, and at what cost? (2).

majority of research on care for small and sick newborns Cost of care for small and sick comes from high- and upper-middle-income settings, and newborns and return on investment requires testing and adaptation to low-resource contexts. Having context-specific data and evidence for interven- An increased access to quality inpatient care for small tion effectiveness will provide insights into, and validation and sick newborns does not need to be prohibitively of, true needs and environmental nuances (20). expensive or out of reach for countries with less-developed health systems.

Now is the time to act: 1.7 million As shown in Table ES.2, the annual incremental cost newborns can be saved each year of scaling-up the package specifically for inpatient care of small and sick newborns between 2016 and 2025 is By scaling-up a comprehensive set of interventions estimated at US$ 959.3 million (US$ 0.20 per person and along a continuum of care shown in Fig. ES.2 – from US$ 1700 per newborn death averted). preconception nutritional care, to care of small and sick newborns – the annual number of neonatal, stillbirth and By investing in the health and development of the maternal deaths could be reduced by an estimated 2.9 next generation, countries can build human capital and million in 81 high-burden countries by 2030. Of these, accelerate economic development. A healthy start is 1.7 million would be neonatal deaths, or 68% of mortality. particularly important for LMICs wanting to capitalize on Nearly half of the total number of neonatal lives saved the demographic dividends of young people for the next (747 400 newborns per year) would result from providing generation and national prosperity. specific interventions for small and sick newborns (i.e. high coverage of quality special and intensive care).

7 8 SURVIVE AND THRIVE: Transforming care for every small and sick newborn to high-quality essential carefor motherand to high-quality every complications can beprevented by ensuringaccess of carefor smalland sick newborns. Many deathsand focus onexpanding accesstocareandimproving quality birth andthefirstday and week oflife,a theremust be In additiontofocusing onimproved careduringlabour, and care for smallandsick newborns invest incare around thetime ofbirth, STRATEGIC OBJECTIVE1: crucial frontier(2): Newborn Action Planhave beenadaptedfor thisnew, newborns. The five strategicobjectives fromtheEvery and attention ontransforming carefor smallandsick Newborn Action Plan,thereneedstobegreaterfocus To achieve thevisionandgoalssetoutinEvery borns specifically(2): ingeneralandcarefor smallandsickmortality new for theyears 2025and2030regardingnewborn The Newborn Every Action Plansetoutconcretegoals Strategic goalsandobjectives Table adaptedfrom:Bhutta etal.2014 (21). care,careofthehealthyimmediate neonatal neonateandcareofthesmallsick neonate. * Total package care,careduringlabourandchildbirth, includespreconceptionnutritioncare,antenatal Table ES.2 Incrementalcostofthescale-upplanfor theyear 2025 Comprehensive package* sick neonatalpackage Care ofthesmalland • • hensive intensive care. neonatal targets willbeset for compre country-specific anti and othersupportive care;andwillreceive needed; willreceive kangaroomothercare(KMC) at least75%ofnewborns if willberesuscitated Care for smallandsick newborns: By 2025, ability, ensuringthatnonewborn isleft behind. live birthsandcontinuetoreducedeathdis- of12target newborn deathsorfewer per1000 in linewithSDG3.2,allcountrieswillreach the End preventable newborn deaths:By2030, biotic therapy ifneeded.Inaddition, 1 187.3 423.8 Strengthen and Capital costs

2 115.5 88.7 supply costs

Drug and - Annual costsin2025(US$million) improve follow-up carepracticesarecrucial. care,engage meaningfullyinthatcare and demand quality empowerment ofparents,families andcommunities to home post-discharge andinthecommunity. Educationand actively engagedand empowered at duringhospitalization, are thefocus ofcare, requiresparentsandfamilies tobe A family-centred approach, wheresmalland sick newborns of parents, families andcommunities STRATEGIC OBJECTIVE4: age oflife-saving care. groups, canaccelerateprogresstowards cover equitable and usinginnovative approaches toreach vulnerable this evidence inaccordancewiththeprinciples ofUHC, care andendingpreventable newborn deaths. Applying ity. Robust evidence isavailable onpromotingequitable settings,including thoseinhumanitarian must beaprior this right,particularlyfor themostvulnerablenewborns, hardship isahumanright.Protecting andpromoting Access healthcarewithoutfinancial tohigh-quality woman andnewborn to reduce inequities STRATEGIC OBJECTIVE3: on tothrive. ties andensurethatnewborns develop healthilyandgo ensure newbornbutalsotominimize survival, disabili- high-impact, costeffective arecrucial interventions to for women andchildren. care,including High-quality There variation ofcare issubstantial inthequality quality ofmaternal andnewborn care STRATEGIC OBJECTIVE2: intensive care. neonatal are notredirectedtoimprove accesstospecialand willnotbeachievedmortality ifresourcesandattention newborn. The toendpreventable SDG3target newborn 1 995.3 335.1 Workforce costs recurrent costs 347 301.0 Other 111.7 Harness thepower Reach every Improve the Total costs 5 645.3 959.3 - - EXECUTIVE SUMMARY EXECUTIVE

STRATEGIC OBJECTIVE 5: Count and track every small and sick newborn Data and metrics enable managers to monitor progress and take action to improve results. The availability of standardized indicators to monitor expenditures and outcomes is key to promoting accountability. There is a need for accurate, reliable data to facilitate planning efforts and to measure quality, outcomes and the impact of interventions and programmes.

The path to 2030

If appropriate action is taken globally, small and sick newborns can, and will, survive and thrive as future productive members of society. With strategic partnerships, © 2018 Karen Kasmauski technologies and innovative approaches, the international community can transform all aspects professionals, professional associations, private sector orga- of neonatal care, from its availability and quality to its nizations, researchers, empowered parents, and engaged uptake and affordability. communities) to expand coverage of maternal and neonatal services and to enhance impact through a family-centred This requires all stakeholders working together (includ- approach to inpatient newborn care. Everyone has a role to ing governments and partners, competent health-care play in ensuring a thriving next generation.

A PARENT’S STORY

A preterm boy survives and thrives in South Africa

Six months into her pregnancy, Tasmin Bota started independently. Also, Jayceon was treated for jaundice bleeding. She went to the closest hospital to rest. A day and a mild heart defect (patent ductus arteriosus). later, “I was woken up by a gush of blood. The doctors Tasmin spent time in the KMC ward, which she found said: ‘We need to take this baby out right now.’ They did “tremendously helpful because I cared for him for an emergency caesarean section,” she recalled. 48 hours all day and night,” which helped her “feel Tasmin’s son Jayceon was born more prepared”. at 28 weeks’ gestation, weighing After discharge, Jayceon received medical and develop- 1080 g. “It was a total shock. He was mental follow-up, including physical, occupational and skin and bones,” Tasmin remembered. “In my mind, I was saying speech therapies. Despite some mild physical delays, that ‘there is no way that someone the 17-month-old Jayceon is thriving. this small can survive’.” Tasmin wishes that there were “psychologists available Jayceon lived 54 days in the for parents to speak to in the hospital because it really “It takes a village, hospital. He spent the first week is a traumatic experience”. This need inspired Tasmin to and we had a on a ventilator, moving to con- create a Facebook group called Preemie Connect, which village.” Tasmin, pictured with her tinuous positive airway pressure is a growing resource for other South African families son Jayceon (CPAP) until he was able to breathe learning to care for their preterm babies.

9 10 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 12. 11. 10. 9. 8. 7. 6. 5. 4. 3. 2. 1. REFERENCES

O’Brien K,Robson K, Bracht M,Cruz M,LuiK, J GlobHealth.2018;8(1):010702. what dowe needand whatcanwe measurenow? iness for inpatientcare ofsmallandsick newborns: C,Ram PK,NiermeyerLaryea read- S, etal.Service Moxon SG, Guenther T, Gabrysch S, Enweronu- advances, impact.SeminPerinatol. 2011;35:20–28. intensive tered careintheneonatal unit:origins, Howse JL,Berns SD. Family supportandfamily cen- Gooding JS, CooperLG,BlaineBA, Franck LS, World HealthOrganization:2016. Provisional agendaitem16.1. 15 April 2016. Geneva: Report by thesecretariat. health services. A67/39. WHO, Framework onintegratedpeople-centred Children; 2017. tings field guide.New York: UNICEFandSave the in Crisis.Newbornset- healthinhumanitarian Inter-agency Working GrouponReproductive Health February 2019). topics/sustainabledevelopmentgoals, accessed21 2015 (https://sustainabledevelopment.un.org/ Nations DepartmentofEconomicandSocial Affairs: UN DESA. Development Sustainable Goals.United 9 May 2019). un.org/documents/ga/res/44/a44r025.htm, accessed United Nations;1989 A/RES/44/25 (https://www. Convention ontheRightsofChild.New York: Pregnancy Childbirth.2015;15 Suppl2:S7. system bottlenecks andpotentialsolutions.BMC sick analysis newborns:ofhealth amulti-country G,Deorari Gupta A, etal.Inpatientcareofsmalland Moxon SG,Lawn JE,Dickson KE,Simen-Kapeu A, 2014;384(9938): 189–205. orities, andpotentialbeyond Lancet. survival. Waiswa P, newborn: etal.Every progress,pri- Lawn JE,Blencowe H,OzaS, You D, Lee AC, New York: UnitedNationsChildren’s Fund; 2018. agency groupfor child estimation(UNIGME). mortality 2018. Estimatesdeveloped by theUnitedNationsinter- UN IGME.Levels &trendsinchild report mortality: accessed 21February 2019). nal_child_adolescent/newborns/every-newborn/en/, Organization; 2014 (http://www.who.int/mater end preventable deaths.Geneva: World Health UNICEF, WHO. newborn: anactionplanto Every Every Woman Child;2015. Every and adolescents’ health(2016–2030). New York: EWEC. The globalstrategyfor women’s, children’s -

21. 20. 19. 18. 17. 16. 15. 14. 13.

and atwhatcost?Lancet.2014;384(9940):347-70. deaths inmothers,newborn babies,andstillbirths, VK, etal.Canavailable endpreventable interventions Bhutta ZA,Das JK,Bahl R,Lawn JE,SalamRA,Paul and child health.CostEff Resour Alloc. 2017;15:12. Development Goalsrelatedtomaternal, newborn, ing innovations onachievement ofSustainable Batson A. Modelingthepotentialimpactofemerg- Herrick T, Harner-Jay C,Shaffer C,ZwislerG,DigreP, wardnatal inMalawi. PLoS One.2014;9(1):e86327. distressinaneo- system intreatmentofrespiratory S, Gest A, etal.Efficacy ofalow-cost bubble CPAP Kawaza K,Machen HE,Brown J, Mwanza Z,Iniguez 4 March 2019). work.org/resource/enap-metrics-cards/, accessed Published 2017 (https://www.healthynewbornnet- report cards. The Healthy Newborn Network. WHO, UNICEF, LSHTM. newborn metrics Every Geneva: World HealthOrganization; 2015. Ferney Voltaire, France, 3–5December2014. health indicators:everynewborn actionplanmetrics: WHO. WHO technical onnewborn consultation 2):S8. BMCPregnancydata. Childbirth.2015;15 (Suppl measurement improvement roadmapfor coverage Fournier S, Grove J, etal.Counteverynewborn; a Moxon SG,Ruysen H,Kerber KJ, Amouzou A, toolkit/index.html, accessed21February 2019). www.ahrq.gov/professionals/systems/hospital/nicu_ for HealthcareResearch (AHRQ)(http:// andQuality (Content lastreviewed December2013). Agency AHRQ. Transitioning newborns fromNICUtohome. 1):S24–28. psychosocial support.JPerinatol. 2015;35 (Suppl planning andbeyond: recommendationsfor parent Purdy IB, CraigJW, ZeanahP. NICUdischarge handle/10665/272603, accessed22November 2018). Health Organization;2018 (https://apps.who.int/iris/ form healthandhumanpotential.Geneva: World for helpingchildren andthrive survive totrans- for earlychildhood development: aframework WHO, UNICEF, World Bank Group.Nurturing care Adolesc Health.2018;2(4):245–54. cluster-randomised controlledtrial.LancetChild& parent outcomes:amulticentre,multinational, intensivecare inneonatal unitsoninfant and Alvaro R,etal.Effectiveness offamily integrated

CHAPTER 1. Now is the time to transform care for newborns 11 CHAPTER 1 CHAPTER

Now is the time to transform transform to time the is Now care for newborns © Juozas Cernius / WHO / Cernius Juozas © 12 SURVIVE AND THRIVE: Transforming care for every small and sick newborn • • • KEY MESSAGES has demonstrated benefits for infants, theirparents, andsociety. professionals andcommunities. Family-centred carefor smallandsick newborns newborns by isbestserved partnershipsbetweenparents,health-care parents, familiesand healthworkers. The andwell-being survival ofvulnerable People-centred care offers proven benefits fornewborns, as wellfor intensive carefor sick newborns totheoverall continuum ofcare. these asafoundation, additionalprogress can bemadeby addingspecialand individualized obstetriccareandessentialnewborn careonawidescale. With that “classic” publichealthapproaches must besupplementedby offering shows established obstetricandessentialnewborn healthservices.History levelsofcaretowell- requiresaddingspecialand intensive under 5years ofnewbornsandchildrenMeeting globaltargetsforthesurvival aged newborns livinginmarginalized settings. populationsandhumanitarian andthrive. the righttosurvive This includesthemostvulnerablesmallandsick Nations Convention ontheRightsofChildguaranteethatallchildren have The andthrive. SDGstheUnited Every newbornhastherighttosurvive CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now © Amy Fowler / USAID

very year, more than 30 million newborns globally infants aged 1–11 months (postneonatal period) declined face life-threatening conditions that require by 51%. This lopsided progress means that almost half hospital care. Everything that happens to them of all under-5 deaths (47%) now occur in the first 28 days in hospital matters. It increases their chances after birth (neonatal period) (3). Since its launch in 2014, the Eof survival, influences their brain development, and can Every Newborn Action Plan has emphasized the need to affect their entire life course. address this disparity by improving access to quality care during childbirth and for small and sick newborns. Low-birth-weight (LBW), prematurity, congenital defects and illness can lead to death, acute or chronic diseases, and The Nurturing Care Framework for Early Childhood poor development if newborns do not receive the care they Development, launched at the Seventy-first World Health need. Conversely, those who receive nurturing care have a Assembly, shows that focusing on early childhood better chance of growing into healthy children and adoles- development is one of the wisest investments a country cents, and maturing into thriving and productive adults. can make to improve people’s lives and boost economic How can the needs of small and sick newborns be met growth (4). During the first month of life, the brain is highly in this way? How can parents and families be adequately vulnerable to intrapartum and postnatal complications, supported during the early critical days and beyond? with further adverse neurodevelopmental effects when the newborn is separated from the mother, father or This report advances the agenda of the Every Newborn caregiver. People who receive quality health care that is Action Plan, endorsed by 194 Member States at the developmentally appropriate during pregnancy, at birth and Sixty-seventh World Health Assembly in 2014 (1). It in the first months and years will benefit throughout life. supports the targets of SDG 3 on health, focusing on the small and sick newborn. It also builds on the Global Improving the life chances of those who are born too Strategy for Women’s, Children’s and Adolescents’ soon, too small and too sick will help to achieve the SDG Health (2016–2030) (2). 3 target of no more than 12 newborn deaths per 1000 live births by 2030. Most newborns can survive and The slow rate of decline in newborn deaths compared with thrive with access to quality care, but that will require a the decline of overall child mortality is one of the most con- sustained focus on transforming care in ways that will cerning disparities in global health. Mortality among chil- make a difference for them and their families. dren under the age of 5 years (under-5 mortality) fell 60% during 2000–2017 compared with a 41% drop in mortality This report offers promising solutions to mobilize among newborns. In the same period, mortality among constituencies capable of giving voice to the most

13 14 SURVIVE AND THRIVE: Transforming care for every small and sick newborn literacy ofthecaregiver. maternal ageandeducationalstatus, disability, andlow from factors such aspoverty, ethnicity, genderbias, settings.humanitarian Added may susceptibility result ized groups,rural areas,urbanslumenvironments and include thosebornsmallandsick inthemostmarginal- a publichealthperspective, newborns mostlikely todie weight), oracutelyillaremostatriskofdeath(5).From soon (<37weeks’ gbirth toosmall(<2500 gestation), From aclinicalperspective, newborns whoareborntoo Who arethemostvulnerablenewborns? newborns each year. Action mustbetakennow tosave morethan1.7 million human capital. intergenerational poverty andstrengtheneach nation’s stunted growth. Achieving thesegoalswillmitigate promote earlychildhood development andreduce to prevent disabilities,supportcognitive function, quality, nurturing andresponsive healthcaredesigned for smallandsick newborns requiresinvestments in To endpreventable newborn andchild deaths,care poses specificstepstorealize thevisionofSDGs. efforts andinvest theirresources.Furthermore, itpro- levelsregional, nationalandcommunity tointensifytheir lies. Italsoincludesacalltoallstakeholdersattheglobal, vulnerable andfragilecitizens andtheirparentsfami- * IAWG, Inter-agency field manualonreproductive settings health inhumanitarian (7). serious inlow-resource settings where healthsystems providers. The long-term effects canbeparticularly disrupt healthsystems andthework ofhealth-care Periods ofconflictornatural disasters can greatly famine, andoften involves populationdisplacement”. as armed conflicts, natural disasters, epidemicsor is required. This canbetheresult ofevents such community isoverwhelmed andexternal assistance group ofpeople. The copingcapacityoftheaffected security orwell-being of acommunityorotherlarge has resulted inacritical threat to thehealth, safety, setting isoneinwhich “an event orseries ofevents Reproductive HealthinCrises, ahumanitarian According to theInteragency Working Group on Box 1.1 anddisaster:aspecialnoteonhumanitarian settings Conflict * addressed. Functional healthsystems arerequiredfor the complications –butonlywhenhealthsystem gapsare sick newborns andthrive couldsurvive withoutmajor appropriatecare,alargeproportionofsmalland With Visionary strategiesandframeworks social, economicandlegalinstitutions. level. This mustbeaccompanied by thetransformation of systems mustbestrengthenedandtransformed atevery optimize theirchances andthrive, health tosurvive To address theneedsofsmallandsick newborns and (see Box 1.1), urbanslumsand remoterural areas(7). in LMICs–andeven settings moresoinhumanitarian newborns isoften achallenge inhealthsystems located ening risks.Delivering inpatientcarefor smallandsick subject thepopulationinLMICstoeven morelife-threat- logical, social,environmental andhealthsystem factors specific challenges (6). As aresult,combinationofbio- dle-income countries(LMICs),wherehealthsystems face ismostacuteinlow-countries, vulnerability andmid- imperative spanninghigh-,middle-andlow-income While thefocus onsmallandsick newborns isaglobal to reach the mostvulnerable. parents into every programme andpackage designed integrate care for smallandsick newborns andtheir working inhumanitarian settings willneedto To achieve thetargets ofSDG3, organizations the lack ofdata, however, the true burden isunknown. violence andunplannedpregnancy increases. Dueto time, women’s vulnerability to malnutrition, sexual safety for themselves andtheirchildren. At thesame overcome immenseobstacles to provide care and childbirth. Those whohave recently given birth must increased risk ofpooroutcomesrelated to unassisted crisis. Insuch settings, pregnant women are often at may already have beenweak before theonset of worsen thesituation. nomic, gender andgeographic disparities can acutely illare mostatrisk ofdeath. Social, eco- Newborns whoare born too soon, too smallor CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now (provision of quality inpatient care for small and sick new- a human rights-based approach to prevent maternal and borns, just as they are for essential childbirth and newborn child mortality and morbidity. It urges Member States to care and emergency obstetric care. While many countries renew their political commitment and act to address the have shown the political will to overcome challenges, a main causes of mortality and morbidity. In addition, the number of misconceptions that restrict the use of lifesav- Council has welcomed the preparation of technical guiding interventions persist (Box 1.6 at end of chapter). ance on how to apply a human rights-based approach to policies and programmes aimed at reducing and eliminat- Considerable strides have been made to improve mater- ing preventable maternal and child mortality, and which nal and newborn health during the last two decades as a introduces practical steps for integration of human rights direct result of key global initiatives. Chief among these standards in efforts to address neonatal mortality. are the global Safe Motherhood Initiative, the Millennium Development Goals (MDGs), and the Sustainable Professional associations and expert bodies have further Development Goals (SDGs). The Every Newborn Action defined and described these rights in several other Plan and the Global Strategy for Women’s, Children’s and instruments (10, 11). All recognize that newborns have Adolescents’ Health provide frameworks for action and fundamental rights and freedoms, as stipulated in inter- are guided by the Convention on the Rights of the Child national law. These include the rights to survival, health (CRC), the principles of universal health coverage (UHC), and development; to a legal identity from birth; to be pro- the WHO Framework on integrated people-centred health tected from harm, violence and neglect; and to a caring, services, and the “continuum of care” concept. This loving and nurturing environment – even in humanitarian report specifically connects these visionary strategies and fragile settings. and frameworks to the mission of improving care for small and sick newborns. The following sections provide a The CRC provides a useful starting point to consider contextual overview for each. a newborn’s legal rights. Governments should translate these rights into domestic laws and regulations, The SDG link and incorporate them into protocols and guidelines for In 2014, the Every Newborn Action Plan set newborn newborn care. Targeted advocacy and policy efforts, mortality and stillbirth reduction targets for 2030, with along with engaged and empowered parents’ organiza- clear milestones (1). Reducing the neonatal mortality rate tions, health professional associations, and civil society (NMR) is one of the targets within SDG 3, and reducing organizations, are needed to enforce these legal rights at both neonatal mortality and stillbirth rates is included national and subnational levels. in the Global Strategy for Women’s, Children’s and Adolescents’ Health (2). Emphasis remains on ending Universal health coverage preventable child deaths while prioritizing the period Universal health coverage is a global imperative for from pregnancy to 3 years of age as being critical in early achieving the SDGs. The underlying principle is that childhood development (4). everyone should have access to the health services they need without facing financial hardship(12) . For this Fig. 1.1 maps the 17 SDGs to newborn care to show report, the UHC ambition is that every newborn every- its important links to broader development issues. The where should have access to good-quality respectful mapping reveals a strong connection to 14 targets within health care without financial hardship for the parents eight SDGs. Goals 1–6 have direct links to newborn care. and families. This includes universal access to midwifery care, essential newborn care, obstetric care for maternal Every newborn’s rights and perinatal complications, and inpatient care for small The CRC ensures that newborn health is a human rights and sick newborns – with the promise of quality health issue (8). According to Article 24 of the CRC, all children services throughout their life course. To ensure UHC, have a right to the highest attainable standard of health strong partnerships are required between and among and health care, and WHO Member States have an obli- parents, health-care professionals, political and civil gation to reduce infant and child mortality. In its authori- leaders, and communities. tative interpretation of Article 24, the Committee on the Rights of the Child “urges particular attention to neonatal Integrated people-centred health services mortality, which constitutes an increasing proportion of Adopted at the Sixty-ninth World Health Assembly in under-5 mortality” (9). The United Nations Human Rights 2016, the Framework on integrated people-centred health Council’s resolution affirmed the importance of applying services proposes five interdependent strategies for more

15 16 SURVIVE AND THRIVE: Transforming care for every small and sick newborn UNICEF data: monitoring thesituationUNICEF data: of children andwomen (15). on pretermbirth(13), UNICEFJoint Malnutritionestimates (14), Save theChildren, WHO. Born too soon:theglobalactionreport Sources: and sick newborns sick and for small well-being and potential human unlocking SDGs The Fig. 1.1 of childrenandwomen levels andtrends2018 UNICEF, WHO,WORLD BANK.Jointchildmalnutritionestimates – Sources: Nurturing careFramework (4),Borntoosoon(13) Nurturing CareFramework (4),March ofDimes,PMNCH, mothers andnewbornsreceivethecaretheyneed. services intheaftermathofextremeweathereventstoensure strong policiesandguidelinesareinplacefordeliveryofhealth At countrylevel,emergencypreparednessshouldincludeensuring for theseeventsandensuretheyareresilientabletoadapt. safety ofnewborns.Theirfamiliesandcommunitiesshouldprepare Severe climaticeventsandnaturaldisastersthreatenthehealth SDG 13 (15). (14), andUNICEFdata: monitoring thesituation : CLIMATE ACTION will inturnhavebetterchancesofsurvival. food hasabetterchanceofdeliveringhealthynewborn,who A well-nourishedmotherwithasecure,sustainablesourceof SDG 12 AND PRODUCTION and newborns. should considertheuniqueneedsofmothers Producers sourcingfoodfromtheoceans SDG 14 SDG 11 number ofwomenanddisplacedpopulationslivinginurbansettings. to environmentalhazardsandinfection,especiallygiventherisein Poor livingconditionsinurbanslumsmakenewbornshighlyvulnerable RESPONSIBLE CONSUMPTION mothers andnewborns. systems shouldconsidertheuniqueneedsof Producers sourcingfoodfromland-based SDG 15 LIFE BELOW WATER SUSTAINABLE CITIES ANDCOMMUNITIES services arechallenged. newborns, particularlywherehealthsystemsandlifesaving Inequalities compoundvulnerabilityforsmallandsick SDG 10 LIFE ONLAND ensuring thatanyviolationoftheserightsdoesnotgounnoticed. a child’s recognitionbeforethelaw, safeguardingtheirrightsand Registration atbirthisahumanright.Itthe rststepinsecuring been registered. The birthsofabout25%childrenunder5globallyhavenever SDG 16

REDUCED INEQUALITIES PEACE, JUSTICE ANDSTRONG INSTITUTIONS communities, such asremoteruralareas,urbanslumsand humanitariansettings. health facilities.Ease oftravelisespeciallyimportantfor womenwholiveinmarginalized parents, andadequate roadsthatenablepregnantwomen totravelquicklyandeasily This includeshealthfacilitiesabletoprovide carewithoutseparatingnewbornsfromtheir Investments ingoodinfrastructureare essentialtoaccelerateprogressfornewbornhealth. lifesaving technologiesandmoreeffective care. Innovation iskeytoimprovingcarefor smallandsicknewbornsbecauseitdeliversnew SDG 9 INDUSTRY, INNOVATION ANDINFRASTRUCTURE technology and nancialresourcesarealsoessential. SDG targets.Coordinatingsupportandsharingknowledge, health isneededtosupportgovernmentsachievenational Multistakeholder globalpartnershipsonmaternalandnewborn SDG 17 PARTNERSHIPS FOR THEGOALS health andincrease thepotentialforlong-termeconomic growth. newborn health.In turn,investmentsinnewbornhealthimprove human Education andemployment ofparentsarestrongdeterminants of SDG 8 the individual,familyandcommunitylevels. health andpotential.Theycanhelptoeliminateintergenerationalpovertyat Investments inmaternalandnewbornhealtharethecornerstoneoflifelong reaching theirdevelopmentpotentialduetopovertyandneglect. 250 millionchildrenundertheageof5inLMICsareatgreaterrisknot SDG 1 NO POVERTY DECENT WORK ANDECONOMIC GROWTH technologies forthecareofsmalland sicknewbornscannotfunction. Without affordable,sustainableandreliable modernenergy, basiclifesaving SDG 7 wasting andreducingtheburdenofanaemiainwomenchildren. of illnessandhospitalization,iskeytopromotingsurvival,endingstunting Optimal nutritionforpregnantwomenandtheirnewborns,includingduringtimes robbing thesechildrenofcognitivepotential. 151 millionchildrenunder5yearsarestuntedand273anaemic, SDG 2 AFFORDABLE ANDCLEANENERGY ZERO HUNGER for safe,digni edmaternalandnewborncare. Clean waterandgoodsanitationinhealthfacilitiesareessential and tetanus,cause23%ofnewborndeaths. Infections, includingsepsis,meningitis,pneumonia,diarrhoea SDG 6 CLEAN WATER ANDSANITATION Small andsicknewbornsarefatallyvulnerabletogenderinequality. greater socialriskofdeathduetoculturalnormsaffectingaccessquality care. Newborn boyshavegreaterbiologicalriskofdeath,whereasnewborngirls have SDG 5 to provideappropriatecareforsmallandsicknewborns. Health-care providersoftenlackthecompetencies,supportandremunerationrequired preterm birth,LBWandspontaneousabortion. to cigarettesmoking,second-handsmokeandindoorairpollutionincreasestheriskof Pollution contaminationisaprovenrisktothehealthofdevelopingnewborns;exposure affordable maternityandneonatalhealthservicesmedicaltechnologiesaspartofUHC. Survival, well-beinganddevelopmentofsmallsicknewbornsrequiresaccesstoquality prevention ofnoncommunicablediseasesthroughoutthelifecourse. A healthypregnancyandstartinlife,especiallythepreventionofLBW, supportsthe small andsicknewborns. Under-5 andnewbornsurvivaltargetscanonlybemetbytransformingcarefor Southern Asiaandsub-SaharanAfricaareamongsmallnewborns. 47% ofunder-5 deathsarenewborns,andanestimated80%ofthesein SDG 3 GENDER EQUALITY newborns realizetheirfullcognitivepotentiallaterinlife. disabilities. Investmentsareneededinareassuchasbraindevelopmenttohelp including detectionofproblemsforearlyinterventiontopreventlong-term pregnancy throughchildbirthandthe rstmonthsafterbirthisessential, productivity andwell-beingthroughoutaperson’s life.Ahealthystartfrom on thewaybrainisstructured,andlayfoundationforhealth,learning, A child’s earlyenvironment andexperienceshaveadirectlong-termimpact Every year, 30million newbornsrequirehospitalcaretothriveandsurvive. SDG 4 GOOD HEALTH ANDWELLBEING QUALITY EDUCATION CHAPTER 1

SDG 17 PARTNERSHIPS FOR THE GOALS SDG 1 NO POVERTY newborns for care transform to time the is . Now Multistakeholder global partnerships on maternal and newborn 250 million children under the age of 5 in LMICs are at greater risk of not health is needed to support governments to achieve national reaching their development potential due to poverty and neglect. SDG targets. Coordinating support and sharing knowledge, Investments in maternal and newborn health are the cornerstone of lifelong The SDGs: technology and nancial resources are also essential. health and potential. They can help to eliminate intergenerational poverty at the individual, family and community levels. unlocking human potential SDG 16 PEACE, JUSTICE AND STRONG INSTITUTIONS and well-being for small The births of about 25% of children under 5 globally have never SDG 2 ZERO HUNGER been registered. 151 million children under 5 years are stunted and 273 million are anaemic, and sick newborns Registration at birth is a human right. It is the rst step in securing robbing these children of cognitive potential. a child’s recognition before the law, safeguarding their rights and ensuring that any violation of these rights does not go unnoticed. Optimal nutrition for pregnant women and their newborns, including during times of illness and hospitalization, is key to promoting survival, ending stunting and wasting and reducing the burden of anaemia in women and children. SDG 15 LIFE ON LAND Producers sourcing food from land-based food SDG 3 GOOD HEALTH AND WELLBEING systems should consider the unique needs of 47% of under-5 deaths are newborns, and an estimated 80% of these deaths in mothers and newborns. Southern Asia and sub-Saharan Africa are among small newborns. Under-5 and newborn survival targets can only be met by transforming care for small and sick newborns. SDG 14 LIFE BELOW WATER A healthy pregnancy and start in life, especially the prevention of LBW, supports the prevention of noncommunicable diseases throughout the life course. Producers sourcing food from the oceans should consider the unique needs of mothers Survival, well-being and development of small and sick newborns requires access to quality and and newborns. affordable maternity and neonatal health services and medical technologies as part of UHC. Pollution contamination is a proven risk to the health of developing newborns; exposure to cigarette smoking, second-hand smoke and indoor air pollution increases the risk of SDG 13 CLIMATE ACTION preterm birth, LBW and spontaneous abortion. Severe climatic events and natural disasters threaten the health and Health-care providers often lack the competencies, support and remuneration required safety of newborns. Their families and communities should prepare to provide appropriate care for small and sick newborns. for these events and ensure they are resilient and able to adapt. At country level, emergency preparedness should include ensuring strong policies and guidelines are in place for delivery of health services in the aftermath of extreme weather events to ensure SDG 4 QUALITY EDUCATION mothers and newborns receive the care they need. Every year, 30 million newborns require hospital care to thrive and survive. A child’s early environment and experiences have a direct and long-term impact on the way the brain is structured, and lay the foundation for health, learning, productivity and well-being throughout a person’s life. A healthy start from SDG 12 RESPONSIBLE CONSUMPTION pregnancy through childbirth and the rst months after birth is essential, AND PRODUCTION including detection of problems for early intervention to prevent long-term disabilities. Investments are needed in areas such as brain development to help A well-nourished mother with a secure, sustainable source of newborns realize their full cognitive potential later in life. food has a better chance of delivering a healthy newborn, who will in turn have better chances of survival. SDG 5 GENDER EQUALITY Newborn boys have greater biological risk of death, whereas newborn girls have SDG 11 SUSTAINABLE CITIES AND COMMUNITIES greater social risk of death due to cultural norms affecting access to quality care. Small and sick newborns are fatally vulnerable to gender inequality. Poor living conditions in urban slums make newborns highly vulnerable to environmental hazards and infection, especially given the rise in the number of women and displaced populations living in urban settings. SDG 6 CLEAN WATER AND SANITATION Infections, including sepsis, meningitis, pneumonia, diarrhoea and tetanus, cause 23% of newborn deaths. SDG 10 REDUCED INEQUALITIES Clean water and good sanitation in health facilities are essential Inequalities compound vulnerability for small and sick for safe, digni ed maternal and newborn care. newborns, particularly where health systems and lifesaving services are challenged. SDG 7 AFFORDABLE AND CLEAN ENERGY Without affordable, sustainable and reliable modern energy, basic lifesaving SDG 9 INDUSTRY, INNOVATION AND INFRASTRUCTURE technologies for the care of small and sick newborns cannot function. Innovation is key to improving care for small and sick newborns because it delivers new lifesaving technologies and more effective care. Investments in good infrastructure are essential to accelerate progress for newborn health. SDG 8 DECENT WORK AND ECONOMIC GROWTH Sources: Nurturing care Framework (4), Born too soon (13), This includes health facilities able to provide care without separating newborns from their parents, and adequate roads that enable pregnant women to travel quickly and easily to Education and employment of parents are strong determinants of UNICEF, WHO, WORLD BANK. Joint child malnutrition estimates – newborn health. In turn, investments in newborn health improve human levels and trends 2018 (14), and UNICEF data: monitoring the situation health facilities. Ease of travel is especially important for women who live in marginalized health and increase the potential for long-term economic growth. of children and women (15). communities, such as remote rural areas, urban slums and humanitarian settings. 17 18 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Fig. 1.2 ringsofresponsibilitywithinintegratedpeople-centredhealthservices Intersecting mother andnewborn areinextricably linked andrequire Evidence shows thatthewell-beingofboth andsurvival others whoplay1.2). acriticalroleinhealthcare(seeFig. engage informal caregivers, withfamily membersand the framework recognizes theneedtoempower and to ensureaccesshealthcarefor allcitizens. Notably, incorporates UHCprinciplesandahumanrightsapproach settingtive ofcountry ordevelopment status” (16) . It nated bothwithinandbeyond thehealthsector, irrespec- needs andrespecttheirpreferences, andthatarecoordi- thatbettersupported by responsive services meettheir and communitiesatthecentre, individuals, families, caregivers puttingto reorienthealthservices, This framework callsfor “reforms enabling environment (16). and acrosssectors;creatingan within of care;coordinatingservices reorientingthemodel accountability; ties; strengtheninggovernance and and engagingpeoplecommuni- The five strategiesare:empowering integrated andpeople-centredcare. Source: WHO Framework on integratedpeople-centredhealth services resources and nancing governance, SECTOR: HEALTH practitioners facilities and networks, DELIVERY: SERVICE “ and toovercome theobstacles.” face the[challenges] ofhaving asmallandsick newborn health-care professionals andparentsisthebestway to challenges ofpretermbirth. 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CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now some circumstances, such as the case of maternal death Box 1.2 Family-centred care or in humanitarian settings, the primary caregiver may for newborn health be a member of the extended family or someone from Family-centred care promotes a mutually beneficial outside the family, such as a community member. partnership among parents, families and health- care providers for patients of all ages, with an Women have a unique role as mothers, but men also aim to support health-care planning, delivery and have a key role in the care of newborns, as partners/ evaluation (27, 28). husbands, fathers, caregivers and community members (21, 22). Consequently, for the care of small and sick new- Most family-centred care efforts for newborn borns, an approach that maximizes the role of the parents health strive to build upon core concepts from the and family members while the newborn is cared for in people-centred care framework. These principles the health facility is a relevant application of people-cen- include dignity and respect, information sharing, tred care (23–26). This approach, known as family-centred participation, and collaboration. care (Box 1.2), has a growing evidence base in various Within family-centred care, mothers, fathers or settings and has demonstrated benefits for infants (such caregivers are active partners in the child’s care. The as weight gain and neurodevelopmental progress) as well parent and the newborn (in most cases the mother as decreased parental stress and anxiety and increased and newborn) are a unit of care which is central to caregiving efficacy. Some trials testing comprehensive the newborn’s well-being and development. family-centred approaches have taken place in China (Province of Taiwan), Canada, Australia, the United States of America (USA) and India (Box 1.3) (23, 29–32). Parents vulnerability and inability to survive or thrive without can be powerful agents of change, so empowering them adult support, newborns depend on a mother, father or through advocacy and support groups and harnessing other caregiver for protection and nurturing, but other their passion and commitment can influence policies and family members may also play an important role. In the quality of care for newborns (Box 1.4).

Box 1.3 Engaging families in newborn care in India

In 2008, the neonatal intensive care unit (NICU) feeding); 3. KMC; and 4. preparation for discharge of Dr Ram Manohar Lohia Hospital, in New Delhi, and care at home. India, introduced a family engagement programme. In 2014, with the approval of the Child Health Parents were trained in proper handwashing, Division, Ministry of Health, Government of India, breastfeeding, assisted feeding and skin-to-skin the hospital collaborated with the Norway–India contact for eligible newborns. They also received Partnership Initiative to test the model in five guidance on essential newborn care practices and district-level special newborn care units. Based on danger signs, and on developmentally supportive the study’s results, the Ministry led scale-up efforts care. A randomized controlled trial of the approach by issuing a national policy to support family-cen- documented improved breastfeeding with no tred care in all 700 district-based special newborn increase in hospital-acquired infections or other care units. To date, 85 districts have implemented a adverse events (29). family-centred care educational programme reaching Encouraged by these results, the hospital devel- more than 13 000 mothers and family members. Of oped a health education training programme for newborns with a birth weight below 2000 g, 86% the families, which included: 1. handwashing skills; received KMC and exclusive breastfeeding; 75% importance of infection prevention; protocol for continued to receive KMC at home. Post-discharge entry to nursery; 2. developmentally supportive care mortality reduced from 7% to 3%. Now established (cleaning, sponging, positioning, nesting, handling as a national programme, the family-centred care and interacting with the newborn; breastfeeding approach has led to a profound shift in the treatment techniques, expression of breastmilk and assisted of sick newborns in India.

Adapted from: Sudan et al. Profile on family participatory care in India(33).

19 20 SURVIVE AND THRIVE: Transforming care for every small and sick newborn high-quality inpatientcare forhigh-quality smallandsick newborns. toprovidecontinuous supply ofwater andelectricity with essentialcommodities and technologies; anda includes healthfacilities withtrainedstaff andequipped health sector, delivery andothersectors.Service 1.2Also notedinFig. delivery, areservice thewider such asMalawi (38). legislation; thishasbeendemonstratedinsomesettings stigmatization, benefit families andimprove policies and about carefor smallandsick newborns candecrease offer Raising community awareness financialassistance). carefor otherchildren, (e.g. assistance preparefood and provide encouragement,emotionalcareandpractical may institutions, extended family andfriends(37).They peer support,parentgroups,work colleagues, religious surrounds theaffected family, which may includepeer-to- the community. This refers tothesocialnetworkthat 1.2), (Fig. health services justbeyond thefamily ring lies theframeworkWithin onintegratedpeople-centred develop whenparents determine thatsharing their ences to helpothersinthesamesituation. Groups decide to raise awareness andshare theirexperi- emerge spontaneouslywhenaffected parents Parent advocacy andsupport organizations often borns feel pain(35,. 36) nurses andphysicians thateven very preterm new had afundamentalrole inraising awareness among the right to stay withtheirchildren (34). Parents also ly-friendly hospital-widechanges, such ashaving and Australia have successfully lobbiedfor fami- Historically, parents intheUSA, theUnited Kingdom family-centred care. care unitsseekingto improve quality, safety and are agreat assetasadvisorsto inpatientnewborn As aresult, parents ofsmallandsick newborns public healthandpolicyadvocacy andlobbying. engage inhealthresearch, andbecomeactive with parents willstudy theirnewborn’s condition, other parents andparent support groups. Some interact withthehealth-care team andmeetwith They often observe thenewborn’s responses, experts” withadeepknowledge ofhealthissues. their own newborn, they canbecome “patient and sick newborn care. As they consistently care for Parents canbepowerful agents ofchange for small Box 1.4 Thepower ofparentvoices

- nal, newborn andchild health(RMNCH) isneededto An effective continuum ofcarefor reproductive, mater The continuumofcare care for smallandsick newborns. workers and parentstowork togethersuccessfullyto and supporthealth-careproviders, health community systems, policiestoenable communitiesandsocietal their efforts. Greateralignmentisneededacrosshealth enable orhinderhealth-careproviders andparents in other sectors. These overlapping influencescaneither a broaderlinktosociety, policyenvironments and families, communitiesandhealth-careproviders with Finally, 1.2 Fig. illustrates thecomplex interplay between when they return home(seeChapter3)(39). educate parentsandbuildtheirskillsascaregivers for This includessleeping-inarrangements andactivitiesto parents andimplementfamily-centred careprinciples. The facilityshouldcreateasupportive environment for should receive family-centred care inhospital. policy recommendation thatsmallandsick newborns group for smallandsick newborns. This led to aclear SOS Préma, establishedaNational Assembly working Newborn Healthproject. The French parent group, tives to develop theEuropean Standards ofCare for with healthprofessionals andparent representa- 50 countries andabout90organizations, partnered Newborn Infants, withmembershipfrom more than such group, theEuropean Foundation for theCare of networking atlocal, nationalandgloballevels. One can nurture newleadershipthrough mentoring and Support provided by larger, more establishedgroups affected families. care teams, andinfluencepoliciespractices for promote partnerships between parents andhealth- managers canprovide orsupplementresources to organizations, health-care providers andfacility By working withlocalandregional parent support births, after they hadtriplets. in Bogotá to support parents whohave hadmultiple based parent organization, was founded by acouple Múltiples (TheLeagueofMultiples), aColombia- may empower others. For example, LaLiga deLos with challenges related to theirnewborn’s care, experiences withthehealthsystem, orincoping - CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now meet the health needs of newborns and children, and of adolescents, women, and men throughout the reproductive years. The continuum must take into account both the time of caregiving – from pregnancy and birth, into the neonatal and postneonatal periods and through childhood and adolescence; and the place of caregiving – households, communities and health facilities (40, 41).

This approach to providing RMNCH services has proven cost effective, including for the prevention and treatment of prematurity (40, 42–45). Interventions with the most benefit for small and sick newborn care can be integrated into health service delivery “packages” at different points in the continuum (40).

Fig. 1.3 presents basic health packages across the continuum at different levels within the health system. It highlights the interventions for inpatient care of small and sick newborns that are the

focus of this report. The Every Newborn Action © Erika Pineros / Save the Children

Fig. 1.3 How inpatient care for small and sick newborns fits within the continuum of care for women’s and children’s health

Inpatient care of small and sick newborns

Skilled care at birth Essential newborn care Reproductive health Management Special and intensive Hospital care of including family of pregnancy Comprehensive care for newborns childhood illness planning complications emergency obstetric REFERRAL and newborn care Postnatal care AND TERTIARY LEVEL FACILITY

Skilled care at birth Essential newborn care Reproductive health Prevention and Care of small and including family Pregnancy care Basic emergency management of sick newborns planning obstetric and childhood illness

FIRST AND newborn care

SECONDARY Postnatal care LEVEL FACILITY

Adolescent and Essential newborn care preconception health Home birth with Counselling and Ongoing care for care and nutrition skilled care and Postnatal home visits birth preparedness for mothers and the child at home Gender violence clean practices newborns COMMUNITY prevention

1000 days of compassionate, nurturing care from survival, to thrive for early childhood development

INTERSECTORIAL—Improved living and working conditions including housing, water and sanitation, and nutrition; education and empowerment especially of girls; folic acid forti cation; safe and healthy work environments for women and pregnant women

PRE-PREGNANCY PREGNANCY LABOUR AND BIRTH POSTNATAL CHILD

Adapted from: Every Newborn Action Plan (1).

21 22 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© UNICEF / UN046134 / Kljajo ment became more complexin order to improve calibration andmonitoring. As thehospitalenviron- due to overuse ofthetechnology withoutcareful problems, such asvisualimpairment andlunginjury, new technologies for such vulnerable children ledto able inhealthfacilities. However, therapid rise of and assisted ventilation, becameincreasingly avail- a discipline. Lifesaving interventions, such asoxygen special care ofsick newborns. Neonatology became by 50%, withashift towards theindividualized From the1940s to 1970s, NMRswere further reduced andforat thetimeofbirth newborns PHASE 2:Improved careinpregnancy, newborn care inthehome(26). Families, especiallywomen, were responsible for all breastfeeding, thermal care, andclean cord care. widely promoted today, such asearly initiationof knowledge ofhigh-impactinterventions thatare skilled attendants. Healthpractitioners hadlimited health facilities andadeclineinhomebirths without imately 25%through increased handwashing in deaths per1000 live births) were reduced by approx From the1900sto 1940s, highNMRs(40newborn PHASE 1:Broad publichealthapproaches three distincthealth-care phases(13). In theUSAandUnited Kingdom, reductions intheNMRoccurred through the USA inthepastcentury reducedneonatalmortality Box 1.5 Historicalperspective: How theUnitedKingdomand - motion offamily-centred care asabestpractice (26). 1980 onward, there was rapid development andpro - patient datato inform quality improvements. From uninterrupted water andelectricity; andtheuseof ment; essentialtechnologies andcommodities; financing; human resources; monitoring; measure- systems, which included: regulations; policies; cal care. Change was underpinned by strong health due to high-quality, individualized, advanced clini- further reduced inhigh-incomecountries by 75%, Between 1970 and2005, newborn mortality was PHASE 3:Specialandintensive neonatalcare adverse effects (26, 34, 50,. 52) involvement incare andthemitigation oflong-term fully advocated ashift to more parental andfamily (34, 51). Insomecountries, reformers have- success consequences were beginningto berecognized (48, 50)Bythemid-20thcentury, theseunintended cal andemotionalissues, such asneglectandabuse bonding, theinabilityto breastfeed, andotherphysi- consequences, includingreduced mother–newborn the hospital(26, 47–49). Separation hadadverse rated, withparents excluded from caregiving within parents andnewborns becameincreasingly sepa- survival (e.g. incubators andinfection control), programmes are needed to stimulate early programmes areneededtostimulateearly If newborns aretothrive aswell assurvive, deaths canbeaverted care(46). withgood-quality disease. An estimated61%oftheseneonatal conditions aresecondonlytocardiovascular natal deathsfromneo- and non-utilizationofservices, package. Among deathsduetopoor-quality care asthecontentof ered isjustasimportant The way inwhich thepackage isdeliv ofservices sick newborn (1). the first week oflife; andcare for thesmalland stillbirths: careduringlabour, aroundbirthand likely toendpreventable newborn deathand packages delivery most and notedtheservice Plan appliedthecontinuumofcareapproach - CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now childhood development with interventions in the first 1000 days – from pregnancy to 3 years of age (4). Small and sick newborns are at greatest risk of suffering from developmental delays, physical disabilities and poor neurodevelopmental functioning (53). An emerging body of evidence demonstrates that disabilities may be prevented or mitigated with good-quality, developmentally supportive care for small and sick newborns. Parents and family members can serve as important partners in delivering well-timed, consistent and appropriate care with vigilant follow-up of at-risk newborns (see Chapter 4 for details) (54–59). © Judith McCord / PCI Lessons from the past Fig. 1.4 shows the trends in mortality decline for the United Countries that have substantially reduced newborn Kingdom and the USA as well as the current global trend. deaths can provide guidance for other countries. Averages for sub-Saharan Africa and Central and Southern Asia are displayed showing how far these regions need to The Born Too Soon report shows that the United go to meet the SDG target by 2030. Changes across all Kingdom and the USA achieved dramatic declines in three phases are required in order to achieve the target. NMR in three phases: broad public health approaches; improved care at the time of birth and special neonatal Progress in reducing NMRs in other high- and middle-incare; and intensive neonatal care (see Box 1.5) (13). come countries followed the same trajectory. However,

Fig. 1.4 Historical and current mortality reductions by phases of care

H R US U S R 45

40 HSE HSE H 35 S S 30 HSE 25 HSE I US S 20 U 15 HSE S

NMR (deaths per 1000 live births) 10 HSE S 5 0 1900 1950 1960 1970 1980 1990 2000 2010 2020 2030 2017

*SDG 3.2 target: all countries to reduce neonatal mortality to at least as low as 12 per 1000 live births by 2030. Sources: UN IGME 2017 estimates (3), March of Dimes, PMNCH, Save the Children, WHO. Born too soon: the global action report on preterm birth (13).

23 24 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Amy Fowler / USAID care complicationsregardlessofsettingmental orlevel of mothers andnewborns atriskfor medicalanddevelop- it isnow well recognized thatroutineseparationplaces Maree C,Downes F. Trends infamily-centered intensive careinneonatal care (26). Sources: March ofDimes,PMNCH, Save theChildren, WHO. Born toosoon:the globalactionreportonpretermbirth (13); Table 1.1 Componentsofnewborn intervention by phase Parental inclusion Health-care providers for newborns Intervention package Components (60). For example, promisingresultsby initiatives As primarycaregivers providers lay(family) workers; communityhealth healers; physicians; traditional midwives; Nurses; maternal nutrition) toxoid immunization; breastfeeding; tetanus approaches (hygiene; Broad publichealth PHASE 1 newborn asunitofcare approaches; parent– and family-centred care separation atbirth” through “no Included physicians; paediatricians lactation specialists; clinicalofficers; nurse midwives; Skilled nurses; cord care;andimmunization) support; vitaminK;eye and breastfeeding andfeeding skin contact;exclusive care, includingskin-to- resuscitation; thermal (infection prevention; Essential newborncare complications. management ofobstetric Safe and delivery PHASE 2 a family-centred careapproach. special andintensive careandconsiderhow tointegrate then determinewhich lessonscanbeappliedtoimprove identify theircountry’s pointand priorities,and starting Health policyexperts andpractitionersshouldfirst nents dependinguponwhich phasethey arein. many countrieshave implementedthesecompo- addressed by thesesuccessive phases. Today, Table 1.1 describesthecomponentsofcare family-centred careinthe1980s and1990s (26). This ledtorapiddevelopment andpromotionof participation inthecareofinpatientnewborns. increased appreciationofthevalue offamily intheUSA20th century andEuropeledtoan social expectationsinthesecondhalfof (52,61).Changing seminate skin-to-skincontact the way for facilities globallytoadaptanddis- mother–infant unitinEstoniapaved neonatal in 1978 in1979 andtheestablishment ofthe such astheintroductionofKMCinColombia unit ofcare parent–newborn asthe and sick newborn care; approach small todelivering Included asthestandard social workers therapists; radiographers; physiotherapists; speech including nutritionists; multidisciplinary team, othersupportnurses; staff; paediatricians; neonatal Neonatologists; growth care forneurodevelopment hypothermia; follow-up feeding support; therapeutic support; moreadvanced notably KMC),respiratory newborn care(thermalcare, Special andintensive PHASE 3 CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now

Box 1.6 Myths and facts

Myth: Roll-out of essential newborn care at the current rate will achieve the 2030 SDG target and reduce newborn deaths globally to 12 per 1000 live births. Fact: Extensive extra measures are needed to achieve the target: effective high coverage of antenatal care; essential childbirth care; essential newborn care; postnatal care; and inpatient care for small and sick newborns. These are needed in all settings, including the most hard-to-reach places such as humanitarian situations, where the burden is highest.

Myth: Effective care of small and sick newborns requires costly, high-tech interventions which are unaffordable in most LMICs. Prevention of preterm birth should be prioritized, as it is more cost-effective than providing special care for small and sick newborns. Fact: Currently, there are few highly effective ways to prevent preterm births. Promising research efforts are underway to understand prevention further. However, most deaths and disabilities from preterm Kasmauski Karen © birth complications can be prevented through highly they experience good-quality care in health facilities, effective, low-cost interventions, such as breastmilk effective post-discharge follow-up, and the early feeding, KMC and continuous positive airway pres- detection and treatment of disabilities. sure (CPAP). Special newborn care has a high impact on outcomes and therefore is highly cost-effective. Myth: Newborn lives have less value and are harder to save, so a better strategy is to save Myth: To prevent newborn deaths, focus is older children first. needed at the community level, not the hospital level. Fact: Almost half of child deaths are newborn deaths (47% in 2017) and that proportion is rising Fact: Globally, 80% of births now take place in (3). Mortality reduction among children aged under facilities, so strengthening safe and effective facility 5 years is not possible without tackling newborn care is essential. Yet the quality of care in many coun- deaths. In addition, focusing on newborn health and tries is very poor, with many newborns discharged development now will benefit future generations. A from hospital too early. Community care is comple- newborn’s life and well-being matter immensely to mentary, but is more effective when linked to care the family, even if they are born small and sick. in health facilities. This is especially the case when normal community structures are interrupted, such Myth: If we allow parents and family members as during a humanitarian crisis. to visit a child in the NICU, they will introduce infections into the unit. Myth: Treating small and sick newborns increases the burden of children who survive Fact: Engagement of parents and family members with disabilities. in the care of their newborns improves health outcomes; and there is evidence that family-centred Fact: Access to quality treatment for every care does not increase infections (29). Infection can newborn, including those who are small and sick, be prevented with hand hygiene practice and access is a fundamental human right. Treatment for these to human milk. newborns prevents both death and disability when

25 A PARENT’S STORY

A Ghanaian mother channels her trauma to build an African advocacy organization

King Luther was born at just 31 weeks’ gestation. His pump. She did not receive any lactation support, and mother, Selina Bentoom, was having a healthy preg- King Luther was given formula throughout his infancy. nancy until her waters broke unexpectedly. When she She received no psychological counselling and was arrived at the private health centre in Accra, an expe- only allowed to visit her son during visiting hours. rienced midwife recognized the potential risks and Despite being only 1.4 kg in size at birth, King Luther advocated for her to receive an progressed well and spent just seven days in the hospi- emergency caesarean section. tal. Impressed with his progress and confident that his During surgery, they learned that Transforming care for every small and sick newborn family could continue his care in the home environment, the umbilical cord was wrapped his doctors granted him an early discharge. He then around his neck twice. received paediatric follow-up and growth monitoring. After his birth, King Luther was Today, King Luther is 3 years old, healthy, and bursting transferred to a large teaching with energy. Selina is now a passionate advocate for pre- hospital, a two-hour drive away. For the next three days mature babies. She founded and became the executive Selina stayed in the health centre. Being separated director of the African Foundation for Premature Babies SURVIVE AND THRIVE: AND SURVIVE from her son was traumatic for her. & Neonatal Care (AFPNC). Now she is also an interna- “The first time I entered the newborn intensive care tional speaker and a policy advisor to Ghanaian health unit, they pointed to the baby, and I ran out of the room system administrators and government officials. in uncontrollable tears. I was scared,” Selina said. “I Selina strongly believes just wasn’t sure if this boy was going to survive. I felt collaboration between health lifeless, broken, and shattered.” professionals, the commu- During their hospitalization, nurses taught Selina about nity, and parents is the key to Kangaroo mother care. improving newborn survival. “KMC made me come to that ‘Aha!’ moment. It gave “Now I’m a walking advo- me the opportunity to bond. It took me a long time to cacy machine,” Selina said. accept my baby, and KMC helped me feel that connec- “I find so much fulfilment by tion,” Selina said. “It was a beautiful time. It gave channelling my pain posi- us a moment.” tively through finding new avenues to save more babies. We need to let the public know that these babies can Still, her overall experience of inpatient care for her son survive so that the next generation will have a better and herself was very stressful and expensive. Selina story to tell regarding prematurity.” had difficulty expressing milk despite her efforts to

26 CHAPTER 1

REFERENCES newborns for care transform to time the is . Now

1. UNICEF, WHO. Every newborn: an action plan to 12. UN DESA. Sustainable Development Goals. end preventable deaths. Geneva: World Health United Nations Department of Economic and Social Organization; 2014 (http://www.who.int/maternal_ Affairs: 2015 (https://sustainabledevelopment.un.org/ child_adolescent/newborns/every-newborn/en/, topics/sustainabledevelopmentgoals, accessed accessed 21 February 2019). 21 February 2019). 2. EWEC. The global strategy for women’s, children’s 13. March of Dimes, PMNCH, Save the Children, WHO and adolescents’ health (2016–2030). New York: (Howson CP, Kinney M, Lawn JE, editors). Born Every Woman Every Child; 2015. too soon: the global action report on preterm birth. 3. UN IGME. Levels & trends in child mortality: report Geneva: World Health Organization; 2012. 2018. Estimates developed by the United Nations 14. UNICEF, WHO, World Bank Group. Joint child inter-agency group for child mortality estimation malnutrition estimates – levels and trends (2018 (UN IGME). New York: United Nations Children’s edition). Geneva: World Health Organization; 2018. Fund; 2018. 15. UNICEF. UNICEF data: monitoring the situation 4. WHO, UNICEF, World Bank Group. Nurturing care of children and women (https://data.unicef.org/, for early childhood development: a framework for accessed 21 February 2019). helping children survive and thrive to transform 16. WHO, Framework on integrated people-centred health and human potential. Geneva: World Health health services. Report by the secretariat. A67/39. Organization; 2018. Provisional agenda item 16.1. 15 April 2016. Geneva: 5. Moxon SG, Lawn JE, Dickson KE, et al. Inpatient care World Health Organization: 2016. of small and sick newborns: a multi-country analysis 17. Lassi ZS, Majeed A, Rashid S, Yakoob MY, Bhutta of health system bottlenecks and potential solutions. ZA. The interconnections between maternal and BMC Pregnancy Childbirth. 2015;15 Suppl 2:S7. newborn health – evidence and implications for 6. Lawn JE, Blencowe H, Oza S, You D, Lee AC, policy. J Matern Fetal Neonatal Med, 2013. 26 Suppl Waiswa P, et al. Every newborn: progress, priorities, 1: p. 3–53. and potential beyond survival. Lancet, 2014. 18. Nair M, Knight M, Kurinczuk JJ, Risk factors and 384(9938): p. 189–205. newborn outcomes associated with maternal deaths 7. IASC. Definition of complex emergencies. Working in the UK from 2009 to 2013: a national case-control group XVIth meeting, 30 November 1994. Inter- study. BJOG, 2016. 123(10): p. 1654–62. agency standing committee. 1994. 19. Moucheraud C, Worku A, Molla M, Finlay JE, 8. UN. Convention on the rights of the child. United Leaning J, Yamin A. Consequences of maternal Nations general assembly resolution 44/25 of mortality on infant and child survival: a 25-year 20 November 1989 (https://www.ohchr.org/en/ longitudinal analysis in Butajira Ethiopia (1987–2011). professionalinterest/pages/crc.aspx, accessed Reprod Health, 2015. 12 Suppl 1: p. S4. 4 March 2019). 20. Scott S, Kendall L, Gomez P, Howie SR, Zaman SM, 9. UN. General comment No. 15 (2013) on the right of Ceesay S, et al. Effect of maternal death on child the child to the enjoyment of the highest attainable survival in rural West Africa: 25 years of prospective standard of health (art. 24). CRC/C/GC/15. 17 April surveillance data in The Gambia. PLoS One, 2017. 2013 (https://www2.ohchr.org/english/bodies/crc/ 12(2): p. e0172286. docs/gc/crc-c-gc-15_en.doc, accessed 21 February 21. Harewood T, Vallotton CD, Brophy-Herb H. More 2019). than just the breadwinner: the effects of fathers’ 10. Bevilacqua G, Corradi M, Donzelli GP, Fanos V, parenting stress on children’s language and cognitive Gianotti D, Magnani C, et al. The Parma charter of development. Infant and child development, the rights of the newborn. J Matern Fetal Neonatal 2016. 26(2). Med, 2011. 24(1): p. 171. 22. Yogman M, Garfield CF, committee on psychosocial 11. PMNCH, UNFPA, WHO. Abu Dhabi declaration: for aspects of child and family health. Fathers’ roles in every woman every child everywhere. 2015 (http:// the care and development of their children: the role www.everywomaneverychild.org/images/the_ of pediatricians. Pediatrics, 2016. 138(1). abu_dhabi_declaration_feb_2015_7.pdf, accessed 23. O’Brien K, Robson K, Bracht M, Cruz M, Lui K, 21 February 2019). Alvaro R, et al. Effectiveness of family integrated

27 28 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 35. 34. 33. 32. 31. 30. 29. 28. 27. 26. 25. 24.

review oftheevidence Bioscience Horizons: The Marchant A. ‘Neonatesdonotfeel pain’: acritical J Adv Nurs, 2001. 35(1): p.50–8. for improvements inthecareofchildren inhospital. James Robertson: theorists,scientistsandcrusaders Alsop-Shields LandMohay H.John Bowlby and 21 February 2019). (https://nurturing-care.org/?page_id=784, accessed careinIndia.2018family participatory [webpage] PK, Maria A, Kumar H, Ashfaq, Dipti.Profile on Sudan, P, Jhalani,M,Gurnani V, Khera A, Prabhakar p. 1158–1168. randomized controlledtrial.Phys Ther, 2017. 97(12): and neurobehavioral outcomesinpreterminfants: al. Family-centered careimproved medical neonatal Yu YT, Hsieh WS, HsuCH,Lin YJ, LinCH,HsiehS, et p. e278–85. stay andinfant morbidity. Pediatrics, 2010. 125(2): family centeredcarestudy: effects onlengthof Akerstrom S, Brune T, etal. The Stockholm neonatal Ortenstrand A, Westrup B, BrostromEB, SarmanI, 35(1):p.105–15.2006. Nurs, centered care.JObstetGynecolNeonatal individualized, developmentally supportive family- NH, Waddell T, trialon etal.Aquasi-experimental Byers JF, Lowman LB, Francis J, KaigleL,Lutz Indian Pediatr, 2017. 54(6):p.455–459. care ofsick newborns: arandomized controlledtrial. F.Sherwani Family-centered caretocomplement Verma A, Maria A, Pandey RM,HansC, Verma A, 2012. 129(2): p.394–404. centered careandthepediatrician’s role.Pediatrics, Patient-Family-Centered Care.Patient- andfamily- Committee CareandInstitute onHospital for 21 February 2019). ipfcc.org/resources/downloads-tools.html, accessed care: aself-assessmentinventory(http://www. IPFCC. Advancing family-centered newborn intensive 2016. 30(3):p.265–9. intensivein neonatal care.JPerinat Nurs, Neonatal Maree C,Downes F. Trends infamily-centered care 90(12): p.863–7. involvement care.EarlyHumDev, inneonatal 2014. L. Trends incarepracticesreflecting parental Raiskila S, Axelin A, Rapeli S, Vasko I,Lehtonen 2017. 54(6): p.451–452. infants throughfamily-centered care.IndianPediatr, Costello A. Quality, for anddignity preterm equity Adolescent Health,2018. 2(4):p.245–254. cluster-randomised controlledtrial.LancetChild& parent outcomes:amulticentre,multinational, intensivecare inneonatal unitsoninfant and

46. 45. 44. 43. 42. 41. 40. 39. 38. 37. 36. 2018). 2018 (corrected version published20September countries. Lancet.Published online5September a systematic analysis ofamenabledeathsin137 health systems inthe universal healthcoverage era: Saisó S, Salomon JA,duetolow-quality Mortality Kruk ME,Gage AD, Joseph NT, DanaeiG,García- 368(9551): p.2017–2027. in Mexico: thediagonalapproach. Lancet,2006. R, OlaizG,etal.Improvement ofchild survival Sepulveda J, BustreoF, Tapia R,Rivera J, Lozano p.23–36. 2006. Partnership for Maternal,Newborn &ChildHealth; Opportunities for Africa’s newborns. Cape Town: newborn andchild health continuumofcare.In: S, Narayanan I, ShooR,etal. The maternal, de Graft-Johnson J, Kerber K, Tinker A, Otchere 10(5journal, 2006. Suppl):p.S3–11. outcomes: thetimetoact.Maternalandchild health Howse J. Preconception carefor improving perinatal Atrash HK,Johnson K, Adams M,CorderoJF, Policy 20Suppl1:i49–i57. Plan.2005. p.i49–i57. management ofchildhood illnessinBrazil.Health timeandtheintegrated consultation interventions: DB. constraintstotheadoptionofnew Capacity Adam T, Amorim DG,Edwards SJ, Amaral J, Evans Organization; 2005. mother andchild count.Geneva: World Health WHO. World HealthReportmake 2005: every delivery. Lancet,2007. 370(9595):p.1358–1369. newborn, andchild health:fromslogantoservice Starrs A, Lawn JE.Continuumofcarefor maternal, Kerber KJ, deGraft-Johnson JE,Bhutta ZA,Okong P, Care Med,2017. 45(1):p.103–128. pediatric,andadultICU.care intheneonatal, Crit Kross EK,HartJ, etal.Guidelinesfor family-centered Davidson JE, Aslakson RA,Long AC, Puntillo KA, Communication, 2018. 29:p.111–136. newborn healthinMalawi. Journal ofDevelopment social andbehaviour change communicationto Cundale K,etal.Khandandimphatso:applying Banda G,Guenther T, Chavula K,Kinney M, Vaz L, 2015. 3:p.CD007754. outcomes. Cochraneneonatal Syst Database Rev, andimproving andmortality morbidity neonatal packagesintervention for reducingmaternaland Lassi ZSandBhutta ZA.Community-based 2012;44(1):45–54. and conceptual update.JNursScholarsh. painmanagement:anempirical in neonatal Franck LS, OultonK,Bruce E.Parental involvement International Journal ofStudent Research. 2014;7(1). CHAPTER 1 . Now is the time to transform care for newborns for care transform to time the is . Now 47. Dunn PM. Stephane Tarnier (1828–1897), the and cognitive impairment in preterm infants. architect of perinatology in France. Arch Dis Child Cochrane Database Syst Rev, 2015(11): Fetal Neonatal Ed, 2002. 86(2): p. F137–9. p. CD005495. 48. Duxbury M, Adams LR. Nursing research 55. Evans T, Whittingham K, Sanders M, Colditz P, contributions to improve NICU care. Neonatal Boyd RN. Are parenting interventions effective in intensive care: a history of excellence – a improving the relationship between mothers and symposium commemorating child health day. NIH their preterm infants? Infant Behav Dev, 2014. 37(2): Publication No 92-2786, 1985. p. 131–54. 49. Anspach RR. Deciding who lives: fateful choices in 56. Hughes AJ, Redsell SA, Glazebrook C. Motor the intensive-care nursery. Los Angeles: University development interventions for preterm infants: a of California Press; 1997. systematic review and meta-analysis. Pediatrics, 50. Gooding JS, Cooper LG, Blaine AI, Franck LS, Howse 2016. 138(4). JL, Berns SD. Family support and family-centered 57. Morag I, Ohlsson A. Cycled light in the intensive care in the neonatal intensive care unit: origins, care unit for preterm and low birth weight infants. advances, impact. Seminars in perinatology, 2011. Cochrane Database Syst Rev, 2016(8): p. CD006982. 35(1): p. 20–8. 58. Almadhoob A and Ohlsson A. Sound reduction 51. Brandon S, Lindsay M, Lovell-Davis J, Kraemer S. management in the neonatal intensive care unit for “What is wrong with emotional upset?” – 50 years preterm or very low birth weight infants. Cochrane on from the Platt report. Arch Dis Child, 2009. 94(3): Database Syst Rev, 2015. 1: p. CD010333. p. 173–7. 59. Provenzi L, Broso S, Montirosso R. Do mothers 52. Levin A. The mother-infant unit at Tallinn children’s sound good? A systematic review of the effects hospital, Estonia: a truly baby-friendly unit. Birth, of maternal voice exposure on preterm infants’ 1994. 21(1): p. 39–44, discussion 45–6. development. Neurosci Biobehav Rev, 2018. 88: 53. Vaivada T, Gaffey MF, Bhutta ZA. Promoting early p. 42–50. child development with interventions in health and 60. Bergman NJ. The neuroscience of birth – and the nutrition: a systematic review. Pediatrics, 2017. case for zero separation. Curationis, 2014. 37(2): 140(2). p. e1–e4. 54. Spittle A, Orton J, Anderson PJ, Boyd R, Doyle 61. Charpak N, Ruiz JG, Zupan J, Cattaneo A, Figueroa LW. Early developmental intervention programmes Z, Tessier R, et al. Kangaroo mother care: 25 years provided post hospital discharge to prevent motor after. Acta Paediatr, 2005. 94(5): p. 514–22.

CHAPTER 2 CHAPTER 2 . What the numbers say numbers the . What © Jonathan Hyams / Save the Children

What the numbers say

31 32 SURVIVE AND THRIVE: Transforming care for every small and sick newborn • • • KEY MESSAGES costs for parents andfamilies. andreducelong-term psychologicalhuman capital, ill healthandcatastrophic reducedisability,hospitals, provide strongreturns oninvestment by reinforcing intensive carecould, within afew years, halve thenumberofnewborn deathsin preventable –areasensitive ofnewborn indicatorofthequality care.Specialand need intensiveand thrive. careinordertosurvive Long-term disabilities–mostly lifelong humancapitalformillions.Ofthese30millionnewborns, 8–10 million newborns willpreventdisabilities,optimize child development,andincrease each year. Transforming healthsystems toprovide high-qualitycareof Thirty millionsmallandsick newbornsworldwide requirecareinahospital noncommunicable disease. is crucial for reducingdeaths,disability, stunting, andthelong-termriskof congenital abnormalities;and(5)jaundice.Caringfor smallandsick newborns to prioritize are:(1)prematurity;(2)infections;(3)birth complications;(4) Most newborndeathsanddisabilityarepreventable. The leadingcauses affected by emergencies,andfor humanitarian many African nations. need tomorethandoubletheircurrent progress. This isespeciallytrue for those LMICs have madeimpressive progresstowards around40countries thetarget, toreachevery country anNMRof12 deathsorfewer per1000 births. While many period.Just overthe neonatal for adecaderemainstomeettheSDG3.2target month. Nearlyhalf(47%)ofalldeathsinchildren agedunder5years occurin year 1millionnewborns dieontheday oftheirbirth;2.5milliondieinfirst gappossible, toclosethissurvival andthusmeettheSDGtargets.Every unfinished agendaforendingpreventable child deaths.Itisurgent,and ofsmallandsickThe survival newbornsisthemostimportant itemonthe CHAPTER 2 . What the numbers say numbers the . What © Judith McCord / PCI

are for small and sick newborns is central to Survive: end preventable deaths the SDG targets for neonatal and child survival, early child development, human potential, and Targets for 2030 broader social and economic transformation. Looking at the SDGs, it is clear that there are gaps to CImproving a child’s health and life chances also benefits close. Progress for survival has been slow around the future generations. time of birth when 5.4 million women and newborns die annually. This includes 2.5 million newborns who In Chapter 1 the connections between maternal and die within the first 28 days of life; 2.6 million who are newborn health and all the SDGs were explored. This stillborn; and 303 000 mothers who die. Most of these chapter looks at currently available data that can help in deaths occur in the poorest families in the poorest coun- transforming care for small and sick newborns. Data are tries, and most are preventable (5). An estimated 2.9 categorized under the headings: “Survive”, “Thrive”, and million women, stillbirths and newborns could be saved “Transform” (Table 2.1). every year (compared with the 2016 baseline) through

Table 2.1 Global and national targets relevant to small and sick newborns

SURVIVE THRIVE TRANSFORM End preventable deaths Ensure health and well-being Expand enabling environments

SDG targets SDG 3.2: By 2030, reduce SDG 3 and the Comprehensive SDG 3.8: Achieve universal health neonatal mortality to at implementation plan on maternal, coverage by 2030 least as low as 12 deaths infant and young child nutrition: SDG 5: Achieve gender equality, per 1000 live births; and By 2025, reduce low birth weight empower all women, end gender- under-5 mortality to at by 30% based violence least as low as 25 deaths SDG 4.2: By 2030, ensure all girls per 1000 live births and boys have access to quality early childhood development care and pre-primary education

What data Neonatal mortality rates Birth weight and growth metrics Birth and death registration are needed Under-5 mortality rates Gestational age Maternal and perinatal death to track for surveillance and response newborn Stratified by sex, Neonatal morbidity and health? socioeconomic status, impairment outcomes Routine measurement of: urban/rural location, etc. Child development measures • Coverage and quality of care, including family-centred care; • Service readiness for small and sick newborn care; and • Child development and disability.

Sources: SDGs (1), Every Newborn (2), QED (3), Every Newborn measurement improvement roadmap (4).

33 34 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Amy Fowler / USAID 1 (see or politicalinstability Table 3.2)(7). experienced crises, such recent humanitarian asconflict countries withthehighestNMRs intheworld, 11 have sub-Saharan Africa; 2areinSouthern Asia (7).Ofthe16 10 countrieswherenewborns aremostatrisk,8in (per 1000 live births)inJapan, to44inPakistan. Ofthe significantlybetweencountries,from0.9 NMRs vary Where are newborns mostatrisk ofdying? Newborntoreducethesedeaths(7). Every targets Almost allofthesecountrieshaveCongo (98000). set andDemocraticRepublic ofthe Pakistan (241000) Nigeria (241 000), deaths:India(605000), all neonatal deaths with4countriesaccountingfor almosthalf of Worldwide, 12 LMICs accountfor twothirdsofneonatal in LMICs;78%sub-Saharan Africa andSouthern Asia. In 2017, deathsglobally(98%)occurred mostneonatal Where domostdeathsoccur? Current status reduce stillbirthsto12 orfewer per1000 births(2). total 12 orfewer deathsper1000 live birthsby 2030,andto 2.1). toreduceitsNMR This isfor everycountry target target (6),alsoincludedintheSDGs(Tablespecific NMR aims toendpreventable deaths,setting thefirst ever NewbornAs notedinChapter1,theEvery Action Plan and for smallandsick newborns (Figure6.1). improved universal coverage careatbirth ofhigh-quality Countries withfewer than10 birthsperyear arenotincluded inthisanalysis. 000 (8.7%) andBelarus (8.2%) in reducingNMRsoverall areChina(8.9%),Estonia (AARR) of5.1%.Countriesmakingthefastest progress NMR from39to16 –anaverage annualrateofreduction fastest progressduring2000–2017, reducingitsnational For example, Rwanda, insub-Saharan Africa, madethe 2.1). ress thatneighbouringcountriescanlearnfrom(Fig. However, makingrapidprog- everyregionhasacountry of 84%inEastern Asia, to41%insub-Saharan Africa. regionalvariationstantial since1990, fromareduction Progress hasshown inratesofnewborn survival sub- tries inSouthern Asia andinHICs. sub-Saharan Africa tomorethan60%inseveral coun- period,rangingfromapproximatelythe neonatal 37%in Currently, almosthalfofchild deathsgloballyoccurin 5 years periodhasrisen. thatoccurintheneonatal a result,theproportionofdeathsinchildren agedunder the drophasbeenslower thanthatfor olderchildren. As there hasbeenawelcomemortality, dropinneonatal life to5years ofagereducedby 63%. Thus, although ratesinchildrentrast, mortality after thefirstmonthof from 37to18 deathsper1000 live births(7).Bycon- From 1990 to2017, theglobalNMRdecreasedby 51%, Where hasthefastest progress beenmade? that countriesaremakingtowards UHC. These recent The nationalNMRs provide anindicationoftheprogress but alsotothechoices madeinspendingthatwealth. progress was notdue solelytoincreasednationalwealth formed othercountrieswithhigherincreasesin GNI. Thus, and increasedgrossnationalincome(GNI),they outper one decade. While thesecountriessaw economicgrowth succeededinabout as China,GeorgiaandKazakhstan, deaths per1000 live births;however somecountries,such decades toimprove theirNMRsfrom20 tofewer than12 In mostrapidlyprogressingcountriesithastakenseveral population-level coverage ofintensive newborn care(8). their NMRtofewer than 15 deathsper1000 withouthigh supportforhasreduced pretermnewborns.tory Nocountry scale-up ofmoreintensive newborn care,includingventila- obstetric careandspecialnewborn care,andinvested in plar countries(includingRwanda andMalawi) improved their NMRs below 20,apartfromRwanda andMalawi. All exem- with in2000 Chapter 1).Mostofthesecountriesstarted fromtheUSAseen indata andtheUnitedKingdom(8)(See associated withprogressreflect thesamethreephases These “exemplar” countriesdemonstratethatthefactors 1

(7). - CHAPTER 2

Fig. 2.1 Average annual neonatal mortality rate reduction (2000–2017), say numbers the . What highlighting the countries making fastest progress and the fastest in each region

North America, Europe Estonia (8.7%) Western Asia Georgia (7%) Central Asia Kazakhstan (8.1%)

Northern Africa Tunisia (5.1%) Eastern Asia China (8.9%)

Southern Asia Bangladesh (4.9%) Latin America and Caribbean Sub-Saharan Africa South-Eastern Asia Nicaragua (4.9%) Rwanda (5.1%) and Oceania Cambodia (5.1%)

Australia and New Zealand Australia (3.0%)

10 fastest progressors globally Average annual rate of reduction in neonatal mortality rate, UNTR AARR of NR 2000−2017 (%) ina Esonia >4 elars 3−4 aaksan 2−3 eorgia <2 avia No data Trkey Sadi Arabia Regional fastest progressor Aerbaian Country (AARR of NMR in %) Rssian ederaion

AARR = average annual rate of reduction; NMR = neonatal mortality rate per 1000 live births. Projections are not provided for countries with high HIV rates as the AARR is more uncertain. Countries with fewer than 10 000 births per year are not included. Data taken from: United Nations Inter-agency Group for Child Mortality Estimation. Estimates for AARR for NMR 2000–2017 (7).

country examples, as well as the historical data, show making good progress (Fig. 2.1). Assuming that the that countries need to plan now to implement intensive same AARR per country can be achieved as during newborn care. Countries with NMRs higher than 30 and 2000–2017, all regions could reach an NMR of 12 deaths with most births occurring at home can make most prog- or fewer per 1000 live births by 2030 – apart from ress by improving obstetric care and special newborn Southern Asia (predicted to achieve this by 2042) and care, and by planning for their health systems to make sub-Saharan Africa (by 2050) (Fig. 2.2). the transition towards intensive newborn care, avoiding a major delay in achieving the SDG target. Countries making the slowest progress are found in sub-Saharan Africa or Southern Asia; all need to at least Which regions and countries need double their rate of progress to be on track to achieve to make the most progress? the 2030 national target of 12 neonatal deaths per 1000 Although sub-Saharan Africa has the highest risk (highest live births (Fig. 2.2). In general, countries that are cur- NMR) and the slowest progress (lowest AARR), a few rently least likely to meet their targets are those affected countries, such as the regional leader, Rwanda, are by humanitarian crises (see Chapter 6).

35 36 SURVIVE AND THRIVE: Transforming care for every small and sick newborn updated analysis was undertakenfor thisreportbased that allcitizens have thebestchance ofsurvival. An principlewithintheirown equity countries,toensure Governments toapplythis needtobeaccountable 2.2). Zealand (Fig. in Northern America, Europeor Australia andNew Africa hasthesamechance as a newborn ofsurvival be thenext before century anewborn insub-Saharan births. However, atthecurrent rateof progress,itwill NMR of3newborn deaths(orfewer) per1000 live chance asthosebornincountries withan ofsurvival between countries,allnewborns would have thesame no oneisleft behind.Ifthisprinciple were applied The gapsothat SDGeraaspirestoclosetheequity and withincountries Closing theequitygap between neonatal mortality rate(NMR)forneonatal mortality high-incomecountries Fig. 2.2Projected year thateach regionwillreach SDGnationaltargetandequal theaverage Neonatal mortality rate (deaths per 1000 live births) estimates forNMRARR2000–2017(7). Source: AnalysisupdatefromTheLancetEveryNewborn(6).Datatakenfrom:UnitedNationsInter-agencyGroupforChildMortalityEstimation and aggregatedtotheregionallevels.After2030countrieswithpopulationslessthan90000inhabitantsin2017arenotinclu Note: TheprojectionsarecalculatedatthecountrylevelusingAARR2000–2017andconstrainedtonotexceedprojected 10 15 20 25 30 35 40 45 50 55 60 0 5 1990 2000 Eastern Asia Central Asia Northern Africa Sub-Saharan Africa Southern Asia We 2010 stern Asia 2020 2030

2040 SDG ofNMR=12by2030 North America,Europe,AustraliaandNewZealand Latin AmericaandtheCaribbean (excl. AustraliaandNewZealand) South-Eastern AsiaandOceania NMR 12(SDG)~2042 Southern Asia and poorestquintiles. smallgapbetween therichestEthiopia, there isavery countries,suchIn certain asMozambique,Chadand (57%), Indonesia(53%), Angola (50%)andIndia(48%). tions tomake areJordan (64%),DominicanRepublic Countrieswiththelargest relativeSDG target. reduc- these countriesandaccelerate progresstoachieving the fewerresult inapproximately000 500 deathsin neonatal gapwithinthesecountrieswould Closing theequity those countrieswould bereducedby a medianof16%. death astherichest 20%ofthepopulation,NMRin hadthesameriskofneonatal households inacountry of 12 deathsper1000 live births.Inthisanalysis, ifall deaths, andhaving anNMRhigherthantheSDGtarget countries, accountingfor morethan84%ofallneonatal from63 data recent DemographicandHealthSurvey on The Newborn LancetEvery analyses, usingthemost 2050 NMR 12(SDG)~2050 Sub-Saharan Africa 2060 SDG targetatnationallevel(NMR<=12) 2070 2080 High-income countries ded intheregionalaggregates. under-5 mortalityrate average (NMR=3) 2090 2100 CHAPTER 2 . What the numbers say numbers the . What

Box 2.1 Nepal expected to reach target for newborn mortality, but inequity may increase

The current national trend in NMR reduction in Nepal shows different rates of progress between socio- is one of the fastest in Southern Asia. Nepal reduced economic groups (wealth quintiles). The target of 12 neonatal mortality by more than half between 1990 deaths per 1000 live births was achieved within the and 2015 by making changes to policy-making, wealthiest groups in 2016. If the pace of AARR in all strengthening the health system, and challenging wealth groups continues, Nepal will reach the national social norms regarding care for mothers and new- NMR target in 2029, ahead of the SDG deadline. borns. Further investment has been pledged by However, this will mask inequities between socioeco- government and international agencies as a part of nomic groups. The poorest groups in Nepal currently Nepal’s Every Newborn Action Plan. have an AARR of 2%. If this does not improve they will not reach the target until 2068. To counter this requires Evidence from the four demographic and health stronger focus on the rural poor. surveys conducted in Nepal between 2001 and 2016

Fig. 2.3 Progress in Nepal towards the neonatal mortality target, by income quintile

60 55 50 45 40 35 INCOME QUINTILES 30 Poorest (lowest quintile) 25 Second 20

15 SDG target (NMR<=12) Middle Average 10 Fourth 5 High-income countries average (NMR=3) Richest (highest quintile) Lowest Second Middle Fourth Highest Average Neonatal mortality rate (deaths per 1000 live births) 0 2001 2006 2011 2016 2017 2018 2019 2020 2021 2022 2023 202 2025 2026 2027 202 2029 2030

4 8 Year

SDG of NMR = 12 by 2030 Source: Ashish, Sato, Thapa, et al. Time trends and risk factors associated with neonatal death; projection of neonatal mortality rate for 2030 in Nepal. (Under review) Maternal and Child Health J, 2019 (11).

For the more than 100 United Nations Member States Where to focus: at home or in hospital? that have already achieved the SDG target of fewer than The place of birth has changed in the past two decades. 12 deaths per 1000 live births, the SDGs encourage Globally, more than 80% of all births now occur with setting country-specific targets, with an emphasis on a skilled birth attendant and almost all births occur in reducing inequalities. Closing these gaps will require hospitals (12), compared with 62% in 2000 (6) with the contextual data and analyses to identify which individu- fastest change in LMICs. However, 44 million births als and populations are lagging behind. The rural poor, each year still occur outside health facilities, almost all the urban poor and certain ethnic groups are likely to be without a skilled attendant (13). among those most in need (9, 10). Nepal is an example of successful national progress, but it also shows that The equity gap has widened in some countries, driven reaching the NMR target within all population groups partly by the urban–rural divide. For example, analysis will be challenging (see Box 2.1 and Fig.2.3). from 56 countries (of 75 countries with available survey

37 38 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 2 show thatonly41% ofnewborns were female (15). care units(SNCUs)withmore than1millionadmissions the 2017–2018 specialnewborn fromnearly700 data advantage.Fortheir biologicalsurvival example, inIndia, than boys, orreceive suboptimalcare,losingorreversing After birth,newborn girls may have lessaccesstocare where amalechild isvalued morehighlythanafemale. be basedonthesex ofthefetus, especiallyinsettings terminationofpregnancymay of ultrasoundscreening, at increasedsocialrisk. theincreasedavailability With However, insomecultures newborn andoldergirlsare periodthandogirls(6). the neonatal (42% higher).Hence,boys have ahigherriskofdeathin higher); andintrapartum-related encephalopathy neonatal higher thanfemales); severe infection neonatal (12% borns. Such complicationsincludepretermbirth(14% complications thatcontributetodeaththanfemale new Male newborns areathigherbiologicalriskofneonatal Boys orgirls? (1 million)ontheday ofbirth(14) . deaths occurduringthefirst week oflife, with36% economic settings (6). An estimated73%ofallneonatal day andweek oflife isconsistent acrossregionsand risk. The proportionofdeathsthatoccurduringthe first The first week oflife for anewborn isthetimeofhighest When to focus? trackeddata, by theCountdown to2030 life-threatening delays (seealsoChapters3,4and5). toreduce linked tocommunicationsandtransportservices andare are equippedandreadytoprovide services, quality The greatestpotentialfor rapidimpactistoensurehospitals context-specific andhealthsystem strategies. community ofcarecanbeimproved.access andquality This willinform Improved areneededonwherenewborns data dieandhow doing so;afew minutes’ delay canmake adifference. because motherscannotaccesscareoraredelayed in death andintrapartumNeonatal stillbirthsoften occur such aspre-discharge checklists. hospital lower, withopportunities toimprove throughapproaches problem (6).Postnatal carefor mothersandnewborns is showing thatwealth-related isasignificant inequality and poorest,withzerois59%, indicatingnoinequality) (acalculationofthegapbetweenrichestinequality median gapof35%betweenthetwo. The slopeindex of to skilledbirthattendance thanrural women, witha shows thaturbanwomen have much greateraccess See: http://countdown2030.org. 2 partnership) partnership)

- related tohygiene, especiallythroughtheumbilicalcord. due toinfections, often causedatthetimeofbirthor deathsare crises,halfofneonatal humanitarian notably weeks’ (17) gestation) settings,. Inthehighestmortality ofthosewhodiearealmostatterm(32–37 majority is under25weeks (four monthspreterm).InLICs,the ageofthosewhodie care, thepredominantgestational immaturity. However, intensive inHICswithneonatal is directpretermcomplications,especiallyrespiratory 2.5). Inallcountries,theleadingcauseofdeath (Fig. The causeofdeathprofile varies dependingoncontext conditions(11%)tions (23%);andcongenital (7, 16). ously referred toasbirthasphyxia) infec (24%);neonatal - (previ- birth complications,mainlythroughbraininjury newborn deathsare:prematurity (35%);intrapartum or 2.4). the leadingcause(Fig. The four maincausesof children under5years ofage,withpretermbirths conditions accountfor Neonatal 47%ofdeathsin should beprioritized? Which conditionsaffecting newborns such as highermaternalage,infertility treatments(higher over time, risingpretermbirthratesarerelatedtofactors individual countries.Insettings withmorereliabledata to 13.4% inNorth Africa, withfar greatervariation among birth ratesrangefrom8.7% in theEuropeanregiontoup birth issignificantacrossallincomesettings. Preterm China, BrazilandtheUSA, demonstratingthatpreterm with thelargestnumbersofpretermbirthsincludeIndia, is similartothe2010 WHO estimates(18) . Countries million pretermbirths:about11% ofalllive births,which Cases: Globalestimatesfor 2014 of14.8 reportatotal factor deaths(17) inmorethanhalfofallneonatal . in particularmoderatepreterm(32–36weeks), isarisk especially infections. Based on estimates,pretermbirth, increases anewborn’s riskofdeathduetoothercauses, such complications,pretermbirthgreatly asrespiratory stays.tal Inadditiontodirectprematurity complications, 100 after period,often 000 theneonatal after longhospi- periodandmorethan intheneonatal mately 909000 later life (16). The numberofdeathsincludeapproxi- andnoncommunicablediseasesin including disability causeoflong-termill-health, andanimportant mortality preterm birthisnow theleadingcauseofchildhood Deaths: Condition 1: Preterm birth threaten newborns The critical conditions thatmost With anestimated1.01With milliondeathsperyear, CHAPTER 2

Fig. 2.4 Global causes of death in children under 5 years of age say numbers the . What

AIDS 1% Diarrhoea Preterm birth Preterm birth now top cause 8% complications of child under 5 deaths Malaria 16% Also important cause of 5% disability and loss of human capital

Pneumonia Intrapartum 13% related 11% 47% neonatal Postneonatal Sepsis & congenital meningitis 4% 7% Pneumonia Neonatal infections Other 3% postneonatal Tetanus 12% 1% Congenital 5% Injury Neonatal 6% Postneonatal Other complication 5% 3%

Source: Analysis update from The Lancet Every Newborn (6). Source: Data from WHO estimates for 196 countries for neonatal cause of death on WHO Global Observatory (16). Updated analyses for 2016 by Shefali Oza with Joy Lawn. NMRs from United Nations Inter-agency Group for Child Mortality Estimation (7).

Fig. 2.5 Global variation in cause of neonatal deaths, by level of neonatal mortality rate (NMR) (2016)

40 Other 35 Congenital

30 Diarrhoea

Tetanus 25 Pneumonia 20 Sepsis

15 Preterm Intrapartum-related 10

5 Cause-specic neonatal mortality per 1000 live births

0 <5 5-14 15-29 ≥30 Countries grouped according to their NMR level

39 40 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Karen Kasmauski lose theirbaby (22). atany gestation baby before 24weeks’ and16% gestation, lesslikely to experience pretermbirth,19% lesslikely tolosetheir with medical-ledorsharedcare,are24%lesslikely to ofcarefromamidwifecontinuity they know, compared (20). Evidenceshows thatwomen whohave received have shown little impactonpreventing pretermbirth nancy and by treatinginfections, such asmalaria,duringpreg- beyond 18 years, oravoiding pregnancyafter 35years); family planning(especiallyby delaying firstpregnancy birth, especiallyinlow-income settings, through notably (20). However, thereareopportunities toprevent preterm rates andlimitedscopefor preventing pretermbirths show with reliabletrenddata increasesinpretermbirth supportsuching ventilatory asCPAP (5).Mostcountries avoided withspecialandintensive newborn care,includ- treatment supportedby KMC.More than90%would be viding warmth, feeding support,infection prevention, and to halfofpretermdeathswould beaverted throughpro- primarily throughbetter careofpretermnewborns. Up have progress inreducingpretermmortality doneso Potential for impact: All countriesthathave made ean sections,which may beperformed tooearly(18–19). rates ofmultiplebirths)andagreaternumbercaesar . Nutritional interventions during pregnancy duringpregnancy (21). Nutritionalinterventions - cause of neonatal morbidity and mortality but also of butalsoof andmortality morbidity cause ofneonatal B Streptococcus,which isnotonlytheleadinginfectious pregnant women worldwide are “colonized” withGroup GroupBStreptococcus birth, notably usually consideredtobefrommaternalcarriage, orduring sepsis(i.e.onsetduringfirst72hoursafternatal birth)is Staphylococcus aureusand after 72hours)andincludeEscherichia Coli,Klebsiella, ence themainpathogensfor lateonsetsepsis(i.e. infections Hospital-acquired microbial resistance. influ- help guideantibioticchoices, especiallyinaneraofanti about differences betweenregionsandcountrieswould especially in Africa. Better andavailability quality ofdata prevention arelacking andtreatment,yet data fromLMICs, on organismscausinginfections isessentialfor effective of6.7million(23).Information America suggestatotal newborns for sub-Saharan Africa, Southern Asia andLatin Cases: severe bacterialinfections (16). deathsperyear globallyareduetoneonatal 554 000 tributors totheglobalburdenofdisease. An estimated con- sepsis, meningitisandpneumonia–allimportant deaths fromthreeclinicallydefinedsyndromes:neonatal Deaths: Severe bacterialinfections innewborns include Condition 2: Neonatalinfections Estimates ofpossiblesevere bacterialinfection in can benon-specific anddifficult todetect. of lives. However, signs ofnewborn infection treatment couldsave hundredsofthousands and managementwithappropriate antibiotic as maternalimmunization. Timely diagnosis sion, asisinnovation inpromisingareassuch preterm newborns who face long-termadmis- especially forinfections hospital-acquired by of care(seeBox 2.2).Prevention iscrucial, infection prevention andcontrolquality numerous challenges, particularly intermsof prevented deathsduetoinfectionsneonatal couldbe Newborn seriesestimatesthat84%of Potential for impact: for adeveloping amaternalvaccine (25,26). of higherrisk. All ofthismakes astrongcase and islikely toincreaseantibioticuseatatime is notfeasiblecapacity, withouthighlaboratory late-onset the USA. However, thisstrategy willnotreduce has beenimplementedinseveral HICs,notably to prevent GroupBStreptococcusinfections preterm birth.Intrapartum antibioticprophylaxis maternal sepsis,stillbirthsandprobablyof or stillbirths, Group BStreptococcusorstillbirths, (6). However inLICsface hospitals Candida spp.Earlyonsetneo- Every The LancetEvery . Some 21 million (24). Some21million CHAPTER 2 . What the numbers say numbers the . What

Box 2.2 Hospital-acquired infections and antimicrobial resistance in a newborn care unit in West Africa

In sub-Saharan Africa, more than half of births Burkholderia cepacia and of multi-drug-resistant occur in hospitals. Unfortunately, hospitals vary Klebsiella pneumoniae. Both outbreaks were traced widely in quality of care, and many present unclean to contaminated intravenous fluids and antibiotics environments and poor infection-control practices. on the neonatal ward. Presumed severe bacterial infections account for Infections are a major problem for hospitalized new- almost half of neonatal admissions at Gambia’s borns in LIC settings. Routine blood cultures, lumbar largest referral hospital. Nearly all newborns routinely receive antibiotics, yet only 1–2% undergo punctures and antibiotic stewardship (i.e. optimizing microbiological investigations for infection. A treatment of infections while reducing problems hospital-based case–control study was carried out associated with antibiotic use) should be priorities, to identify organisms causing serious neonatal with standardized protocols to manage newborn con- infection. Staphylococcus aureus was the predom- ditions. Innovations include simpler bedside diagnos- inant bacterial isolate, but most infections were tics. New antibiotics and immunizations are urgently due to Gram-negative or nosocomial outbreaks of required, and more research in this area is needed.

Source: Okomo. PhD thesis (27).

WHO recommends antibiotic treatment for all suspected Potential for impact: Almost 80% of neonatal deaths sepsis cases, but it is likely that less than 25% of these due to intrapartum-related complications could be infants actually have severe bacterial infection. averted through primary prevention with obstetric care. Secondary prevention with resuscitation and supportive Condition 3: Intrapartum trauma care for those with neonatal encephalopathy is important or birth complications but less effective than prevention (5). Deaths: Intrapartum trauma or birth complications account for an estimated 627 000 neonatal deaths Condition 4: Congenital conditions annually (28, 29), making this the second leading cause Deaths and cases: Globally, 9% of under-5 deaths of neonatal deaths globally. are attributed to congenital anomalies, around 60% of them in the neonatal period (16). Most of these deaths Cases: An estimated 5–10% of newborns (7–14 million (96%) occur in LMICs. There are four major causes: per year) require some stimulation immediately after cleft lip and palate, congenital heart anomalies, abdom- birth to help initiate breathing. Approximately 6 million inal malformations and neural tube defects (32). These newborns per year require basic resuscitation, includ- result in many years lived with disability. In the past 15 ing bag and mask pressure ventilation. A much smaller years, deaths due to congenital conditions have reduced number (< 1% of births) may require advanced newborn at a slower rate than any other cause of neonatal and resuscitation, including intubation, chest compressions under-5 deaths. or medications. These newborns may also be very preterm or have a serious brain injury that warrants Potential for impact: Two thirds of deaths due to ongoing inpatient newborn care (30). these conditions are treatable with paediatric surgery and neonatal intensive care (32). Additionally, there are In 2010, an estimated 1.15 million newborns developed important primary prevention strategies that are feasible neonatal encephalopathy associated with intrapartum at scale. These include folic acid fortification (which can events (30). Newborns with neonatal encephalopathy prevent more than 50% of neural tube defects such as show varying levels of consciousness, often accom- spina bifida(33) ), rubella immunization (congenital rubella panied by seizures, which require ongoing inpatient syndrome causes heart defects, cataract and deafness), care (e.g. feeding support and anticonvulsants) (31). and genetic counselling. There is growing recognition of Newborns who are already growth-restricted are much the importance of establishing national and regional sur- more at risk of neonatal encephalopathy, especially if veillance systems of birth defects to better guide public there is also an ascending infection. health action (see Box 2.3).

41 42 SURVIVE AND THRIVE: Transforming care for every small and sick newborn cost-effective inregionswithprevalence greater than5%. using abloodspot hasbeenshown tobeeffective andis globulins. Regarding G6PDdeficiency, screening neonatal critical challenge islack oflow-cost antirhesusimmuno- will bemoresevere witheach subsequent pregnancy. A autoimmune breakdown ofthebloodandjaundice,which tum antirhesusimmunoglobulin injection. This willprevent group thatisrhesus-negative andadministering apostpar Prevention includesidentifying women withablood jaundice andgivingphototherapy ifneeded. see jaundice.Effective carerequiresdevices for testing newborns ofreturning abouttheimportance earlyifthey requiring treatmentandinform families withat-risk and theirnewborns would helpidentifyearlyjaundice Potential for impact: Pre-discharge checks of women higher prevalence ofG6PDdeficiency(35). higher risksofsevere jaundicein West Africa relatedto rological impairments. The burdenvaries regionally, with withmoderateorsevere survive long-termneu- 63 000 and termnewborns annually;114 dieandmorethan 000 > 25mg/dL)isestimatedtoaffect late-preterm 481000 Deaths andcases:Extremelysevere jaundice(bilirubin drogenase (G6PD)deficiency). (such asrhesusdisease,orglucose-6-phosphatedehy is causedby prematurity, infections and/orhaemolysis or long-termneurodevelopmental impairments.Jaundice (kernicterus)rubin-induced braininjury resultingindeath jaundicemayNeonatal besevere enoughtocausebili- Condition 5: Jaundice Source: Yunis K,etal.(Underreview) IntJEpidemiol,2019 (34). Mediterranean commissionedasituational analysis The WHO RegionalOffice for theEastern needed to provide abasisfor prevention andcare. ronmental orotherexposures (e.g. Zika virus), are detection ofclusters, which may bedueto envi - factor. Data ontypesofbirth defects aswell asthe consanguineous marriages, which isamajorrisk Eastern Mediterranean, aregion withahighrate of care ofnewborns. This isespeciallyrelevant inthe (birth defects) are ofincreasing importance inthe in theneonatalperiod, congenital abnormalities and agreater proportion ofunder-5 deathsoccurring With reduced mortality dueto infectious diseases, Box 2.3CongenitalabnormalitiesintheEasternMediterraneanRegion - - occurred among smallnewborns, ofwhich 65%were Potential for deaths impact:Morethan80% ofneonatal riskafter period. increased mortality theneonatal 6). All pretermand SGA newborns alsohave anongoing both pretermandSGA are15 timesmorelikely todie(3, with theirtermnormal-sized peers.Newborns whoare age have atwo-fold deathcompared riskofneonatal Newborns whoaretermyet alsosmall for gestational comparedwithtermnewborns. mortality risk ofneonatal 32 and37weeks’ have gestation atleastaseven-fold newborn care.Moderatelypremature newborns between than 28weeks’ whodonotreceive gestation intensive for newborns death, withmorethan95%mortality less premature newborns have thehighestriskofneonatal of alower lessthan28weeks). age(e.g. gestational Very also simplistic,astheriskismuch higherfor newborns size. The pretermdefinitionofathreshold at37 weeks is is simplisticgiven thatriskvaries continuouslywithbirth andmorbidity,the highestriskofmortality althoughthis For centuries, LBW hasbeenusedasathresholdtomark and onethirdissmallforage(SGA) gestational (6,36). occur toLBW newborns, ofwhich twothirdsarepreterm deaths(80%) a combinationofthetwo.Mostneonatal causes: pretermbirthorinuterogrowth restriction,or out theirlifetime. Being bornsmallisduetotwodifferent cations; andjaundice.Itmay alsoincreaserisksthrough- the leadingcauses:prematurity; infections; birthcompli- periodfromoneof utero, duringbirthandintheneonatal Being smallputsachild atthehighestriskofdyingin Small newborns, big problem planning andfamily support. should alsobeusedfor enhanced prevention, service and integrate itinto routine systems. These data establish surveillance for congenital abnormalities and civilsocietyorganizations needto collaborate to Governments, localinstitutions, nongovernmental limited humanresources, infrastructure and funding. management information systems (HMIS), aswell as effective surveillance existincludinginadequate health conduct surveillance, andthatmultiplebarriers to analysis suggests thatless thanhalfofthecountries to assessbirth defect surveillance in22countries. The CHAPTER 2 . What the numbers say numbers the . What attributable to preterm and 19% to term SGA. Globally, 20 conditions. Many may require inpatient care for weeks million LBW infants are born each year (37). The SDGs and at a time and some, especially the extremely preterm Global Nutrition Plan include an ambitious goal to reduce newborns, may be inpatients for longer. Yet many with LBW by 30% by 2025, although new trend data suggest life-threatening conditions do not receive even basic very limited progress. Treatment for infections and non- warmth and feeding support (see Chapter 3). communicable diseases during pregnancy and improved nutrition for young and adolescent girls have potential as In 2010, an estimated 14.8 million infants were born interventions with significant impact. In the meantime, it preterm (i.e. less than 37 weeks’ gestation). This repre- is possible to achieve major and rapid reduction of mortal- sented 10.6%, and in some countries more than 15%, ity through improved care for all small newborns (5). of all live births (18, 19). Even moderate to late preterm infants (32–37 weeks’ gestation) have an increased risk of immediate complications, and neonatal and infant death. Thrive: ensure their health and well-being Those who survive to 2 years of age are three times more likely to have language and motor delays, twice as likely to How many small and sick newborns? have delays in cognitive development, and likely to have More than 30 million small and sick newborns have poorer social-emotional skills than infants born at term. life-threatening conditions and require inpatient care in hospitals (Table 2.2). An estimated 8–10 million new- Preventing disability and borns require intensive care, notably respiratory support. optimizing child development This includes preterm newborns with complications, Most disabilities among newborns born after 25 weeks’ intrapartum-related brain injury, severe bacterial infec- gestation are preventable, although risk of death or dis- tion, pathological jaundice and those with congenital ability varies greatly depending on where the birth takes

Table 2.2 Estimates of small and sick newborns who need hospital care and intensive newborn care

Condition Estimated numbers per year globally (unless otherwise specified)

Prematurity 14.8 million preterm newborns (18, 19) Less than 37 completed 2.3 million are < 32 weeks’ gestation, the majority of whom need intensive newborn weeks’ gestation care, especially ventilatory support for preterm respiratory complications

Severe infections (sepsis, 6.9 million in LMICs with possible severe bacterial infections meningitis, pneumonia) Approximately 3 million may need intensive care (23)

Intrapartum injury 7–14 million who need basic resuscitation at birth 1.2 million with moderate or severe neonatal encephalopathy/hypoxic ischaemic encephalopathy who need intensive care (30)

Jaundice 481 000 term or near-term newborns who require phototherapy and/or exchange transfusion for severe jaundice (35)

Congenital abnormalities 1.3 million including congenital heart disease, neural tube defects, orofacial clefts and other major abnormalities likely to present in the neonatal period and requiring care, including paediatric surgery (39)

TOTAL > 30 million* require hospital care at least initially, of whom approximately 8–10 million require intensive inpatient care

* Based on estimates of births in 2016. Note: due to co-morbidity, especially of preterm cases in which newborns need resuscitation, the lower level of basic resuscitation needs (7 million) is conservative. An additional 10.4 million LBW and SGA newborns (36) are at increased risk of death but have not been added to the total to avoid double counting with other cases, especially infections and birth complications.

43 44 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Fig. 2.7Deathanddisability:thefour worlds intowhich 140 millionarebornannually intensive care(40). those withsevere without complicationsdonotsurvive live islesscommonbecause,currently, births),disability dle-income settings (NMR≥15 withhighermortality per inHICs.Inmostlow-double thatobserved andmid- at28–32weeks’the riskofdisability isnearly gestation In MICs,althoughprogresshasbeenmadeinsurvival, effective follow-up. of disability, stronglyinfluencedofcareand by quality sive care.Between HICs,thereisvariability intherisk under 25weeks,withinten- morethanhalfwillsurvive and thrive. survive Even atextreme viability gestational complications. Morethan95%ofpretermnewborns available,is typically few full-termnewborns develop intrapartumbirths), wherehigh-quality andnewborn care 2.6).InHICs(withNMR<5per1000place (Fig. live ~44 millionbirthsathome especially humanitariansettings Low andmiddleincomecountries, ~12 millionbirths High incomecountries Figure updatedfrom: BeyondNewbornSurvival(38);and TheLancetEveryNewbornseries(6) updated with2017 dataregardingplaceofbirth. Many morewithlostpotential 2.5 millionneonataldeaths for childdevelopment ~1.3 millionsurvivors 140 millionbirths with majordisability per year MICs andespeciallyinLICs(40). An estimated184 700 behavioural impairments;thesemay beunder-reported in or suboptimalchild development, such aslearningor impairment. There aremorechildren withmilderdisabilities have An additional567000 mildneurodevelopmental to severe neurodevelopmental impairment,mostlyinMICs. annually,survivors areestimatedtohave 345000 moderate Disability after preterm birth: Of13 millionpretermbirth socioeconomic needs(seeChapter4). lies withadditionmedical,psychosocial, educationaland care quality, andmay placealong-termburdenonfami- isanevenable. Disability moresensitive measureof toemphasizeispreventimportant thatmostdisability - butitis amongsurvivors, phase ofhigherdisability care iswidelyavailable, countriesmay experience a As deathsarereduced,andespeciallyonceintensive ~39 millionbirths Middle incomecountries ~45 millionbirthsinhospitals Low andmiddleincomecountries CHAPTER 2 . What the numbers say numbers the . What

Box 2.4 Retinopathy of prematurity: a major cause of preventable blindness in Latin America and the Caribbean

Over the past decade, retinopathy of prematurity national incidence of the condition and assess four has emerged as a leading cause of blindness government inputs: existing national policies, guide- and visual impairment among children in MICs, lines, programmes and financing. The results show particularly in Latin America and Eastern Europe. great disparity in the coverage of legislation and Approximately 10% of retinopathy of prematurity national data collection systems used for monitoring cases resulted in blindness or severe visual impair- of the condition. Only two countries in the study ment, most likely caused by the most acute stages of reported having all four national-level government the disease and the absence of advanced treatment. inputs on retinopathy of prematurity. Countries with Yet in HICs, retinopathy of prematurity now rarely three or four national-level inputs averaged 95% of causes blindness due to improved prevention and eligible newborns screened, while those with only early detection and treatment. one or two national-level inputs averaged 35%. Until recently, data on retinopathy of prematurity Standard criteria are required to help health-care pro- across Latin America and Caribbean countries only viders identify all newborns eligible so that poten- existed for certain cities. A multicountry quantita- tial cases are not missed. Crucially, health systems tive and qualitative online survey of medical and need to have the capacity to provide follow-up care, public health experts working on retinopathy of improve technology, and develop a skilled workforce prematurity in the region was carried out to estimate with trained ophthalmologists (43).

preterm newborns in 2010 developed retinopathy of the burden of disability for survivors of neonatal sepsis, prematurity during the neonatal period; 53 800 progressed which is a priority research gap (23). Since neonatal to potential vision-impairing disease, 20 000 of whom sepsis is a common exposure, even a low risk of impair- became blind or severely visually impaired (41). Retinopathy ment would have a large population attributable effect. of prematurity is directly related to the quality of inpatient care (see Box 2.4). There are increasing rates in MICs where neonatal care has been scaled up without attention to quality and monitoring systems, or specialist training (41, 42). The limited data suggest that lower retinopathy of prematurity rates in Africa may be due to higher mortality rates of preterm newborns in these settings.

Disability after neonatal encephalopathy: An estimated 1.2 million newborns suffer neonatal encephalopathy associated with birth injury, of which 96% are born in LMICs. Of the survivors, 233 000 per year are estimated to develop moderate to severe neurodevelopmental impairment (such as cerebral palsy) and 181 000 display mild impairment and suboptimal child development (30).

Disability after neonatal infections: Neurodevelopmental impairment occurs in 23% of survivors of neonatal meningitis.

However, there are no useable data regarding © Ayesha Vellani / Save the Children

45 46 SURVIVE AND THRIVE: Transforming care for every small and sick newborn tion attributed conditions (45). toneonatal ofDALYstotal comparedtoHICs, withalargerpropor many affected by crises,have humanitarian ahigher million DALYs, (44).LMICs, or8.2%oftheglobaltotal sepsis, and “other toberesponsiblefor neonatal”) 219 conditions (pretermbirth,intrapartum-related, neonatal WHO GlobalHealth Estimates2016 estimatedneonatal advanced age,freeofdiseaseanddisability. health situation wheretheentirepopulationlives toan of thegapbetweencurrent healthstatus andanideal these DALYs acrossthe populationisanapproximation be thoughtofasonelostyear ofhealthy life. The sumof life year (DALY) tomeasurethisburden.OneDALY can 2.8). (Fig. WHO andothersusethedisability-adjusted communicable diseasesfor smallandsick newborns newborn andlong-termriskofnon- deaths,disability The dueto worldhumancapital losessubstantial Acknowledge thelossofhumancapital response andhealthsystems Transform: humancapital,societal growth gainstoprevent theseconditions. eases, thereislittle focus onpromotingfetal healthand and innovation for treatingadultnoncommunicabledis- disease epidemic.However, comparedwithinvestment Southern Asia, arecontributingtothenoncommunicable rapidly gainweight. The highratesofSGA, especiallyin newborns, bothpretermandSGA, especiallyifthey strong predictorofnoncommunicablediseasesfor small (previously known astheBarker hypothesis); thisisa have experienced developmental programminginutero levels inmany countries.Smallandpretermnewborns withepidemic 2diabetesisincreasing, ortype resistance cardiovascular and insulin disease,obesity of stunting inchildhood. Prevalence of and SGA newborns have thehighestrisk ate-for-gestational-age peers(6,30).Preterm agescomparedwithappropri- gestational attention deficit disorder)atall hyperactivity delay andbehavioural disorders(such as suggest asmallincreasedriskofcognitive for impairmentoutcomesafter SGA but arescarce communicable disease.Data development andlong-termriskofnon- riskfactorsimportant for stunting, child early-life environmentalinfluencesare outcomes, even inadulthood.Fetal and Size atbirthiswell known topredicthealth Lifelong andintergenerational health - social andcognitive growth (54–56). also have effects detrimental onachild’s developmental, of work (46,52–53).Maternalpsychological distressmay childcare) withtheirreducedwages duetomisseddays tures outpatientcare,suppliesand (fromhospitalization, Parents may alsohave tobalanceout-of-pocket expendi- (51). parents includefuneralcostsandlostproductivity tion more likely toexperiencediscordandsocialisola- marital post-traumatic stressdisorders. These families arealso depression andanxiety, andathree-fold riskofacuteor carehaveneonatal asignificantlyhigherincidenceof preterm, sick ordisablednewborns whorequireinpatient (46). Comparedwiththegeneralpopulation,parentsof for theirsmallandsick newborns, oriftheirchild dies emotional burdenonparentsandfamilies whencaring duetothesocial,economicand andproductivity capital There isalsoamajorandunder-recognized lossofhuman social norms,including investing intheeducationofgirls. health-care access. Itisthuscrucial toaddresscultural and risk for sex-selective terminationofpregnancyorreduced male genderpreference, wheregirlsareatincreasedsocial transformation. This isespeciallytrue incultures witha As notedpreviously, alsodemandssocial genderinequity to bemissingforLBW very orextremely preterm infants. tional agecut-off. Birthanddeathrecordsaremorelikely factors, especiallyinthosebornclosetothelower- gesta health-care providersandsocialeconomic ofviability isaffectedmedical intervention by theperceptionsof Even inhigh-incomesettings, thelikelihood ofactive evidence, sincemany ofthesedeaths arepreventable. health-care providers. Such fatalismisnotbasedon preterm newborns –isconsideredinevitable,even by In somesocieties,newborn death–especially of broader healthdeterminants Address socialnorms and (47–50). The economicconsequencesfor bereaved

© UNICEF / UN0204073 / Zehbrauskas CHAPTER 2 . What the numbers say numbers the . What Use data to inform action Most of a person’s human capital and physiological Each of the approximately 140 million infants born per development happens early in life. Childhood is thus year needs basic, essential care, including effective a key period for human-capital building, and the obstetric and essential newborn care (warmth, breast- burden of disease in childhood could have effects milk feeding, hygiene and infection prevention and basic that persist throughout the life course (57). resuscitation). These are best provided by the parents and family with the support of skilled health-care providers. As noted earlier, an estimated 30 million small and sick must be understood (Fig. 2.8). Progress towards UHC newborns will have potentially life-threatening conditions will require comparability of increasingly complex data in and require special newborn care, for example with KMC order to track inequalities. There is a strategic objective or antibiotics. Roughly 8–10 million will need intensive within the Every Newborn Action Plan to transform the newborn care, notably with respiratory support. These use of data to track coverage and quality of care. The standards of care, infrastructure, technology, provider and Every Newborn Measurement Improvement Roadmap parental needs are detailed in Chapters 3 and 4. provides a multi-year, multi-partner pathway to define specific indicators, test validity, develop tools and To plan the appropriate health system response, and to promote data use (4). Chapter 5 presents opportunities guide health system improvement and reach targets, to rapidly improve data systems that track outcomes and the details of the problem and numbers requiring care enable better care.

Fig. 2.8 Health system responses for small and sick newborns by level of care, with their impact on human capital

LOSS OF HUMAN CAPITAL HEALTH SYSTEM CARE NEEDED

2.5 million neonatal 2.6 million stillbirths deaths after death 8-10 million Family support Millions of newborns with children with severe complications moderate or

severe long Intensive newborn car e term disability Millions of

20 million newborns Special newborn care

, family suppor t children with with complications requiring mild long term inpatient hospital care disability eg Care for children with

disability learning or behavior Other long term effects eg higher risk 110 million newborns of non Essential maternal and newborn care for all without major complications communicable diseases Including 10 million small Increased for gestational age newborns load in later life health and care Parent burden eg mental health, economic etc

Adapted from: Lawn, Davidge & Paul, et al. Born too soon: care for the preterm baby (8).

47 A PARENT’S STORY Once prohibited from touching her baby, this mother now advocates for family-centred care in Hungary

With the approval of her obstetri- always found reasons to try and send me to a psycholo- cian, a pregnant Hungarian-French gist,” she recalled. woman, Lívia Nagy Bonnard, Five months after his birth, Edouard was finally cleared travelled from her home in France to by his Hungarian doctors to make the journey back visit her family in Budapest. It was home to France. Edouard’s follow-up care in France was during this trip that she began to extensive, but his development was slow. “At the age have flu-like symptoms. A paediatric

Transforming care for every small and sick newborn of 2, I was worried he still wasn’t walking,” Livia said. nurse, Lívia knew that something was wrong. She went “I finally saw the paediatrician of my sister who gave to the hospital and was diagnosed with pre-eclampsia. us an MRI. Only then did they diagnose him with PVL.” Lívia was then transferred by ambulance to another Periventricular leukomalacia, or PVL, is a type of brain hospital with an NICU. Three hours later, her son Edouard injury that can result in cognitive and motor disabilities. was born via emergency caesarean section. At 27 weeks’ Now 12, Edouard has had extensive physical, occupa- gestation, he weighed only 890 g. tional, speech, and animal-assisted therapies. While

SURVIVE AND THRIVE: AND SURVIVE The NICU had restrictive visiting policies, only allowing developmentally delayed, he speaks two languages and 2 visits a day for 20 minutes at a time. is learning to read. “The worst part is that I could not touch him,” Lívia “We are not isolating from the world,” Lívia says remembered. “They would be telling me that I could about her family. “We go on vacations. We live our life give him an infection. You start to believe them … I felt together.” Four years ago, Lívia joined as a member of like I could not do anything for him.” the European Foundation One thing Lívia tried to do was provide breastmilk. “I for the Care of Newborn brought my milk to the hospital. I was so proud of what Infants (EFCNI) Parent I had pumped. I put it on the table. My son’s nurse said Advisor Board. She ‘What are you doing with this milk? You can’t give him also helped create a milk with your pre-eclampsia medication.’ And then the Hungarian parent orga- nurse poured the milk down the sink. Soon after my nization called Melletted milk dried up.” During Edouard’s 14 weeks in neonatal a helyem Egyesület – intensive care, he was never diagnosed with a disabil- (Right(s) beside you!). In ity. However, Lívia’s nursing experience and maternal these roles, Lívia works in instincts told her that something was amiss. partnership with clinicians to bring family-centred care initiatives to Hungarian neonatal care units. “It is my “I kept telling people that there was something therapy,” Lívia says about her advocacy work. wrong. I am the expert on my child. But the staff

48 CHAPTER 2

REFERENCES say numbers the . What

1. UNDESA. Sustainable Development Goals. 2015 monitoring report: current status and strategic (https://sustainabledevelopment.un.org/topics/sustain- priorities. Geneva: World Health Organization; 2018. abledevelopmentgoals, accessed 24 February 2019). 13. Lawn JE, Bhutta ZA, Wall SN, Peterson S, Daviaud 2. UNICEF, WHO. Every newborn: an action plan to E. Cadres, content and costs for community-based end preventable deaths. Geneva: World Health care for mothers and newborns from seven coun- Organization; 2014 (http://www.who.int/mater- tries: implications for universal health coverage. nal_child_adolescent/newborns/every-newborn/en/, Health Policy Plan. 2017;32(Suppl 1):i1–i5. accessed 24 February 2019). 14. Oza S, Cousens SN, Lawn JE. Estimation of daily 3. QED: Network for improving quality of care for risk of neonatal death, including the day of birth, maternal, newborn and child health website (http:// in 186 countries in 2013: a vital-registration and qualityofcarenetwork.org/about, accessed 24 modelling-based study. Lancet Glob Health. 2014;2: February 2019). e635–44. 4. Moxon SG, Ruysen H, Kerber KJ, Amouzou A, Fournier 15. Gupta G, et al. Use of real time monitoring system S, Grove J, et al. Count every newborn; a measure- in sick newborn care units in India. UNICEF, 2017 ment improvement roadmap for coverage data. BMC (https://docplayer.net/64991967-use-of-real-time- Pregnancy Childbirth. 2015;15 (Suppl 2):S8. monitoring-system-in-sick-newborn-care-units-in-in- 5. Bhutta ZA, Das JK, Bahl R, Lawn JE, Salam dia-subhead.html, accessed 24 February 2019). RA, Paula VK, et al. Can available interventions 16. WHO. WHO-MCEE estimates for child causes end preventable deaths in mothers, newborn of death, 2000-2016. Geneva: World Health babies, and stillbirths, and at what cost? Lancet. Organization; 2017. 2014;384(9940):347-70. 17. Blencowe H, Cousens S, Chou D, Oestergaard M, 6. Lawn JE, Blencowe H, Oza S, You D, Lee AC, Say L, Moller AB, et al. Born too soon: the global Waiswa P, et al. Every Newborn: progress, pri- epidemiology of 15 million preterm births. Reprod orities, and potential beyond survival. Lancet. Health. 2013;10 (Suppl 1):S2. 2014;384(9938): 189–205. 18. Blencowe H, Cousens S, Oestergaard MZ, Chou D, 7. UN IGME. Levels & trends in child mortality: report Moller AB, Narwal R, et al. National, regional, and 2018. Estimates developed by the United Nations worldwide estimates of preterm birth rates in the inter-agency group for child mortality estimation year 2010 with time trends since 1990 for selected (UN IGME). New York: United Nations Children’s countries: a systematic analysis and implications. Fund; 2018. Lancet. 2012;379(9832):2162–72. 8. Lawn JE, Davidge R, Paul VK, von Xylander S, de 19. Chawanpaiboon S, Vogel JP, Moller AB, Lumbiganon Graft Johnson J, Costello A, et al. Born too soon: P, Petzold M, Hogan D, et al. Global, regional, and care for the preterm baby. Reprod Health. 2013;10 national estimates of levels of preterm birth in 2014: (Suppl 1):S5–S5. a systematic review and modelling analysis. Lancet 9. Victora CG, Boerma T. Inequalities in child mortality: Glob Health. 2019;7(1):e37–e46 real data or modelled estimates? Lancet Global 20. Chang HH, Larson J, Blencowe H, Spong CY, Health. 2018;6(5):e477–e478. Howson CP, Cairns-Smith S, et al. Preventing 10. Afnan-Holmes H, Magoma M, John T, et al. preterm births: analysis of trends and potential Tanzania’s Countdown to 2015: an analysis of two reductions with interventions in 39 countries with decades of progress and gaps for reproductive, very high human development index. Lancet. maternal, newborn, and child health, to inform 2013;381(9862):223–34. priorities for post-2015. Lancet Glob Health. 21. Desai M, ter Kuile FO, Nosten F, McGready R, 2015;3(7):e396–e409. Asamoa K, Brabin B, et al. Epidemiology and burden 11. KC, Ashish, Jha AK, Shrestha MP, et al. Time trends of malaria in pregnancy. Lancet Infect Dis.7(2):93–104. and risk factors associated with neonatal death; projec- 22. Sandall J, Soltani H, Gates S, Shennan A, Devane D. tion of neonatal mortality rate for 2030 in Nepal. (Under Midwife-led continuity models versus other models review) Maternal and Child Health J, 2019. of care for childbearing women. Cochrane Database 12. Survive, Thrive, Transform Global Strategy for of Systematic Reviews. 2016;Issue 4. Art. no.: Women Children’s and Adolescents Health. 2018 cd004667. doi: 10.1002/14651858.cd004667.pub5.

49 50 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 33. 32. 31. 30. 29. 28. 27. 26. 25. 24. 23.

Blencowe H, CousensS, ModellB, Lawn J. Folic analysis. Lancet.381:S62. come andmiddle-incomecountries: amodelled anomaliesamenabletosurgeries inlow-ingenital - Higashi H,Barendregt JJ, Vos T. The burdenofcon- Pregnancy Childbirth. 2015;15 Suppl2:S7. system bottlenecks andpotentialsolutions.BMC sick analysis newborns: ofhealth amulti-country G,Deorari Gupta A, etal.Inpatientcareofsmalland Moxon SG,Lawn JE,Dickson KE,Simen-Kapeu A, 1990. Pediatr Res. 2013;74 (Suppl1):50–72. regional andgloballevels for 2010 withtrendsfrom encephalopathy tal incidenceandimpairmentat GL,etal.Intrapartum-relatedDarmstadt neona- Lee AC, Kozuki N,Blencowe H, Vos T, Bahalim A, 1):S5–18, s19. be done?IntJGynaecolObstet.2009;107 (Suppl deaths:where,why,and neonatal andwhatcan VK, etal. Two millionintrapartum-related stillbirths Lawn JE,Lee AC, Kinney M,Sibley L,Carlo WA, Paul Goals. Lancet.2016;388: 3027–35. with implicationsforDevelopment theSustainable in2000–15: anupdatedsystematic analysismortality al. Global,regional,andnationalcausesofunder-5 Liu L,OzaS, HoganD, Chu Y, Perin J, Lawn JE,et accessed 24February 2019). 2018. doi:https://doi.org/10.17037/pubs.04646824, London School ofHygiene & Tropical Medicine.; ciated maternalcolonisation.PhDthesiscompleted, study intheGambiaexamining aetiologyandasso- Okomo U. infections; Neonatal ahospital-based 2017;65(Suppl 2):S200–S219. nant women, stillbirths,andchildren. ClinInfect Dis. Group BStreptococcaldiseaseworldwide for preg- M, Tann CJ, HallJ, etal.Estimatesoftheburden of Seale AC, Bianchi-Jassir F, Russell NJ, Kohli-Lynch Clin Infect Dis.2017;65(Suppl 2):S89–S99. dren: why, what,andhow toundertakeestimates? worldwide for pregnantwomen, stillbirths,andchil- Tann CJ, HallJ, etal.GroupBstreptococcaldisease Lawn JE,Bianchi-Jassir F, Russell NJ, Kohli-Lynch M, 2018;392(10142):145–59. (ANISA): cohortstudy. anobservational Lancet. infections amongyoung children insouth Asia and incidenceofcommunity-acquiredserious LC, ShahidulIslamM,ShangN,etal.Causes Saha SK,Schrag SJ, El Arifeen S, Mullany 2013;74 (Suppl1):73–85. Africa, andLatin America for 2010. Pediatr Res. impairment estimatesinSouth Asia, sub-Saharan severeEngmann C,etal.Neonatal bacterialinfection Seale AC, Blencowe H,Zaidi A, GanatraH,Syed S, 44. 43. 42. 41. 40. 39. 38. 37. 36. 35. 34.

February 2019). disease/estimates/en/index1.html, accessed 24 (https://www.who.int/healthinfo/global_burden_ 2016. Geneva, World HealthOrganization;2018. andbycause, age,sex, region,2000- by country Global HealthEstimates2016: Diseaseburdenby Rev Panam SaludPublica 2016;39(36):322–9. of prematurity inLatin America andtheCaribbean. try, study cross-sectionalobservational ofretinopathy Arnesen L,DuránP, Silva J, Brumana L. A multi-coun- series analysis. Neonatology. 2014;106(3):201–8. Brazil: abefore-and-after study withinterrupted time S, nursesin GianiniN,etal.Educatingneonatal Gilbert C,Darlow B, Zin A, Sivasubramaniam S, Shah levels for 2010. Pediatr Res. 2013;74(Suppl 1):35–49. of retinopathy ofprematurity atregionalandglobal Preterm-associated visualimpairmentandestimates Blencowe H,Lawn JE, Vazquez T, Fielder A, GilbertC. 1):17–34. global levels for 2010. Pediatr Res. 2013;74 (Suppl velopmental impairmentestimatesatregionaland R, ZhongN,etal.Preterm birth-associatedneurode- Blencowe H,Lee AC, CousensS, Bahalim A, Narwal 24 February 2019). (http://discovery.ucl.ac.uk/1532179/, accessed disorders(MGDb).UCLDiscovery;2016congenital of geneticsandtheModellglobaldatabase munity Petrou M,Lawn J. Epidemiologicalmethodsincom- Modell B, DarlisonM,MoorthieS, Blencowe H, Pediatr Res. 2013;74(Suppl 1):1–3. into determinesyour riskofdisability-freesurvival. Beyond newborntheworld survival: you areborn Lawn JE,Blencowe GL,Bhutta H,Darmstadt ZA. Health (inpress)March 2019. asystematic analysis. LancetGlob from 2000: estimates oflow birthweight in2015, withtrends Stevens GA, etal.National,regional,andworldwide Blencowe H,Krasever J, deOnisM,Black RE, An X, Lancet. 2013;382(9890):417–25. analysis. middle-income countries:apooledcountry small-for-gestational-age infants inlow-income and Blencowe riskinpretermand H,etal.Mortality Katz J, Lee AC, Kozuki N,Lawn JE,CousensS, levels. Pediatr Res. 2013;74:86. impairment estimatesfor 2010 atregionalandglobal and Rhesusdiseaseofthenewborn: incidenceand M, EbbesenF, hyperbilirubinemia etal.Neonatal Bhutani VK, Zipursky A, Blencowe H,KhannaR,Sgro Siddeeg K,etal.(Underreview) IntJEpidemiol,2019. Yunis KA, Al Bizri A, Al Raiby J, NakadP, ElRafei R, disorders. IntJEpidemiol.2010;39(Suppl 1):i110–i121. fromneuraltube mortality acid toreduceneonatal

CHAPTER 2 . What the numbers say numbers the . What 45. World Bank. Harmonized list of fragile 51. Fox M, Cacciatore J, Lacasse JR. Child death in the situations FY 18 (http://pubdocs.worldbank.org/ United States: productivity and the economic burden en/189701503418416651/fy18fcslist-final-july-2017. of parental grief. Death Stud. 2014;38(9):597–602. pdf, accessed 24 February 2019). 52. Hodek J-M, Graf von der Schulenburg JM, Mittendorf 46. Lakshmanan A, Agni M, Lieu T, Fleegler E, Kipke M, T. Measuring economic consequences of preterm Friedlich PS, et al. The impact of preterm birth <37 birth – methodological recommendations for the weeks on parents and families: a cross-sectional evaluation of personal burden on children and their study in the 2 years after discharge from the neona- caregivers. Health Econ Rev. 2011;1:6. tal intensive care unit. Health Qual Life Outcomes. 53. Dutta S, Mahajan R, Agrawal SK, Nehra R, Narang 2017;15(1):38. A. Stress in fathers of premature newborns admit- 47. Pace CC, Spittle AJ, Molesworth CL, Lee KJ, ted in a neonatal intensive care unit. Indian Pediatr. Northam EA, Cheong JL, et al. Evolution of depres- 2016;53(4):311–13. sion and anxiety symptoms in parents of very 54. Spencer N, Wallace A, Sundrum R, Bacchus C, preterm infants during the newborn period. JAMA Logan S. Child abuse registration, fetal growth, and Pediatr. 2016;170(9):863–70. preterm birth: a population based study. J Epidemiol 48. Vigod SN, Villegas L, Dennis CL, Ross LE. Prevalence Community Health. 2006;60(4):337–40. and risk factors for postpartum depression among 55. Strathearn L, Gray PH, Callaghan F, Michael J, Wood women with preterm and low-birth-weight infants: a DO. Childhood neglect and cognitive development systematic review. BJOG. 2010;117(5):540–50. in extremely low birth weight infants: a prospective 49. Henderson J, Carson C, Redshaw M. Impact of study. Pediatrics. 2001;108(1):142. preterm birth on maternal well-being and women’s 56. Spittle A, Treyvaud K. The role of early developmen- perceptions of their baby: a population-based survey. tal intervention to influence neurobehavioral out- BMJ Open. 2016;6(10):e012676. comes of children born preterm. Semin Perinatol. 50. Roque ATF, Lasiuk GC, Radunz V, Hegadoren K. 2016;40(8):542–8. Scoping review of the mental health of parents of 57. Bleakley H. Health, human capital, and development. infants in the NICU. J Obstet Gynecol Neonatal Annu Rev of Econom. 2010;2(1): 283–310. Nurs. 2017;46(4):576–87.

51 52 CHAPTER 3 © UNICEF / UNI195708 / Mawa Deliver the care they are entitled to

53 54 SURVIVE AND THRIVE: Transforming care for every small and sick newborn • • • KEY MESSAGES and subject to catastrophic costs. and subject tocatastrophic planning within UHC,asnewborns andtheirfamilies may for beinhospital weeks attention andinvestment. Newborn caremustbeincludedinfinancial protection marginalized populations. Infantscrises requirespecial bornamidhumanitarian expanding theworkforce carecompetencies,andreaching withneonatal carerequiresstrengtheningexistingtheir families.Equitable healthservices, Reducing barriers anddiscriminationis crucial toreaching allnewbornsand partnership withparentsandfamilies. small andsick newborns, particularlytrainedand motivated nurses,working in investment insufficient numbersofhealth-care providers withskillstocare for system levels connectedby functionalreferral carerequires systems. High-quality by populationsize andneed,withanetworkoffacilitieshealth andvarying teams, andinnovation. Carefor smallandsick newborns needstobeorganized Quality carerequiresanintegrated,resilienthealthsystem,multidisciplinary better nutritionandwell-being; andlower levels ofreadmissiontohospital. parents andfamilies canhave greatbenefits which include:reducedmortality; mother together, avoiding separationfromthewiderfamily, andempowering andsustainability.processes toensurequality Moreover, keeping newborn and doctors, safe technologies, medicinesanddiagnostics,evidence-based care requiresadefinedspace,adequatelystaffed withcompetentnursesand especially whensmallandsick. Preventing throughinpatient deathsanddisability deaths anddisability. Newborns arevulnerableandcandiewithinminutes, Cost-effective, evidence-basedsolutionsareavailabletopreventnewborn CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver © Amy Fowler / USAID

Coverage with quality, dignified care

UHC expands access to high-quality, integrated, peo- are safe, efficient, timely and people-centred(2) ; and ple-centred health services to reach everyone, with no ensure optimal clinical, developmental and social out- one incurring financial hardship(1) . To achieve the desired comes for small and sick newborns. neonatal outcomes, UHC packages should include locally-defined, high-impact, cost-effective interventions In February 2017, WHO, UNICEF, and their partners for the care of small and sick newborns, and multisec- launched the Quality of Care Network to strengthen toral approaches where appropriate. At the same time, quality and support implementation of maternal and health systems should be strengthened to ensure that newborn care in 10 countries. The aim of the network is increased coverage of neonatal interventions is accom- to reduce maternal and newborn deaths and still- panied by improved quality of newborn services, as poor births in these countries’ health facilities by 50% quality of care contributes to morbidity, disability and within five years. The network provides a unique oppor- mortality and undermines public confidence (Annex 3 tunity to document and share lessons on implementing provides details of key neonatal interventions). quality care for small and sick newborns through specific standards and harmonized country support (3). Quality of care for newborns is defined by WHO as the degree to which newborn health services increase the The importance of evidence-based practice likelihood of timely, appropriate care for the purpose Consistently safe and effective care for small and sick of achieving desired outcomes that are both consis- newborns becomes possible when evidence-based tent with current professional knowledge and take into practice is used in routine and emergency care. With evi- account the preferences and aspirations of women and dence based on research, universal standards and guide- families (2). The key components of quality of care for lines can be developed to support health-care facilities mothers and newborns in health facilities are summa- and providers in all settings. Providers are better equipped rized by the quality of care framework (Fig. 3.1). The to deliver high-quality care for small and sick newborns framework sets out the values of quality, equity and when they incorporate scientific knowledge into prac- dignity. It identifies two important components of care: tices. This approach requires stakeholder engagement the quality of provision of care; and the quality of care and commitment. as experienced by women, newborns and families (2). Good-quality care services use evidence-based practices; The international standards and guidance published are well-organized, accessible and adequately resourced; by WHO for newborn care are a good starting point

55 56 SURVIVE AND THRIVE: Transforming care for every small and sick newborn facilities canhelptocultivate aculture ofevidence-based For success,leadershipwithinhealth-care sustainable anticipated in2019. fortailored thecareofsmallandsick newborns are burdens andavailable resources.Global WHO standards their ownthatreflect nationalstandards specificdisease (2, 5,6).Countriescanusetheseresourcestodevelop Fig. 3.1 WHO quality ofcareframework

evidence from systematic research.” (4) expertise withthebestavailable external clinical ual patient. Itmeansintegrating individualclinical in makingdecisionsaboutthe care oftheindivid- explicit andjudicioususeof current bestevidence Evidence-based practice is “the conscientious, Outcome Process Structure Adapted from:WHO.Standardsforimprovingqualityofmaternalandnewborncareinhealthfacilities,2016(1,2). 3. Functionalr 2. Actionableinformationsystems 1. Evidence-b car PROVISION OFCARE e andmanagement Coverage ased practicesforr eferral systems Individual andfacility-leveloutcomes of 7. Competent,motiv 8. Essentialphysicalr k ey practices of complication outin Quality of Health system Health outc e s

ated human esour Excessive handlingcan disturb anewborn’s sleep, supportivementally caretosmallandsick newborns. Close attention shouldbepaidtodelivering develop - care andneuroprotection Developmentally supportive with bestclinicalpractices. health-care educationtoensurethatstaff areuptodate adequately stressedthatthereisaneedfor continued that new evidence continuallyemerges, itcannotbe care notyet implementedatscale(seeBox 3.1).Given braindevelopment of impact onsurvival, andquality an evidence-basedwithdemonstratedhigh intervention health system. Kangaroomothercare,for example, is interpreting guidelines,areneededatalllevels ofthe and protocols,alongwithtrainingonintegrating practice amongproviders. Readily available guidelines 6. Emotionalsupport 5. R 4. Effectivecommunication car omes espect andpr ces av e People- E XPERIENCE OFCARE re ailable sour centr eser ces ed out

v ation of comes dignity CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver

Box 3.1 Benefits of intermittent and continuous kangaroo mother care

Kangaroo mother care (KMC) is an evidence-based weight gain, and physiological stability for infants approach, recommended by WHO, for the care of LBW (9, 11). KMC also supports parent–infant bonding and (especially preterm) newborns (7, 8). KMC involves child development in all settings, including improved early, continuous and prolonged skin-to-skin contact longer-term neurobehavioural and psychomotor between the newborn and parents or another development and brain maturation (12–15). caregiver in the “kangaroo position”, with exclusive In many countries, skin-to-skin contact and KMC breastfeeding where possible. KMC should be accom- are now considered the gold standard for preterm panied by supportive care, early discharge, and appro- newborns and are regularly integrated into family- priate follow-up (see Chapter 4 for more details) . (8) centred care approaches to inpatient care (11, 16). KMC has been shown to reduce mortality by up As a central family-centred care component, KMC to 50% in LBW newborns weighing <2000 g when empowers families to care for their small newborns compared with conventional care; evidence for this and shortens their length of stay in hospital. Studies is particularly strong in LMICs (9, 10). KMC was also show that KMC can reduce the workload for originally intended for more poorly-resourced and health-care providers, especially nurses (17). Both high-mortality settings. However, an increasing body intermittent and continuous KMC are beneficial and of evidence shows multiple benefits for newborns can be provided alongside other interventions and and their families in all settings, including HICs. care, such as CPAP, as appropriate for the newborn’s Benefits include improved duration of breastfeeding, clinical condition.

well-being, and growth. Health-care providers can and proper monitoring in place throughout treatment minimize disturbance by grouping interventions, which (23) (see Box 3.2). involves “clustering care” into one caregiving period. This practice should be guided by what the newborn will tol- The term “dignified care” for inpatient newborns implies erate. Contact with parents, especially mothers, should respectful care for both the newborn and the parents be maximized to encourage bonding and to support and caregivers. Health-care providers must treat all lactation and feeding with breastmilk (18). Care that newborns with respect and sensitivity and ensure their includes correct positioning of the newborn also protects dignity; give them the high-quality care they are entitled skin, safeguards sleep, and minimizes stress and pain to without discrimination; provide age- and culturally-ap- (19–22) (See Chapter 4 for more details on developmen- propriate nutrition; and protect them from any form of tally supportive care for children). violence while in care, including physical abuse, neglect or detainment (6). Evidence shows that pain affects brain development, with potentially long-term effects. Health-care provid- Parents and caregivers too should be treated with ers should ensure that newborns do not experience respect and dignity, kindness, compassion, courtesy unnecessary discomfort or pain, both to optimize brain and honesty. The health-care providers should respect development and because pain management is also the rights of parents and caregivers, including access a crucial component of dignified and humane care. to information, privacy and confidentiality, support for Therefore, health-care providers need to be able to breastfeeding and protection from unnecessary separa- recognize pain cues, particularly in small newborns, tion from their infants (6). and know how to prevent and minimize pain (23). Appropriate tools are recommended to assess pain and The concept of respectful maternity care is well defined make decisions on pain and comfort management (24, and covers both the mother and the newborn at the 25). Increasingly, evidence supports improved comfort time of birth. Some elements of respectful care for management when newborns are breastfed or placed newborns are reflected in the global standards for skin-to-skin with a family member during painful proce- improving quality of maternal and newborn care and the dures (21, 24, 25). For sicker newborns, analgesics may standards for improving the quality of care for children be necessary, although only with full risk awareness and young adolescents in health facilities. However,

57 58 SURVIVE AND THRIVE: Transforming care for every small and sick newborn be given theopportunity toseeandholdtheir newborn his orherfamily inaprivate, quietspace;parentsshould pain-free death. A newborn shouldbeallowed todiewith conditionsareentitledto adignifieduntreatable and As withend-of-life carefor allpatients,newborns with is deteriorating. parents assoonpossibleifanewborn’s condition toinform abnormalities.Itisimportant the congenital encephalopathyand casesofneonatal orsevere occur inpreterminfants, newborns with infections, support whenanewborndeaths dies.Mostneonatal Mothers, fathers andfamilies needinformation and What to do whenanewborn dies for smallandsick newborns. researchimplementation for improving ofcare quality ing agenda(29,30)andhave calledfor investments in efforts inUHC(28)andthehealth-system strengthen- and reportshave highlightedtheneedtoembedsuch ence-sharing andlearninginthisarea.Recent studies newborn careandstrengtheningglobalexperi- from carearoundtimeofbirthtocovering inpatient of CareNetworkiswell-positioned toexpand itsfocus infants admitted aspatients(27). The ongoingQuality further articulationofrespectfulcareisrequiredfor (26). of apositionpaperfirstpublishedin2006 Source: Thiswas 2016 statement publishedonlineon25January andintheFebruary 2016 issueofPediatrics asanupdate placement, circumcision orcentral venous access). access); andinmore invasive procedures (chest tube (suctioning, phlebotomy orperipheral intravenous examination); inmoderately invasive procedures tube placement, bladdercatheterization orphysical may occurduring routine patientcare (nasogastric Varying degrees ofneonataldiscomfort orpain of painfulevents.” most immature infants receiving thehighestnumber frequently subjected to painfulprocedures, withthe on Fetus andNewborn states that: “Neonates are in thepolicystatement, the Academy’s Committee the sectiononanaesthesiology and painmedicine assessing andtreating paininthesepatients. In procedures performed onnewborns, whileroutinely health-care facilities minimize thenumberofpainful a policystatement in2016 recommending that The American Academy ofPediatrics released Box 3.2Guidelinesfor painmanagement of death. informationretaining onthecausesandcircumstances improvement deathauditsandquality neonatal by tate death certificatecompleted. Health facilities can facili- deathsare recordedanda It isessentialthatneonatal may betherapeutic for thegrieving mother(34) . bereavement respectsthegreatvalue ofbreastmilkand small andsick newborns. Donationofbreastmilkduring precious resourcethatcanbeusedtosupportother be offered theoptionofdonatingtheirbreastmilkasa to reduceany discomfort. Alternatively, mothersmay breastmilk. Simplepainreliefcanbeprovided if needed (bandages/tight clothing)anddiscouragingexpression of may includeadviceonapplyingpressuretothe breasts stop breastmilkproductionafter her newborn hasdied meaningful (32).Supportfor themotheronhow to a cutting boxes canbeextremely ofhairinmemory footprints, photosandgivingfamilies baby clothingor should beculturally appropriate.Insomesettings, taking but memoriesareimportant to createorhelppreserve logical andsocialeffects for parentsandstaff (33).Steps newborn dies,reducesthenegative emotional,psycho- care, includingpsychological andspiritual supportafter a (31, 32).Good-quality, compassionatebereavement before andattheendoflife asculturally appropriate medications to manage painduring surgery. manage painduring minorprocedures, andeffective monitoring, useofdrug andnondrug therapies to address prudent useofprocedures, routine pain evidence-based written guidelines. These should mends thateach institution shoulddevelop itsown ment, the American Academy ofPediatrics recom - persist into childhood. Initsupdated policystate - both brain development andstress responses that to painearly inlife canleadto abnormalities in Data ofnewborns suggest thatrepeated exposure in newborn patients(26). inconsistently assessedand inadequately managed tis orepidermolysis bullosa. Pain continuesto be pain from diseasessuch asnecrotizing enterocoli- procedures, establishedpainfollowing surgery, and Acute painisalsoexperienced from skin-breaking CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver Organizing services by level of care protocols. Policies are needed to engage parents and other family members in the newborn’s care, with emphasis on For a small and sick newborn to survive, and thrive in minimizing the separation of parents and their newborns. later life, the family must be able to access the appropriate level of care within the health system. In a well-func- Essential care tioning system, care for small and sick newborns is At the primary care level, a facility provides essential care provided across different levels of a network of facilities at birth and in the early postnatal period. This is required organized by population size and need. for all newborns, and includes outpatient services. Up to 1 in 10 newborns will require resuscitation at birth and The simplest organization has three levels, mirroring primary, 5–15% will be preterm or LBW, as discussed in Chapter secondary and tertiary care at the population level: 1) 2. Even the most basic facility where birth takes place essential newborn care is provided at primary care level and should be prepared to give bag and mask resuscitation in all facilities where births take place; 2) special newborn to newborns who require it. These facilities should have care is provided at secondary level; and 3) intensive care trained staff; equipment and supplies to provide essen- is provided at tertiary level (Fig. 3.2). Ideally these levels are tial newborn care; postnatal care for the mother and interconnected by communication and referral systems. the newborn during the first 24 hours after birth; and a Frequently, there are additional levels or sublevels based on referral system linking the facility to secondary and ter- population size, health system context, and capacity. tiary levels of care for infants with complications requiring inpatient care. The primary care facility should also The level of inpatient care that a newborn receives is deter- provide outpatient services such as routine postnatal care mined by their individual clinical needs (Fig. 3.2). As noted to detect, stabilize and refer infants with high-risk condi- in Chapter 1, all levels of care, regardless of the setting and tions, manage minor problems, and ensure follow-up of health system capacity, require space, care and referral the newborn after discharge.

Fig 3.2 Inpatient care for small and sick newborns: requirements for care at different health system levels

Type of care Standards of care & Level provided Health system requirements evidence-based interventions Essential Place • Space for childbirth, with specific areas • Immediate newborn care (thorough newborn for resuscitation, stabilization and care, drying, skin-to-skin contact of the care and for postnatal care for mother and baby newborn with the mother, delayed to stay together cord clamping, hygienic cord care)

PRIMARY • Infrastructure for handwashing • Neonatal resuscitation (for those • Outpatient facility for routine postnatal care and who need it) management of newborn problems • Early initiation and support for exclusive breastfeeding • Skilled attendance 24/7 (e.g. midwifery and People • Routine care (Vitamin K, eye care nursing staff +/- doctors) and vaccinations, weighing and • Support staff for cleaning clinical examinations) Health • Linen/towels for drying and wrapping • Prevention of mother to child transmission of HIV technologies • Bag and mask resuscitation • Assessment, management and • Radiant heater, warmth source referral of: • Thermometer o bacterial infections including • Equipment for clean cord care treatment of Possible Severe • Vitamin K, eye ointment Bacterial Infection (PSBI) where • Weighing digital scale, tape referral not possible* • Immunization commodities o jaundice and diarrhoea • Antibiotics o feeding problems • Oxygen o birth defects and other problems • Pulse oximeter • Pre-discharge advice on mother and baby care and follow up Support • Water, sanitation and hygiene (WASH) and system infection prevention and control • Communication and functional referral system • Newborn patient record and facility register • Written policy on zero separation • Easy access to fathers/caregivers

59 60 SURVIVE AND THRIVE: Transforming care for every small and sick newborn special care should introduce these interventions beforespecial careshould introducetheseinterventions upgrading tointensive care. ** listed under specialcaremarkatransitionto intensiveprovidingThe care.Hospitals interventions * Outpatientcare. requirements for careatdifferent healthsystemlevels Fig 3.2Inpatientcarefor smallandsick newborns: Level TERTIARY SECONDARY care newborn Intensive care newborn Special provided Type ofcare Place Place Health system requirements system Support technologies Health People system Support technologies Health People • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • and commodities In additiontospecialcareequipment Transport andsafereferral ifneeded Warmers andcots speech therapy, occupationaltherapy, audiology, etc.) Allied healthprofessional(physiotherapy, nutrition, Accommodation for mothers Accommodation formothers areas forresuscitation,stabilizationandcare A dedicatedwarm spaceofafacility, withspecific Advanced medicines cardiology, neurology, ophthalmology neonatal care(anaesthetics,surgery, radiology, withcompetenciesin Other specialistdoctors Neonatologist oncall care 24/7 withspecialized Doctors competenciesinneonatal care 24/7 withspecialized Nurses competenciesinneonatal their baby Space formothertoroominandstayclose 24/7 uninterrupted electricity carewardDesignated intensive Clinical charts andfacilityregister Facilities forbathing,laundry andcooking/food and caregivers 24/7 accesstothefacilityformothers airwayContinuous positive pressure Effective phototherapyequipment(e.g.LED) Mobile X-raysystem phenobarbital) Medicines (e.g.antibiotics,caffeine, IVfluids, and micro-methods Basic diagnostics(e.g.glucometer, urinedipsticks) cups/spoons) Feeding equipment(nasogastric tubesand cannulae) Syringe pumpandaccessories(e.g.neonatal and blenders) oxygen accessories(e.g.oxygen concentrator Oxygen supply, pulseoximeter andnewborn Support staff auxiliaryandcleaningstaff) (nursing Doctor withneonatalskillsoncall Specialized andmidwiferystaff nursing 24/7 Infrastructure forstorageofhumanmilk Electricity supply(e.g.generatorback-up) Dedicated areaforKMC Hospital informationmanagement system diagnostics includingmedicalimaging 24/7 advancedlaboratorysupport andother Specialist equipmentandaccessories (e.g. totalparenteralnutrition) Supplies foradvancednutritionsupport Surfactant therapy Monitoring equipment high flow oxygen vianasalcannula Intermittent ventilation, positive-pressure

(continued)

evidence-based interventions Standards ofcare & • • • • • • • • • • • Transition care tointensive • • • • • • • • • • • • • • Thermal care (e.g. parenteralnutrition) Advanced feedingsupport (cup feedingandnasogastric feeding) Assisted feedingforoptimalnutrition Genetic services Paediatric surgery of birth defects Investigation andmanagement Surfactant treatment retinopathy ofprematurity Screening andtreatmentfor including intubation Mechanical/assisted ventilation, infants (includingpreterm) Specialized followupofhigh risk necrotizing enterocolitis(NEC)** Detection andmanagementof Exchange transfusion** airwayContinuous positive pressure** of birth defects Detection andreferral management fluids Safe administrationofintravenous Seizure management neonatal encephalopathy Detection andmanagementof anaemia, includingbloodtransfusion Detection andmanagementof Detection andmanagementofjaundice of hypoglycaemia Detection andmanagement neonatal infection Detection andmanagementof Prevention ofapnoea Safe administrationofoxygen follow up* Kangaroo mothercare,including Comfort andpainmanagement CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver Special care referral efforts. Hospitals that cover larger geographic Most small and sick newborns can be managed in a areas may need to consider a wider range of services dedicated neonatal unit at the secondary level, or in a than facilities with a smaller catchment area. district hospital or facility. Fig. 3.2 provides a guide to interventions and services options, and to the accom Some public-health professionals may believe that panying health system requirements needed to estab- inpatient care for small and sick newborns is prohibitively lish neonatal units for special care at secondary level. expensive and that it requires access to intensive care These services are offered in addition to essential units. In fact, intensive care is frequently not necessary, newborn care services. Both primary and secondary since as few as 1 in 20 newborns requires full intensive care levels should be able to identify conditions that care for a limited time. Moreover, research indicates that require higher-level care. up to 70% of all preterm deaths would be averted with special care alone. Countries with well-functioning essen- Intensive care tial and special newborn care capacity might reasonably Neonatal intensive care is required for very small, very be expected to set up intensive care units. However, it preterm, and very sick newborns, whose conditions may may be inappropriate where resources are scarce and ser- not be fully manageable at lower levels of care. In addi- vices not yet available at the lower care levels. In general, tion to the interventions provided at the special newborn health-care systems should prioritize high-quality essential care level, intensive care includes mechanical ventilation, and special newborn care, with regionalized access to advanced feeding support, paediatric surgical capacity neonatal intensive care for the few who may require it – all and more invasive monitoring and diagnostic capacity. supported by a strong referral system.

Capabilities at levels of care Care coordination As the level of care rises from essential to intensive, and To ensure that all small and sick newborns have access to cases become more complex, there is a greater need the appropriate level of care, multisectoral planning and for specialized staff, infrastructure, equipment, support investment is required to create a coordinated regional systems (such as more advanced diagnostics and labora- (or national) referral system across and within public and tory support) and outpatient follow-up services. private sectors. WHO has developed specific standards and indicators for referral of newborns (2, 6). In well-func- There is often a significant difference in system capacity tioning systems, services for newborns are organized between different levels of care. However, each can in a regional or national network to serve dedicated improve upon its capabilities by adding interventions and services as appropriate. For example, while facilities may be able to provide high-quality special newborn care, they may be a long way from having systems in place to provide intensive care.

Once facilities have the capacity, staff, training and skills to provide all aspects of high-quality care within a level, they may begin to take active steps to transition to the next level of care through incremental additions. For example, continuous positive airway pressure is an important transitional intervention that can be added at the special newborn care level. Similarly, facilities that provide essential newborn care can begin to develop special newborn care capacity by adding KMC and assisted

feeding as part of their stabilization and © Amy Fowler / USAID

61 62 SURVIVE AND THRIVE: Transforming care for every small and sick newborn their localfacility assoonappropriate. also addressreturning newborn every andtheirfamily to when alower level would be adequate.Policies should guide caseswhenahigherlevel ofcareisneeded,or policies. A written referral plan shouldbeinplaceto their level admissionanddischarge of care,withdetailed Each facility requiresaclearwritten policy describing to avoid separatingmotherandnewborn atany stage. relies onthereferral system andsafe transport,withcare unexpectedly. Inthesesituations, thenewborn’s survival numberofnewborns certain willstillrequireinpatientcare andobstetriccare,a antenatal in caseswithhigh-quality Not allcomplicationscanbepredictedbefore birth. Even Referral systems their newborns. This ensurestimelyaccesstotheappropriatecarefor equipped tomanagecomplicationsoremergencies. CEmONC andintensivecare)thatarebetter neonatal the motherreferred tohigher-level facilities (such as pregnancies ofmultiples,areidentified and antenatally high-risk casessuch asextreme prematurity, or twins, where they were born(socalledinbornpatients).Ideally, access inpatientcare,itisusuallywithinthefacility point. starting is thevital When smallandsick newborns individual needs. The facilitywhereamothergives birth Each newborn’s health-carejourney dependsontheir Early risk identification be abletoprovide intensive care. accessibility, whileasubgroup of CEmONCfacilities may KMC bedsbasedonvolume ofbirthsandgeographic menting CEmONCcanthenaimtohave specialcareand those whorequirehigher-level care. All facilities imple- birth forandreferring thosewhoneeditandstabilizing newborn care,providingat bagandmaskresuscitation below BEmONClevel essential canfocus onhigh-quality of afunctionalnetwork.For example, facilities atand provide agoodbasisfor regionalornationalplanning gency obstetricandnewborn care(CEmONC)models newborn care(BEmONC)andcomprehensive emer newborns, theexisting basicemergencyobstetricand In countrieslacking areferral system for smallandsick also helpavoid facilityovercrowding. ate level andasclosepossibletotheirhome. They can ensure thatnewborns receive careatthemostappropri- with specificclinicalneeds.Clearadmissionspoliciescan a higher-level bedorspaceisdedicatedonlytothose lower-level facility optimize theuseofresources,sothat policiesforpopulations. Detailed referral toahigher- or - care for smallandsick newborns requireshealthfacilities Providing anevidence-based package inpatient ofquality What isneededto provide care? alongside thenewborn. priate, withafamily memberandhealth-careprovider transport incubatorscanbe used, whereclinicallyappro- warmthsigns. to maintain andvital Alternatively, simple newbornswilling, may betransferred inKMCposition outcomes. For example, wheremothersareableand simple referral planscanimprove chances survival and In theabsenceofadvanced transportvehicles, even phone orradiotoalertitofreferral andarrival time. The referring thereferral facilityshould contact centreby sentwiththepatient. and theappropriatedocumentation ofcare,thereferraltinuity rationaleshouldbeexplained whenever possible. To ensurecommunicationandcon- be kept warm, andbeaccompaniedby afamily member as possiblepriortotransfer. The newborn mustalways Small andsick newborns requireasmuch stabilization workers experienced insmallandsick newborn care. to besafe andtimelyaccompaniedby trainedhealth facilities. Transfer carries inherent risks,sotransportneeds port for transfer ofsick orsmallnewborns tohigher-level Functional referral systems dependuponaffordable trans- Transportation

© Amy Fowler / USAID CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver that are prepared – often referred to as service readi- Medicines ness. In addition to ample qualified staff with an appro- The WHO model list of essential medicines for children priate skills mix, service readiness requires a facility and the WHO model formulary for children were devel- to have specific infrastructure, equipment, medicines, oped to ensure that medicines for treating common supplies, and diagnostics in place. These are described childhood diseases are given at the right dose and for in WHO standards on essential physical resources to the correct duration for children of all ages, including provide quality maternal and newborn health care (2). newborns (37). Many countries have a national essen- Monitoring systems (detailed in Chapter 5 and Annex tial medicine list, but often this does not include the 2) should be in place to identify and address service commodities required for inpatient care of small and gaps and to ensure health system accountability. Laws, sick newborns, such as oxygen or intravenous fluids policies and regulations are needed to facilitate access preparations (35, 38). A literature review on neonatal without discrimination. Such legal and policy frame- oxygen therapy in LMICs indicates that maintenance works support both health-care providers in their duties and indirect costs associated with oxygen procurement and parents in caring for their newborns during hospital- is a significant barrier to its availability. Even when ization and after. oxygen therapy is available, there are indications that some hospitals deliver it without pulse oximetry or Infrastructure other necessary monitoring equipment. This exposes Inpatient care of small and sick newborns requires a the newborn to unsafe oxygen use and the potential of purpose-built space that is separate from the general developing retinopathy of prematurity (39, 40). Countries paediatric unit and closely connected to the labour, can update their national essential medicine list to reflect delivery and postnatal wards. Minimum infrastructure the medicines and commodities required for small and for special newborn care includes water and sanitation sick newborns, such as safe oxygen use (35). Similarly, facilities, and rooms where parents can stay near their pharmacies should have standard operating procedures small and sick newborns. These should have space, regarding drug and vaccine storage, preparation, trans- beds and chairs for parents to provide KMC, and access port and inventory (to prevent drug stocks running out). to a continuous oxygen supply, pulse oximeters, basic laboratory testing and diagnostics (35). Intensive care for Equipment extremely small and sick newborns requires more infra- To deliver quality inpatient care, a facility should have structure, including 24-hour uninterrupted electricity and well-functioning medical devices and equipment avail- space for more complex technologies, such as assisted able, so that staff may diagnose, treat, communicate and ventilation, higher-level laboratory and radiology support. refer patients in accordance with national standards and Access to paediatric surgery should also be available. A regulations. To determine the quantity of medical devices unit’s size depends on the anticipated number of births. needed, national assessments that consider the follow- As a general rule, a special unit of 8–12 beds is sufficient ing issues can help with planning: health system policies, for hospitals with 3000 births per year. This is based on standards and protocols; health-facility capacity, activities an estimate of 3 beds per 1000 births, plus 30% addi- and organization; and existing replenishment/inventory tional beds to accommodate referrals from the lower systems for medical devices. level of care (36). Procurement officials should understand whether medical To promote family-centred care, space at or near the facil- devices, their installation and ongoing maintenance, are ity for parents or family members is needed. Within hospi- suitable for the specific environment and health needs. tals, and in partnership with local volunteer or civil society Biomedical engineers should be available to assist in organizations, adjacent spaces and maternity waiting equipment selection and maintenance, with regulatory homes can provide a retreat for rest and peer support. mechanisms in place to ensure technology availability and safety (equipment can break or go unused without the Health technologies requisite expertise) (41). This is especially important for Uninterrupted service requires a continuous supply of interventions with specific safety risks, such as respira- equipment, consumables and medicines. To keep the tory support, which require monitoring equipment (such flow of supplies well-stocked and operational, a facility as pulse oximetry) and humidifiers to be used safely. should accurately forecast needs; plan and distribute Equipment and diagnostic kits should always be clean, items efficiently and systematically; and conduct continu- with adequate room and storage. Temperature and humid- ous post-market surveillance to report any problems. ity should be monitored as they may affect reliability and

63 64 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© UNICEF / UN016486 / Shrestha of priority medicaldevicesof priority for for essential interventions essential diagnostics (42).Inaddition,the Interagencylist ence for countriesto updateordevelop theirown listof Diagnostics List,which asarefer isintendedtoserve WHO hasalsorecently publisheditsfirstEssential essential forcare. quality in linewiththelevel offers, ofcarethatthefacility are anddiagnosticservices, Adequate andreliablelaboratory be doneusingasingledropofbloodfromheelprick. glucose, haemoglobin,bilirubin andpH-level testscanall timely treatment,andcaremanagement.For example, can improve ofcarethroughcorrect diagnosis, quality may receive thewrongtreatment.Point-of-care testing receive thetreatmentthey needand,insomecases, incorrect diagnoses. As aresult,many newborns donot and jaundice.Lack ofaccesstosuch resultsin services such asinfection, hypothermia, hypoxia, hypoglycaemia diagnostic investigation toguidetreatmentofconditions Optimal caremanagementfor newborns requires Diagnostics any patient–especiallysmallandsick newborns. professionals andbiomedicalengineerspriortousewith other countries,they shouldbeassessedby procurement functionality. Ifequipmentdonations arereceived from - can beoptimized tominimize medicalerrors (52) . research canguide analysis ofhow workflow tasks and units sothatstaff work efficiently andsafely. Such effective way tolay outthephysical structure ofnewborn challenges thehealthsectortothinkaboutmost example, humanfactors andergonomicsresearch lessons learnedfromsectors outsideofhealth.For Innovative approaches canbewide-rangingandamplify Technology (NEST) programme inBurkinaFaso (Box 3.3). EssentialSurvival short timeasdescribedintheNeonatal ment, inpartnershipwithuserscanbringresultsa infrastructure buildingand targeted capacity develop- assessments, provide supporttoaddresslocal priorities, providers training inobstetricandnewborn careforof alltypes have thepotentialtoincreaseaccess to evidence-based ikins andotherequipmenttosimulatemedicalscenarios supplies.Mobiletechnologiestricity andtheuseofman- caused by alack elec- ofbiomedicalengineersorstable with long-lastingbatteries canhelptoovercome barriers jaundice, includingbilirubin Durableequipment testing. temperature monitoringdevices; anddevices tomeasure triggers/reminders for provider handhygiene; wearable seed bagstoprevent hypothermia duringtransportation; andculturally appropriateKMCwraps;microwavabletory (47–51). Systematic approaches thatuseneeds such asfilteredsunlight;ambula- include: phototherapy devices ing productsandtechnologies priate care(46).Otherpromis- likelihood oftheirreceivingappro- newborns andincreasethe viders whotriageanddiagnose would supporthealth-carepro- 45). Point-of-care diagnostics deaths in Africa each year (44, would prevent 178 neonatal 000 in centralanddistricthospitals pressure(bubbleCPAP)airway cost bubblecontinuouspositive newborns. For example, low- care forquality allsmallandsick potential toaccelerateaccess health-care technologies have the Innovative andcost-effective Innovation health care(43). required atdifferent levels of resource for thediagnostics and child healthprovides auseful reproductive, maternal,newborn CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver

Box 3.3 Nine steps to success in Burkina Faso

The Neonatal Essential Survival Technology (NEST) This new unit opened in 2017. While it is too early programme aims to reduce neonatal mortality to assess its full impact on neonatal mortality, the by improving the quality of care for newborns in following changes in care practices have already several sub-Saharan African countries. The pro- been observed: gramme launched in 2015 at Saint Camille Hospital • Skin-to-skin contact and KMC are practiced in a in Ouagadougou, Burkina Faso. The programme has dedicated area equipped to welcome newborns nine steps and receives funding from the Chiesi and engage parents in care, with the support of Foundation. Implementation is led by local staff and dedicated staff; international experts, with inputs from organizations in regional and national government. • Developmental care practices have been introduced, such as correct positioning and nursing NEST began with a hospital assessment of newborn care, pain control, and managing the care environ- care services and identified a critical need for ade- ment to reduce stress in newborns. quate layout and organization of the neonatal care unit (Fig. 3.3). Key services including KMC were not These changes stem from an integrated approach to being provided, partly due to small room size. A new all aspects of newborn care, with implementation neonatal care unit was constructed and furnished based on local needs and priorities. Initial results with appropriate equipment required to provide show that collaboration between staff and inter- optimal care. Additional audits helped to priorit`ize national experts, along with a guiding framework, next steps, such as training for local staff and devel- has the potential to significantly improve care and oping guidelines and protocols. prompt sustainable change.

Fig. 3.3 Key steps in the NEST programme

Assessment of the needs Evaluate needs of hospital in terms of neonatal care, in particular for sick and low birth weight newborns

Monitoring Layout and organization Implement a system of data recording and management (statistics, Set up the best possible neonatal unit medical records, etc.) in a hospital with limited resources

Network and collaboration Set of basic products Create a network with other hospitals Identify essential drugs and basic equipment and birth centres for neonatal care, in terms of simplicity, adaptability, costs and maintenance

Training on the job Guidelines and protocols Increase competencies of local Develop a set of protocols, manuals staff already in neonatal units, and guidelines for the local hospitals through bedside training

Empowerment and recognition Master programme in neonatology Empower parents and families Train dedicated and Value the role of the neonatal nurse specialized nurses and doctors

65 66 SURVIVE AND THRIVE: Transforming care for every small and sick newborn after discharge frominpatient care(seeChapter4). system for parents,caregivers andfamilies duringand outcomes to enhancefeeding, neurodevelopmental andsocial in newborn inpatient care,buttheirinputcanhelp chologists. Such specialistsmay notwork full-time therapists, physiotherapists, socialworkers, andpsy speech consultants, lactation therapists,occupational health-care providers such asnutritionists/dieticians, teamshouldincludeother A widermultidisciplinary working alongsidequalified nurses andmidwives (38). andothersupportstaff,doctors, nursingassistants, teamsshouldincludepaediatricorneonatal tidisciplinary mixofskills,coremul- In ordertoprovide thenecessary Multidisciplinary teams care, and1:2–1:4inspecialcare(54–56). intensive Kingdom recommendsratiosof1:1inneonatal plan resourcestoimprove inpatientcare. The United special newborn carelevel (36). These canbeusedto recommends nurse-to-patientratiosof1:3–1:4for the on safe staffing levels orratioscare,India for neonatal there arecurrently nointernationallydefinedstandards numbers ofqualified nurses working pershift (53).While and sick infacilities newborn survival iscloselylinked to for smallandsick newborns. Research shows thatsmall and midwives provide mostoftheclinicalhands-oncare In mostcountries,regardlessofthelevel ofcare,nurses Nurses patient ratiosandskillsmix. skills. Specialattention shouldbepaidtobothstaff-to- complexity increases,sodoestheneedfor specialized health-care providersbetweencountries;ascare vary 3.2). health facility (Fig. The rolesandresponsibilitiesfor tencies dependonthelevel ofcaretobeprovided ata specific competencies. The recommendedcorecompe- Providers whocarefor smallandsick newborns require cy-based orspecialized training(38). require attention aresafe staffing levels andcompeten- gaps inthehealthworkforce (38). The majorareasthat this level ofcareisoften absentandtherearesignificant doctors andnurses)withspecialized skills.InLMICs, appropriately educatedhealth-careproviders (primarily Care shouldbedelivered teamof by amultidisciplinary 24hoursaday,continuous services, seven days aweek. Inpatient carefor smallandsick newborns requires health professionals Teams ofcompetent andmotivated Who provides care? (54). They alsoform partofabroadersupport -

tions for smallandsick newborns. Task-shifting and or antibiotics. This may- limit theavailability ofinterven suchprovide interventions, certain asprescribingoxygen In somecountries,onlyphysicians may beauthorized to Task-shifting andtask-sharing ties for mentoring and supervision of morejuniorstaffties for (38). mentoringand supervision experiencegain neonatal andcreatesessentialopportuni- enablesnursesto rotation strategically limitinghospital clinicalcaregivers forprimary smallandsick newborns, caring for smallandsick newborns. As nurses arethe to otherpatientcareunitscanleave thelessexperienced policiesthatmove rotation Hospital experienced nurses neration, andtakegenderissuesintoconsideration(57). performance skillstraining, recognitionandremu- natal the provisiongoodworking ofhousing, conditions, neo- care providers, especiallyinrural areas,shouldinclude areas parities incareandoutcomesbetweenurbanrural specialist staff for remoteareas,which canleadtodis- shortages. There areparticularchallenges inrecruiting for smallandsick newborns whentherearesevere staff It isimpossibletoprovide quality, people-centredcare Staff recruitment anddeployment strategies (38). Policies designedtoattract health- andretain

© Ornella Lincetto / WHO CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver task-sharing can be useful strategies to cope with small A country’s plans for a national health-care workforce numbers of specialized staff. Task-shifting is “a process also require guidelines on recruitment, training, deploy- of delegation whereby tasks are moved, where appropri- ment, retention, accreditation and certification, super- ate, to less specialized health workers” (58). Task-sharing vision, task-shifting, human resource management aims to create “a more rational distribution of tasks and leadership (64, 65). They should be written when and responsibilities among cadres of health workers to a country plans and organizes a network of facilities to improve access and cost-effectiveness” (59). provide maternity and neonatal services. Countries that have health information systems should also strengthen Such strategies should be designed and implemented and manage this function. The system should be updated in parallel with the removal of restrictive policies or with staffing norms for inpatient care of small and sick laws. Where implemented, task-shifting and task-shar- newborns. Data should be used to plan newborn care at ing should be formalized, to prevent confusion in roles all levels within the health system (66). and responsibilities for those who provide care; and be accompanied by training and supervision. Education and mentoring to improve quality Education and meaningful mentoring can greatly improve For example, appropriately trained nursing auxiliaries or quality of care and contribute to ongoing professional health-care assistants could support and maintain KMC. development. Partnerships between universities and This occurs in Malawi where health surveillance assistants facilities to coordinate health-care provider education for are trained to promote inpatient care for sick newborns those involved in small and sick newborn care have been and provide support to mothers in the KMC units (60). shown to have a positive impact on health-care provider competencies, which can ultimately reduce newborn At the special newborn care level and higher, policies deaths and disability (see Box 3.4). can allow specialized and experienced nurses and midwives to handle a range of tasks or offer training where For example, UNICEF led successful collaborations skills gaps exist. Nursing assistants and auxiliaries can that involved training and on-the-job clinical mentor- also take on essential and routine nonskilled tasks; for ing in Tamale Teaching Hospital in Upper East Region, example, to clean equipment and restock shelves. This frees nurses to focus on skilled clinical care. Box 3.4 Nurses as leaders for Training and retention quality improvement While the priority is to build the neonatal competencies of existing health-care providers, it is equally important “Willingness of health-care providers to change is to strengthen pre-service education in neonatal care the key; this is what the science of quality improve- for all trainee health-care providers, especially doctors ment teaches us. Policy statements issued as whips and nurses. This requires links between hospitals and to health-care workers by administrators or publish- universities and a learning environment within hospitals ing guidelines is not enough. We should aim to reach for nurses, midwives, medical students and other people special care, decreasing irrational use of antibiotics, in health training. decreasing unnecessary admissions, or addressing local problems applicable to other units. Making As services are developed, countries need to take the quality improvement teams and keeping nurses as important step of creating or expanding their neonatal the primary drivers of this change in special care is nursing cadres (38, 61). They should also seek to provide important. With a robust online data system in India, neonatal care courses with competency-based curricula quality improvement implementation will make and corresponding accreditation with international stan- tracking possible. This will open up collaborative dards. Incentives, such as increased remuneration or the quality improvement networks for special care.” establishment of a neonatal nursing cadre, help to recog- Extract from a speech given by Dr Ashok Deorari nize the profession, promote responsibility, improve staff on 26 December 2017 during a Point of Care Quality retention and increase job satisfaction. In many countries, Improvement workshop at the All India Institute of advanced neonatal nurse practitioners provide primary Medical Sciences (AIIMS). Dr Deorari is Professor patient management for small and sick newborns with of Pediatrics at the WHO Collaborating Centre for significant success(62, 63). Specialist doctors are also Training and Research in Newborn Care at AIIMS. needed, especially for diagnostics or treatment decisions.

67 68 SURVIVE AND THRIVE: Transforming care for every small and sick newborn essential newborn carehasbeenfound toimprove skills Islands, thePhilippinesand Viet Nam).Coaching onearly Republic, Mongolia,Papua New Guinea,Solomon East Asia (Cambodia,China,LaoPeople’s Democratic inSouth- mortality that accountfor 98%ofneonatal introduced in12 countries countriesincludingin8priority a website (69).Earlyessentialnewborn carehasbeen essential newborn careguidelinesandindicators has acoaching andmentoringprogramme,withearly The WHO Regional Office for the Western Pacific also ing programme(68). small newborns train- undertheirHelpingBabies Survive Pediatrics developed amobileappfor essentialcarefor of MedicalSciencesandthe American Academy of access onlinefreeofcharge (67). The All IndiaInstitute clinical trainingapp,which health-careproviders can ImprovementCare Quality manualsanddeveloped a for South-East Asia supportedthecreationofPoint of Similarly,in districthospitals. the WHO Regional Office Bangladesh. These aretertiary-level facilities withNICUs Ghana, andtheBangabandhu Sheikh MujibUniversity, In 2012, Ihadtheopportunity to work witha With proper skills, Imay have beenableto save them. stop thinkingaboutallthenewborns Ihadseendie. harmful to newborns rather thanhelpful. Icouldnot tation; from there Irealized thatmy poorskillswere first opportunity to betrained inneonatal resusci- After oneyear working intheneonatalunit, Ihadthe newborns, Ifeared Iwould harm them. knowledge andskills. When Iwas left alonewiththe worries andanxietyrelated to my lack ofneonatal single day spentontheneonatalunitwas filledwith unit were too busyto train me. Consequently, every orientation programme andtheseniornurseson was my firsttimeina neonatal unit. There was no have theknowledge, skillsorneonataltraining. It I was terrified to work intheneonatalunit!Ididnot adults, butitwas anorder Ihadto follow. not my choice, my preference beingto work with Rwanda MilitaryHospitalintheneonatalunit. Itwas appointed by theMinistryofHealthto work atthe the University ofRwanda nursingschool. Iwas My story began in2011, whenIgraduated from By Pacifique Umubyeyi Box 3.5From novice toadvanced specialist neonatalnurse policies, practicesandresourcesalignedaccordingly ship shouldbesupportive offamily-centred care,with The healthsystem’s carevalues, culture andleader newborn andasasourceofsupportfor themother. astheyis important canplay aroleascaregivers to the for thecareoftheirnewborns. The inclusionoffathers tional needs,for theirown healthandwell-being and needs, includingtheirphysical, physiological andemo- ant for healthsystems toacknowledge theparents’ anddifficultuncertainties; Itisimport- decision-making. tion fromtheirnewborn and/orfamily support;medical unsettling environmentorfacility: separa- ofahospital Parents canencounterstressinmany ways duetothe The family experience isakey care. aspectofquality Parental involvement incare (70) areusefulexamples for LMICs. Centers for DiseaseControlandPrevention resources Improvement manualsandcasestudies (67),andthe Other resources,such asthePoint ofCareQuality staff have beentrainedmultiple timesby othermethods. greatly andchange practices(seeBox 3.5),even where improve neonatal outcomesinRwanda. neonatal professional careers andwillundoubtedly a strong conviction thatitwillgo far to promote Nurses, orRANN. Itisanewassociation, butIhave newly formed Rwanda Association ofNeonatal of practice to guideourcare. Iamamemberofthe fessional neonatalcareer pathwithnoclear scope as nursesandmidwives tryingto establishapro- lack ofstaff andresources. We have many challenges country. Despite this, ourlevel ofcare islimited by a working atoneofthebest neonatalunitsinthe Today, Iamaqualified MScN neonatalhealthnurse tology track –students attheUniversity of Rwanda. first cohort ofMasters ofScienceinNursing–neona- leading ourNICU, Ihadtheopportunity to beinthe guidelines, protocols andpolicies. After two years of manager, working withmy mentor to create clinical the hospitalopenedaNICUandIbecameunit caring for themhasbecomemy passion!In2013, in caring for newborns was enhanced. Sincethen, Through hermentorship, my abilitiesandconfidence for thehumanresources for healthprogramme. neonatal nursewhocameto thehospitalasamentor - CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver (71–73). This should include making a charter indicating There are several strategies to strengthen partnerships newborn and associated parental rights clearly access with parents, families and communities in the care of ible to all caregivers. small and sick newborns at all levels of care. Some have already been highlighted in this chapter, e.g. space for Parents make unique contributions by being able to families in the rooms and overall parent involvement in observe, monitor and provide care to their small and sick daily care, in comforting or feeding their newborn. Parental newborns (when appropriate, under supervision and in education on how to care for their newborn, in the facility partnership with the health-care team). Engaging parents and after discharge, should accommodate their schedules and families in this way can provide the following ben- and learning requirements. Similarly, health-care provider efits: boost parent–newborn attachment; ensure higher education on family-centred care and the parents’ role is breastfeeding rates; facilitate earlier discharge; improve critical. Peer support can be another crucial element of a long-term neurodevelopment; encourage reciprocal, cue- comprehensive family-support programme (Box 3.6). based interactions; promote developmentally supportive care; and improve health-related knowledge and beliefs among parents and communities (74). In such an envi- Ensuring access to quality care ronment, health-care providers can follow family-cen- for all without discrimination tred care principles and demonstrate them during their interactions with parents and family members. Family- Under the Convention on the Rights of the Child, it centred care helps parents feel confident and better is a fundamental right for newborns and their fami- prepared after discharge to succeed as the primary lies to be able to access the health care they need. caregivers for their newborns (75). Family-centred care Unfortunately, this right is not respected or protected also benefits the mental health of parents(72) . in all settings. Currently, there are limited data on the

Box 3.6 Family support programmes in Uruguay

Ronald McDonald House Charities® (RMHC) was with government agencies, the private sector, and established in Uruguay in 2011 as “Asociación Casa other nongovernmental organizations. They would Ronald McDonald Uruguay.” The association oper- be indispensable for sustainability. Plans started ates two Ronald McDonald with a needs assessment and direct involvement of Houses at Hospital Pereira both hospitals’ boards of directors and the Ministry Rossell in Montevideo, the of Health. capital of Uruguay, and Because of these collaborations, the RMHC pro- Hospital de Tacuarembó grammes were established on hospital premises. in Tacuarembó. The latter Parents can access meals, space for personal hygiene Asociación Casa is a rural area where little Ronald McDonald and rest, health education and basic training in com- Uruguay health care is available puters, reading and writing. Both Ronald McDonald ® Keeping Families Close beyond the regional Houses serve four meals per day and are heavily hospital. dependent on volunteers. RMHC health education Both programmes primarily serve the small and classes are designed to strengthen the families’ abil- sick newborn care facilities in their partner hospi- ities and skills in breastfeeding and bathing, and to tals. Together they served more than 3600 socially, prepare them for the delivery and care of premature economically and medically vulnerable children and infants. Specialists teach parents how best to stimu- families in 2017. The Uruguay health sector’s rela- late premature children and promote attachment. tionship to RMHC is a powerful example of potential Executive director Sandra Marcos said: “We prioritize benefits from a partnership between the public and that the family nucleus remains united to take care voluntary sectors to promote family-centred care. of sick children. That’s why we provide help not only When RMHC began to establish a chapter in to mothers, but we strongly support parents to take Uruguay, it recognized the need to build alliances an active role.”

69 70 SURVIVE AND THRIVE: Transforming care for every small and sick newborn on thenumberofnewborns whoneed care,andtoweak access care. This isduetolack ofpopulation-level data overall proportionofsmallandsick newborns whocan high patientmortality, understaffing and facilities faced majorchallenges, such as of allneonataladmissions. These public four publicfacilities accounted for 71% private sector (29out of33). However, just The majority offacilities identified were any facility-based care. 44.5% ofnewborns inneeddidnotaccess ty-based care in2014–2015 (79), while in Nairobi accessedhigh-quality facili- Only 24.9%ofsmallandsick newborns knowledge questionnaire (78). patient records andcirculated anursing and conducted areview ofregisters and infrastructure, equipmentandsupplies, neonatal services. Italsoassessedfacility private sectors, thatprovide 24/7 inpatient It identified all facilities, across publicand require care inNairobi CityCountyinoneyear (77). study calculated thenumberofnewborns who Based onaliterature review andexpert input, the improve serviceplanning, qualityandcare delivery. supplied evidenceto policy-makers andproviders to per 1000 live births). The Nairobi Newborn Study than elsewhere inKenya (39compared with19–25 However, theNMRinNairobi isconsiderably higher facilities, compared with61.2% atnationallevel. estimated 88.7%ofbirths take placewithinhealth tion lives inslumsandincomeinequalityishigh. An In Nairobi CityCounty, Kenya, 60–70%ofthepopula- Box 3.7Effective coverage ofnewborn inNairobi, services Kenya bad politics”. progressive, unfair economicarrangements and of atoxic combinationofpoorsocialpoliciesand any sensea ‘natural’ phenomenon, buttheresults that existare morally unacceptableand “not in populations...The tremendous healthinequities protect, andfulfilthe rights to thehealthoftheir … itistheresponsibility ofnationstates to respect, Commission onSocialDeterminants of Health, quoted inOttersen etal.(76). Fig. 3.4Newborncoverage services inNairobi 19.5% 24.9% (e.g. congenital malformations; congenital pretermbirth).Newborns (e.g. conditions or rural andneonatal residence;orethnicity) status; socioeconomicstatus; urban education andmarital and/orhouseholdfactors mother’sof parental (e.g. age; to accesscare.Discriminationmay berelatedtoavariety It iscriticaltocreateequalopportunities for allnewborns sistent discrimination,particularlyagainstvulnerablegroups. cultural factors. Many ofthese barriers aretheresultofper andamultitude ofsocialeconomic,legaland of services, Barriers toaccessingcareincludeinadequateavailability (seeBox 3.4). 3.7andFig. services dence-based planningtoimprove care accesstoquality further). Measuringeffective coverage cansupportevi- within healthfacilities (Chapter5explores theseissues information systems andpoorrecordingofadmissions planning to improve care accessandquality. sured effectively andusedto support evidence-based provides anexampleofhow coverage canbemea- multisectoral planningandinvestment. This study poor populationwillrequire effective long-term, Reducing highNMRinthisurban, predominantly and supplies. monitoring ofpatients; andabsenceofequipment of antibiotics, oxygen andfeeding/fluids; infrequent care-specific documentation; incorrect prescription among smallandprivate facilities, included: lack of overcrowding. Quality-related issues, particularly 10.9% 44.5% 0.3% Low quality Medium quality High quality NA No care - CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver with special needs, such as congenital abnormalities, and efforts to conduct real-time monitoring of data in special special circumstances may be deprived access. Abandoned newborn care units (SNCUs) and to identify states newborns are particularly vulnerable (80). with low levels of female admissions compared to male admissions (see “Boys or girls?” in Chapter 2). In Migrants and ethnic minorities addition, the Indian Academy of Pediatrics and many Migrant and ethnic minority status, as well as related other states in India have taken initiatives to address the cultural and socioeconomic barriers, can adversely affect gender gap in care-seeking for newborns. The National people’s utilization and experience of care. Language bar- Neonatology Forum declared 2017 as the “year of the riers can compromise communication between providers female newborn” and advocated for parents of female and ethnic minority parents, which may limit their access newborns to complete their stays as needed in special to care (81). Hospitals in the United Kingdom’s Newborn care and to comply with admission referrals. Improvement Collaborative for Quality adopted quality objectives, indicators and measures to minimize such Newborns with congenital abnormalities inequities (Table 3.1) (82). In many settings, newborns with congenital abnormalities do not have access to the care they need to survive Girls and boys and thrive with minimal disability. That may be due to To reduce neonatal mortality disparities between limited availability of services or to discrimination against boys and girls that are prevalent in many countries, it these newborns. The result is low levels of care-seeking, is essential to address gender bias (see Chapter 2). family-centred care engagement and medical attention. Advocacy efforts should measure disparities and use Many birth defects also require corrective surgery, such evidence to guide the call for pro-female policies and as cleft lip/palate, and may remain untreated. incentives to reverse negative social norms and practices, where they exist. For example, to reduce gen- There are several options to address access inequity. der-disparity, UNICEF/India supports the government’s These include building surveillance mechanisms for birth

Table 3.1 Indicators in the United Kingdom’s Newborn Improvement Collaborative for Quality (2007)

Objectives Measures

To collect data on race, ethnicity • Are patient/parental data properly documented in the chart? and primary language

To ensure that all patients • Did the patient (grouped by gestational age, disease process and so on) receive receive a standard of care that those treatments documented as the standard of care in your unit? matches their needs • Of those that did not receive the standard of care, stratify by race/ethnicity/language

To improve the cultural • Percentage of staff who completed cultural competency training competency of staff • Results of patient satisfaction surveys

To make appropriate use of • Percentage of parents/families who are documented as not having majority interpreter services language (e.g. English in the United Kingdom) as their primary language and who actually received interpreter services • Results of patient satisfaction surveys

To create and ensure the optimal • Was parent input a part of the creation/approval process for educational materials use of education material used in the hospital? • Results of patient satisfaction surveys

Source: Vermont Oxford Network. Newborn Improvement Collaborative for Quality (82).

71 72 SURVIVE AND THRIVE: Transforming care for every small and sick newborn facilities incaringfor abandonednewborns, andtheir The legalimplicationsofabandonment,therolehealth strengthen andreform nationalchild protectionsystems. (84). They shouldbeconsultedfor policy reform andto adopted by theUnitedNationsGeneral Assembly in2010 Guidelines for thealternative careofchildren were when afamily isabsentshouldbedeveloped. Guidance for how toapplyfamily-centred careprinciples to thefamily-centred careapproach aspossible(84). compassion anddignity, andwith anapproach asclose should beinplacetoensurethatallcareisdelivered with and responsiblefoster oradoptive families. Processes This shouldideallyinvolve closerelatives, orcompetent infant orchild whoislivingaway fromhisorherparent. ment, formalorpermanent,for orinformal,an temporary their family need “alternative care”, definedasany arrange- erations. Newborns whoareabandonedorseparatedfrom Abandoned newborns meritspecial programmingconsid- Abandoned newborns ing folic acid,iodineandB6deficiencies(83). possible, such asvaccinating againstrubella andcorrect- defects carewhere shouldbeincorporatedintoantenatal 4 and5).Cost-effective measurestoprevent congenital ology, diagnosisandprevention (describedinChapters developing tostrengthenresearch thecapacity onaeti- defects intonationalhealthinformation systems and Metrics Research Consortium (89). questionnaire developed by thePopulation Health interviewed usingtheverbal andsocialautopsy givers ofnewborns whodiedwithin28days were Xinjiang in Western Chinain2011. A total of266care- autopsies were appliedinrural areas of Yunnan and tality withinsocietyandthehealthsystem, social To identifymodifiable determinants of child mor and behaviours withinfamilies andcommunities. enhanced, alongwithchanges to culture, attitudes technology andhospital servicesneededto be in asustainableway, thegovernment recognized and urbansettings (87, 88). To reduce child mortality addition, there are great disparities between rural deaths occurring inthefirst week oflife (86). In China’s under-5 mortality, with70%ofneonatal targets, neonataldeathstillaccountsfor 60%of Although Chinaisontrack to achieve theSDG3 Box 3.8Chinaaddressessocialandfinancialbarriers -

of theFilipinopopulation(90million). The prematurity and sick newborn care.PhilHealthcovers morethan90% added toPhilHealthinsurancecover thecostsofsmall in thePhilippines,aspecialprematurity package was of newborns, includingpretermnewborns. For example, ance schemes, voucher schemes) tocover inpatientcare health schemes throughend-userincentives, (e.g. insur Countries shouldalsolooktoexpand existing maternal impact ofhighcostsanddebt(38,85). introduced toprotectat-riskgroupsfromthesevere such healthinsurancesystem, canbe asamandatory expenditures. Healthfinancingandprepayment systems, andtoallocate,reporttrackservices resourcesand of planstofinanceadefinedset put inplacesustainable policies. Countriesshouldaddressfinancialbarriers and small andsick newborns aspartoftheiroverall RMNCH for andservices comprehensive, interventions quality policies onUHCshouldspecifyguaranteedaccessto newborn health-careaccessoritscompletion.Country from work for anextended period,cancreatebarriers to coupled withthelossofwages when parentsareaway poorest households(81).Highout-of-pocket expenses, isusuallyhighestfor thoseborninthe mortality Neonatal Financial barriers specified innationalpolicies. transition intosafe custodyandadoptionshouldalsobe developed contingency plansfor referrals. caregivers ofthedanger signsinnewborns and poses. The government alsoraised awareness among identified an average unitcost for budgeting pur sick newborn care. Advocacy efforts successfully insurance coverage by includingtransportation and China usedthesefindings to improve itsnewborn newborn’s sickness was incurable (20.4%). transportation barriers (21%), andthebeliefthat poor awareness oftheseverity oftheillness(26%), First delay was dueto high medicalcosts(54%), (accessing care), and1%third delay (receiving care). first delay (decision to seekcare), 7%seconddelay breastfed. About half (45%)ofnewborns experienced borns were insured. Onlyhalfofallnewborns were (97.4%) were medicallyinsured, only7.5% ofnew newborns were born inhospital. While most mothers The results show thatapproximately 90%ofdeceased - - - CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver package has benefited newborns who require hospital Table 3.2 High neonatal mortality rate (NMR) admission and follow-up support since 2015. Bhutan has a and humanitarian crisis or conflict, 2017 free care policy for preventive and curative services for the entire population, including mothers and newborns, that Country NMR, 2017 uses a combination of taxes and a health trust fund for the 1. Pakistan 44 purchase of essential medicines and supplies. In China, free childbirth care was expanded to cover small and sick 2. Central African Republic 42 newborn care, including transportation costs and broader 3. South Sudan 40 advocacy efforts to identify small and sick newborns in the community earlier and improve their care (Box 3.8). 4. Afghanistan 39 5. Somalia 39

Newborn health in humanitarian crises 6. Lesotho 38 7. Guinea-Bissau 37 It is important to reiterate that of the 16 countries with 8. Mali 35 the highest NMR, 11 have experienced recent humanitarian crises, whether via political instability or conflict (see 9. Chad 35 Table 3.2). Countries are also increasingly struggling with 10. Côte d’Ivoire 34 natural disasters. Whatever the cause, these crises leave women, newborns and children particularly vulnerable. 11. Mauritania 34 Any global response to improve maternal, newborn and 12. Sierra Leone 34 child health must include an explicit focus on humanitarian settings and mobilizing resources to ensure the 13. Nigeria 33 delivery of protective and lifesaving services. 14. Benin 33

Accessing care 15. Comoros 32 Care-seeking both for mobile and static populations during 16. Djibouti 32 humanitarian crises is a challenge for multiple reasons. Sources: World Bank, Harmonized list of fragile situations 2018; United Mobile populations may be unfamiliar with their surround- Nations Inter-agency Group for Child Mortality Estimation. Estimates for ings or the location of the closest health facility, so initial NMR in 2017. access to a health facility may already be low. This leads to high rates of home births and low rates of care-seeking. Additional factors that may impede care-seeking include: will deploy the Minimum Initial Service Package (MISP) fear that the chance of harm outweighs any benefits for Reproductive Health in Crisis Situations. The package of care; restrictions due to curfews, blockades, cultural outlines crucial actions required to respond to reproduc- practices, unsafe roadways (e.g. due to land mines); and tive health needs at the onset of every humanitarian crisis. uncertainty about availability of required services and It details the lifesaving activities, services, equipment and whether care will be culturally appropriate (addressing drugs, including for newborn care, that providers should privacy or communication barriers). In addition, families prioritize in an acute emergency response (90). may face limited access due to “statelessness”, damaged infrastructure, lack of transportation, or affordability; and Guidelines on service provision language barriers between emergency responders and Developed via an inter-agency collaboration, the beneficiaries. There also may be concerns about disre- Newborn Health in Humanitarian Settings Field Guide spectful care experiences (actual or perceived), ethnic summarizes existing WHO standards of care for targeting and discrimination, and related mistrust about newborn health with additional guidance on how to the quality of services and advice provided. provide the services in the context of a humanitarian setting (91). The field guide prioritizes the most critical Despite these challenges, emergency responders should health services and supplies to prevent and manage the work hard to ensure that women have access to care three main causes of newborn death. It also includes during pregnancy and delivery, and that mothers and tools to design, manage, monitor and evaluate services newborns receive postnatal care in a timely manner. In the and newborn care supply kits (pre-packaged kits contain- initial phase of an emergency response, many agencies ing critical medicines, drugs and supplies – see below).

73 74 SURVIVE AND THRIVE: Transforming care for every small and sick newborn **The 1500 deliveries level levels. areat hospital healthcare andcommunity only anddonotincludedeliveries atprimary healthcare/cliniclevel*The deliveries 300 are atprimary onlyanddonotinclude deliverieslevel. atcommunity Table 3.3Newborn CareSupply Kitsfor different levels ofcare healthset-upssuchtemporary asincampsortemporary/ a minimumsetofequipmentandsuppliesfor usein caused by disruption toahealthsystem, andtoprovide Newborn CareSupplyKitsareintendedtofillthegap of care for humanitarian settings Newborn care supplykitsandlevels dizing breastfeeding withintherestofpopulation. non-breastfed children shouldbesupportedwithoutjeopar breastfeeding shouldbeprovided inemergencies,andhow in 2018 (93). This guidancespecifies how support for lished in2017 andendorsedby the World Health Assembly others –developed operationalguidancethatwas pub- organizationsand international NGOsandcivilsociety Core Group–acoalitionthatincludestheUnitedNations, In arelatedinitiative, theInfant Feeding inEmergencies SettingsHumanitarian (92). the Officially launched in2018, itcomplementstheMISPand Use Instructions Population health kit reproductive Complementary Inter-agency FieldManualonReproductive Healthin Community level kit by communityhealthworkers. Part B: Itemstobeheldandused to everypregnantwoman. Part A: Packaged fordistribution newborn care. use thekitcontentsforessential education materialsonhowto Illustrated instructionsand of 10 000 people. of 10 000 forapopulation health workers that therewillbe10 community Part B:Basedontheassumption three months. in there willbe100 deliveries with acrudebirth rateof4% that inapopulationof10 000 Part A: Basedontheassumption Fund, orUNFPA). kit (UnitedNationsPopulation inter-agency health reproductive Kit(Kit 2)ofthe Clean Delivery Primary level kit infection priortoreferral. and tostabilize thosewithsevere resuscitation, pretermnewborns uncomplicated births, newborn Essential newborncarefor parents andfamilies. equipment andhowtocounsel demonstrate howtousethe Training shouldbeprovided to For usebytrainedpersonnel. develop complications.* of thosesmallnewbornsmay preterm and/orLBWand20% months. Ofthese,18% maybe inthree deliveries will be300 a crudebirth rateof4%there with in apopulationof30000 Based ontheassumptionthat health kit(UNFPA). of theinter-agency reproductive Kit(6A andB) Clinical Delivery - and sick newborn careshouldincludecontingencies A proactive emergencypreparednessplanfor small in ahumanitarian setting Care coordination andreferral advanced careandappropriatelytrainedstaff. neonatal orfacilityhasadedicatedspacefor ordered ifahospital bacterial infection. Additional advanced careitemscanbe totreatpossiblesevereical cordcare;andgentamicin expressed breastmilk;scales;chlorhexidine for umbil- items asblankets andhats;KMCwraps;feeding cupsfor (Tablehealth facility; andhospital 3.3).Kitsinclude such across threelevels clinicalorprimary ofcare:community; inthefieldAs detailed guide,thekitsareorganized coordination betweenagencies. toeliminatewasteordered simultaneously andimprove through UNFPA. Itisrecommendedthatbothkitsbe the Reproductive HealthKits,which canbeprocured field Newborn hospitals. caresupplykitscomplement Hospital level kit complications. preterm newbornswith resuscitation, andcarefor newborn infections, Referral-level careof if key competenciesarelacking.if key should notbeincludedinthekit supplies areavailablebut settings. Advanced hospital Items areapplicableformost For usebytrainedpersonnel. develop complications.** of thosesmallnewbornsmay preterm and/orLBWand20% months. Ofthese,18% maybe inthree deliveries will be1500 a crudebirth rateof4%,there with in apopulationof150 000 Based ontheassumptionthat (UNFPA). health kit agency reproductive (11A, 11B and12) oftheinter- Referral EmergencyObstetricKit

CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver

Box 3.9 Saving newborn lives in refugee settings: experience from three countries

Between January 2016 and December 2017, the countries, care for small and sick newborns faced the United Nations High Commissioner for Refugees same key challenges found at baseline: inadequate launched an evaluation of neonatal care services space or improper infection control of spaces, dedi- in camp-based settings in South Sudan, Kenya and cated staff, and accommodation for parents. Jordan. Context-specific adaptations were needed The evaluation’s recommendations for neonatal for each setting. It was important to include training care services include: initiate a newborn technical and to distribute supplies to the facilities that served working group to support camp-wide policy changes the host population, since they were often the main and implementation; improve uptake of KMC; ensure referral point for newborns in the camps. proper management of small and sick newborns; The evaluation confirmed that KMC is a successful identify critical facilities and invest in adequate and important intervention for small newborns, as space and staffing; investigate the cost-effectiveness is counselling on newborn danger signs. However, of referring stable, small and sick newborns; and the evaluation also showed that, across all three improve follow-up for referred newborns.

Source: External evaluation of the UNHCR project, UNHCR unpublished report 2018.

for referral and transport to care. Even in the most ideal should be available at all hospitals, health centres and situations – for example when facilities are equipped to camp facilities. Similarly, peer support groups and vol- provide care, trained health-care providers are available, unteers can help to minimize referral delays when they and women are counselled on seeking care – referral are able to identify mothers and newborns in need of systems can be critically hampered during a conflict. emergency care. Ambulances and other modes of transport may not have access to the patient or to the facility, or the referral path WHO is working with Members States and humanitarian may be unsafe. An ambulance that enters a camp may partners to strengthen emergency preparedness and have trouble finding a woman or newborn in an over- response, including the capacity of emergency medical crowded situation with no standard address or roads. teams. Efforts are ongoing to identify and prioritize Health-care providers may not be available or allowed research needs for newborn care in humanitarian set- to travel during periods of conflict or through certain tings and results are expected to be available in 2019. areas, and curfews imposed to ensure safety may interrupt critical access to care. Beyond issues of insecurity, corruption may become a problem, with some workers demanding bribes and making the cost of care too high for women and families. Overcrowding also can mean that newborns needing care are kept in unsafe or inappropriate areas, often separated from parents or other caregivers for long periods of time.

For these reasons, it is important to develop a careful referral network plan, and to liaise and coordinate with other parties to resolve secure access issues and negotiate safe corridors. When dealing with refugees and displaced people, it is important to adapt the response taking into consideration the needs of the host population (Box 3.9). Clear proce-

dures for ambulance requests and contacts © UNICEF / UN0205039 / Zehbrauskas

75 A NURSE’S STORY

“She provides the best patient care”– The story of a Neonatal Nurse

Pakistan has the world’s highest neonatal mortality rate (44 deaths per 1000 live births), and nurses, like Anila Ali Bardai, are at the frontlines every day to change this. At the Aga Khan University Hospital in Karachi, Anila has sought to improve outcomes for Pakistan’s newborn babies for over 10 years. As the Head Nurse of the Neonatal Intensive Care Unit, she has focused her efforts on the quality of care and improving the training Transforming care for every small and sick newborn of nurses and students working in newborn health. Each day, Anila offers counselling to grieving parents and helps new mothers cope with the stress of caring for their sick babies. Her contributions have helped stan-

dardize newborn care throughout the hospital and have © Ayesha Vellani / Save the Children resulted in improved infection rates, decreased facility- based newborn mortality and reduced length of stay of evidence-based practices in the neonatal care unit and SURVIVE AND THRIVE: AND SURVIVE patients. Anila has also been involved in outreach work teaches new staff and students. for newborn care, gaining wide community respect. She has been a catalyst in standardizing the care of As one colleague says, “She always initiates to provide newborns in all the hospital’s units including Well Baby best patient care … and makes herself available. She Nurseries, Patient Counselling and Continuity of Care, was involved in establishing a step down NICU1 … She and the Intensive Care Unit. usually counsels and supports mothers of sick neo- Nurses provide the majority of care to sick newborns in nates at a very stressful time and provides guidance health facilities; yet there is an acute shortage of neonatal during breastfeedings, handling and care, maintaining nurses internationally and particularly in resource-limited thermal control, and kangaroo care etc.” countries. The Council of Neonatal Nurses (COINN) and Anila’s colleagues describe her as an outstanding Save the Children have co-sponsored the International mentor, teacher and role model, who has helped many Neonatal Nursing Excellence Award since 2010. Nurse young nurses understand both the theory and prac- Anila Ali Bardai won the 2013 Winner of International tice of skilled nursing care. She leads research and Neonatal Nursing Excellence Award.

1 Intermediate or transitional unit.

76 CHAPTER 3

REFERENCES to entitled are they care the . Deliver

1. UN DESA. Sustainable Development Goals. United 14. Feldman R, Eidelman AI. Skin-to-skin contact nations Department of Economic and Social Affairs: (Kangaroo Care) accelerates autonomic and neuro- 2015 (https://sustainabledevelopment.un.org/topics/ behavioural maturation in preterm infants. Dev Med sustainabledevelopmentgoals, accessed 21 Child Neurol. 2003;45(4):274–81. February 2019). 15. Charpak N, Tessier R, Ruiz JG, Hernandez JT, Uriza 2. WHO. Standards for improving quality of maternal F, Villegas J, et al. Twenty-year follow-up of kanga- and newborn care in health facilities. Geneva: World roo mother care versus traditional care. Pediatrics. Health Organization; 2016. 2017;139(1): pii: e20162063. 3. Network for Improving Quality of Care for Maternal, 16. Vesel L, Bergh AM, Kerber KJ, Valsangkar B, Mazia Newborn and Child Health website (http://qualityof- G, Moxon SG, et al. Kangaroo mother care: a carenetwork.org/about, accessed 25 February 2019). multi-country analysis of health system bottlenecks 4. Sackett DL, Rosenberg WMC, Gray JAM, Haynes and potential solutions. BMC Pregnancy Childbirth. RB, Richardson WS. Evidence based medicine: what 2015;15 (Suppl 2):S5. it is and what it isn’t. BMJ. 1996;312(7023):71–2. 17. Charpak N, Ruiz-Pelaez JG, Figueroa de CZ, Charpak 5. WHO. Recommendations on newborn health: guide- Y. Kangaroo mother versus traditional care for lines approved by the WHO guidelines review com- newborn infants

77 78 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 38. 37. 36. 35. 34. 33. 32. 31 30. 29. 28. 27. 26. Pregnancy Childbirth,2015. 15 Suppl2:p.S7. system bottlenecks andpotential solutions.BMC sick analysis newborns: ofhealth amulti-country G,Deorari Gupta A, etal. Inpatient careofsmalland Moxon SG, Lawn JE,Dickson KE,Simen-Kapeu A, Organization; 2017. list); amended August 2017. Geneva: World Health WHO. WHO modellistofessentialmedicines(20th Delhi: UNICEF;2009. unitsandnewbornstabilisation careunits.New UNICEF. Toolkit for setting upspecialcareunits, now? JGlobHealth.2018;8(1):010702. borns: whatdowe needandwhatcanwe measure readiness for inpatientcareofsmallandsick new Moxon SG,Guenther T, Gabrysch S, etal.Service J. 2014;9(1): 23. deathin neonatal Australia: areport.IntBreastfeed Bredemeyer S, etal.Breastmilkdonationafter Carroll KE,Lenne BS, McEgan K, OpieG, Amir LH, child. QualHealthRes. 2017;27(14):2100–15. bonding withtheirextremely pretermanddying warmth toyour baby whenit’s toolate”: parents’ Abraham A, HendriksMJ. “You canonlygive (Suppl 1):S19–23. ly-centered integrative approach. JPerinatol. 2015;35 palliative andbereavement careintheNICU:afami- Kenner C,Press J, Ryan D. Recommendations for 2017;41(2):133–9. intensivecare inneonatal care.SeminPerinatol. Marc-Aurele palliative KL,EnglishNK.Primary review. ImplementSci.2018;13(1):20. in low- andmiddle-incomecountries:asystematic initiatives forsmallandsick hospitalised newborns Akhbari M,Moxon S, improvement etal.Quality Zaka N, Alexander EC,ManikamL,NormanICF, hqsscommission.org/, accessed25February 2019). healthsystemsquality intheSDGera(https://www. HQSS. LancetGlobalHealthCommissionon high tion/en/, accessed25February 2019). - who.int/servicedeliverysafety/quality-report/publica Development and World Bank; 2018. (http://www. Organisation for EconomicCo-operationand coverage. Geneva: World HealthOrganization, aglobalimperative forservices: universal health WHO, OECD, World Bank. Deliveringhealth quality Health. 2015;12: 46. newborn care:buildingacommonagenda.Reprod Sacks EandKinney MV. Respectful maternaland update. Pediatrics. 2016;137(2):e20154271. management ofproceduralpainintheneonate:an Anesthesiology andPain Medicine.Prevention and Committee onFetus andNewborn andSectionon

- 49. 48. 47. 46. 45. 44. 43. 42. 41. 40. 39. BMC MedEduc. 2015;15:117. emergencyresponse teamsinGuatemala. neonatal tion ofPRONTO simulationtrainingfor obstetric and Montoya-Rodriguez A, Fritz J, etal. A process evalua- Walker DM,HolmeF, ZelekST, Olvera-Garcia M, SimulHealthc.2016;11(1):1–9.ing. emergenciesand teamtrain- obstetric andneonatal PRONTO Mexico: asimulation-basedprogramin Zelek ST, Fahey JO, etal.Impactevaluation of Walker DM,CohenSR,Fritz J, Olvera-Garcia M, 2018;14 (Suppl1). tion andteamtrainingprogram.MaternalChildNutr. Kenya ofthePRONTO withimplementation simula- towards improved emergency obstetriccareinrural Cranmer J, KiboreM,etal.Measuringmovement Dettinger JC,KamauS, CalkinsK,CohenSR, and child health.CostEff Resour Alloc. 2017;15:12. Development Goalsrelatedtomaternal,newborn, ing innovations onachievement ofSustainable Batson A. Modelingthepotentialimpactofemerg- Herrick T, Harner-Jay C,Shaffer C,ZwislerG,DigreP, wardnatal inMalawi. PLoS One.2014;9(1):e86327. distressinaneo- system intreatmentofrespiratory S, LangH,etal.Efficacy ofalow-cost bubbleCPAP Kawaza K,Machen HE,Brown J, Mwanza Z,Iniguez 2013;8(1):e53622. assessment andinitialcasereports.PLoS One. sure system for low-resource settings: technical low-cost bubblecontinuouspositive pres- airway Brown J, Machen H,Kawaza K,etal. A high-value, Organization; 2016. newborn andchild health.Geneva: World Health foressential interventions reproductive, maternal, WHO. medicaldevices Interagencylistofpriority for Organization; 2018. vitro diagnostics(SAGE-IVD). Geneva: World Health grouponin report ofthefirststrategicadvisory WHO. Modellistofessentialinvitrodiagnostics: 2017;13(1):59. of asystematic literature review. GlobalHealth. within low- andmiddle-incomecountries:findings device andequipmentprocurementprioritization Manaseki-Holland S, Lilford R.Methodsfor medical Diaconu K,Chen YF, CumminsC,JimenezMoyao G, accessed 5March 2019). org/wp-content/uploads/2017/07/Oxygen_7.6.17.pdf, technical brief. 2017 (https://www.everypreemie. use for inpatientcareofnewborns –donoharm PreemieEvery –SCALE.Safe andeffective oxygen PerinatalNeonatal Med.2017;10(1):85–90. turity inIndonesia:incidenceandriskfactors. J Edy Siswanto J, SauerPJ. Retinopathy ofprema- CHAPTER 3 . Deliver the care they are entitled to entitled are they care the . Deliver 50. Edgcombe H, Paton C, English M. Enhancing emer- 64. EWEC. The global strategy for women’s, children’s gency care in low-income countries using mobile and adolescents’ health (2016–2030). New York: technology-based training tools. Arch Dis Child. Every Woman Every Child; 2015. 2016;101(12):1149–52. 65. WHO. Working for health and growth: investing 51. OpenSRP. Open Smart Register Platform. (http:// in the health workforce. Geneva: World Health smartregister.org/features-what-is-opensrp.html, Organization; 2016. accessed 25 February 2019). 66. Gupta N, Maliqi B, França A, Nyonator F, Pate MA, 52. Hignett S, Carayon P, Buckle P, Catchpole K. State of Sanders D, et al. Human resources for maternal, science: human factors and ergonomics in health- newborn and child health: from measurement and care. Ergonomics. 2013;56(10):1491–1503. planning to performance for improved health out- 53. Hamilton KES, Redshaw ME, Tarnow-Mordi W. comes. Hum Resour Health. 2011;9(1):16. Nurse staffing in relation to risk-adjusted mortality 67. WHO. Point of care continuous quality improve- in neonatal care. Arch Dis Child Fetal Neonatal Ed. ment (POCQI) (http://www.pocqi.org/, accessed 25 2007;92(2):F99–F103. February 2019). 54. BAPM. Service standards for hospitals providing 68. American Academy of Pediatrics and Survive neonatal care (3rd edition). London: the British and Thrive Global Development Alliance. Helping Association of Perinatal Medicine; 2010. babies survive essential care for every baby 55. Bliss. Save our special care babies; save our special- (app) (https://itunes.apple.com/us/app/hbseceb/ ist nurses: a Bliss report on cuts to frontline care for id1028948801?mt=8, accessed 25 February 2019.) vulnerable babies. London: Bliss; 2011. 69. WHO. Coaching guide for the first embrace: facilita- 56. DoH. Toolkit for high quality neonatal services. tor’s guide (Early Essential Newborn Care Module 2). London: Department of Health; 2009 (http://webar- 2016 (http://www.thefirstembrace.org/, accessed 25 chive.nationalarchives.gov.uk/20130123200735/http:// Feburary 2019). www.dh.gov.uk/en/publicationsandstatistics/publi- 70. CDC. Maternal and infant health. Centers for cations/publicationspolicyandguidance/dh_107845, Disease Control and Prevention (https://www. accessed 25 Feburary 2019). cdc.gov/reproductivehealth/maternalinfanthealth/, 57. Araújoa E, Maedaa A. How to recruit and retain accessed 25 February 2019). health workers in rural and remote areas in devel- 71. Yu YT, Hsieh WS, Hsu CH, Lin YJ, Lin CH, Hsieh oping countries: a guidance note. Washington DC: S, et al. Family-centered care improved neonatal World Bank; 2013. medical and neurobehavioral outcomes in preterm 58. WHO. Task shifting to tackle health worker shortages. infants: randomized controlled trial. Phys Ther. HIV/AIDS programme booklet (WHO/HSS/2007.03). 2017;97(12):1158–68. Geneva: World Health Organization; 2007. 72. O’Brien K, Robson K, Bracht M, Cruz M, Lui K, 59. WHO. Task sharing to improve access to family Alvaro R, et al. Effectiveness of family integrated planning/contraception. Summary brief (WHO/ care in neonatal intensive care units on infant and RHR/17.20). Geneva: World Health Organization; 2017. parent outcomes: a multicentre, multinational, clus- 60. Blencowe H, Kerac M, Molyneux E. Safety, effec- ter-randomised controlled trial. Lancet Child Adolesc tiveness and barriers to follow-up using an ‘early Health. 2018;2(4):245–54. discharge’ kangaroo care policy in a resource poor 73. WHO. Implementation guidance: protecting, promot- setting. J Trop Pediatr. 2009;55(4):244–8. ing and supporting breastfeeding in facilities pro- 61. Premji SS, Spence K, Kenner C. Call for neonatal viding maternity and newborn services; the revised nursing specialization in developing countries. MCN baby-friendly hospital initiative. Geneva: World Health Am J Matern Child Nurs. 2013;38(6):336–42; quiz Organization; 2018. 343–4. 74. Westrup B. Family-centered developmentally sup- 62. Hall D, Wilkinson A. Quality of care by neonatal portive care. NeoReviews. 2014;15(8):e325. nurse practitioners: a review of the Ashington 75. Vazquez V, Cong X. Parenting the NICU infant: experiment. Arch Dis Child Fetal Neonatal Ed. a meta-ethnographic synthesis. Int J Nurs Sci. 2005;90(3):F195–F200. 2014;1(3):281–90. 63. Freed GL, Dunham KM, Lamarand KE, Loveland- 76. Ottersen OP, Dasgupta J, Blouin C, Buss P, Cherry C, Martyn KK. Neonatal nurse practitioners: Chongsuvivatwong V, Frenk J, et al. The political distribution, roles and scope of practice. origins of health inequity: prospects for change. Pediatrics. 2010;126(5):856-60. Lancet. 2014;383(9917):630–67.

79 80 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 85. 84. 83. 82. 81. 80. 79. 78. 77. M, IslamS, etal.Determinantsofhardshipfinancing Tahsina T, Ali NB, SiddiqueMAB, Ahmed S, Rahman for technical reasonson 13 April 2010). Assembly, 24February 2010. A/RES/64/142 (reissued Resolution adoptedby theUnitedNationsGeneral UNGA. Guidelinesfor thealternative careofchildren. 2013.South-East Asia; World HealthOrganization,Regional Office for health challenge: situation analysis. New Delhi: WHO. Birthdefects inSouth-East Asia: apublic accessed 25February 2019). Collaborative for(https://public.vtoxford.org, Quality Vermont Oxford Network.Newborn Improvement accessed25 ties-country-profiles/, 2019).February org/resources/maternal-newborn-health-dispari- profiles. Published 2016country (https://data.unicef. UNICEF. Maternalandnewborn healthdisparities 1999;76(8):430–5. in institutional careinNairobi.East Afr MedJ. Growth anddevelopment ofabandonedbabies Otieno PA, NduatiRW, Musoke RN, Wasunna AO. 2018;16(1):72. study County, inNairobiCity Kenya. BMCMed. urbansetting:in ahighmortality across-sectional essential inpatientcarefor smallandsick newborns Aluvaala J, EnglishM,etal. Effective coverage of Murphy GAV, GatharaD, Mwachiro J, Abuya N, 2016;6(12):e012448. County,care inNairobiCity Kenya. BMJOpen. gaps inprovision ofinpatientnewborn andquality protocol forstudy anobservational toestimate the Abuya N,OumaP, etal.Nairobinewborn study: a Murphy GAV, GatharaD, Aluvaala J, Mwachiro J, 2017;2(4):e000472. to guidelocalpolicyinKenya. BMJGlobHealth. approach employing evidence andexpert consensus aniterative need for services: inpatientneonatal Shepperd S, Snow RW, etal.Estimatingthe Murphy GAV, Waters D, OumaPO, GatharaD, 93. 92. 91. 90. 89. 88. 87. 86. Network; 2017. managers. Version 3.0.Oxford: EmergencyNutrition guidance for emergencyreliefstaff andprogramme and young child feeding inemergencies.Operational Infant Feeding inEmergenciesCoreGroup.Infant Organization: Geneva; 2010. tive settings. healthinhumanitarian World Health in Crises.Inter-agency field manualonreproduc- Inter-agency Working GrouponReproductive Health Children; 2017. tings field guide.New York: UNICEFandSave the in Crisis.Newbornset- healthinhumanitarian Inter-agency Working GrouponReproductive Health February 2019). what-minimum-initial-service-package, accessed25 Published 2015 (https://www.unfpa.org/resources/ package? (MISP).UnitedNationsPopulation Fund. UNFPA. What istheminimuminitialservice analysis Popul datasets. HealthMetr. 2011;9:27. study: anddevelopment design,implementation, of verbalConsortium goldstandard autopsyvalidation Baqui A, etal.Population HealthMetricsResearch Murray CJ, Lopez AD, Black R, Ahuja R, Ali SM, 2011;11:477. developed province ofChina.BMCPublic Health. urban differences inapoorly mortality ofneonatal Yi B, Wu L,LiuH,Fang W, Hu Y, Wang Y. Rural- 2010;64(10):935–6. China, 1996-2006. Health. JEpidemiolCommunity urban differences ratein mortality inneonatal Mingrong L,etal. A study onrural- Yanping W, Lei M,LiD, ChunhuaH,XiaohongL, Environ HealthPrev Med.2011;16(4):209–16. epidemiological profileandhealthcarecoverage. disparities inchild withinChina1996–2004: mortality Feng XL,GuoS, Yang Q,XuL,ZhuJ, Guo Y. Regional of Bangladesh. PLoS ONE.2018;13(5):e0196237. seeking ofunderfive children inselected rural areas in copingwithoutofpocket payment for care

CHAPTER 4 © UNICEF / UNI98258 / Asselin

Ensure they thrive

81 82 SURVIVE AND THRIVE: Transforming care for every small and sick newborn • • • KEY MESSAGES outcomes and thusimprove economic productivity. building partnerships withfamilies canreduceadverse fromthebeginning, communities andcountries. Prioritizing developmentally supportive care,and I setting tohome. andintransitionfromhospital andthrive.can survive The roleofempowered parentsiskey inthehospital follow-up enablesthenewborn anditsfamily tobesupported. These newborns ordevelopmental delaysuccess. Earlydetectionofdisability throughroutine development. neonatal periodrequireregularfollow-up andnurturing caretooptimize Newborns whohavehadmajorcomplications atbirth andduringthe stimulation, andmaximuminformation-sharing betweenproviders andfamilies. by placingtheminanurturing, family-centred environment withrespect,minimal development. Developmentally supportive careimproves outcomesfor newborns severe infections such andsuboptimal asmeningitisresultinhighriskofdisability vulnerable before birthandintheearlyyears. Prematurity, birthcomplications,and interactionwiththeirenvironment. Thecare andpositive brainismost Every newbornandchild’s isthedirectresultofnurturing abilitytothrive nvestments inearly childhood developmentbenefit individuals, Parents andcaregivers arecrucial for short-and long-term CHAPTER 4 . Ensure they thrive they . Ensure © UNICEF / UN0205037 / Zehbrauskas

What does it mean to thrive?

An individual who thrives is able to develop his or her full developmental potential involves having an environment potential in the first years of life and beyond. As a holistic marked by nurturing care (3). The WHO, UNICEF and concept, this age span includes domains of child devel- World Bank Nurturing Care Framework contains five opment such as cognition, social and emotional inter- components: good health; adequate nutrition; responsive actions, and linguistic and motor skills. Various groups caregiving (early bonding, secure attachment, trust and working in early childhood development define and sensitive communication); safety and security (protection categorize domains differently. However, the goal is to from violence, abuse, neglect, harm and environmental describe developmental potential (i.e. what a child should pollution); and opportunities for early learning (4). know and be able to do) across an age span (1). Why is early childhood so significant? Broad consensus defines early childhood development The brain develops most rapidly in the first years of within two dimensions: the child (age and development), life, when neurons form new connections at upwards and the environment. The early childhood period begins of 1000 per second (5). The science underscores that at conception and ends at school entry, with develop- while genes provide the “blueprint” for the brain, it is mentally distinct phases within that age span. a child’s environment that shapes brain development. This occurs in a relatively short period of time, strongly Often referred to as “the first 1000 days”, the period influencing future capacity to learn, adapt to change, and from conception to 24 months is critical in the context develop psychological resilience. Nurturing care is what of preterm birth and neonatal illness, when biological the infant’s brain depends upon for healthy development, circumstances pose challenges to optimal development. making the role of parents, caregivers and families sig- Beyond 24 months, children continue to gain skills and nificant. This period of life is considered foundational for abilities throughout their entire early childhood. later health and well-being (4).

Thriving is a maturation process and the result of a pos- Infants and children who lack the components of nurtur- itive interaction between the child and its environment. ing care tend to have lowered cognitive, language, exec- Though developmental processes are similar across utive functioning and psychosocial outcomes. This can cultures, the rate at which children acquire culture-spe- lead to lower academic achievement in primary school cific skills may vary (2). An important part of a child’s and, ultimately, to more school dropouts (3). Longer-term

83 84 SURVIVE AND THRIVE: Transforming care for every small and sick newborn neurodevelopmental impairments (17) . InHICs,early erate-to-severe impairments and4.4%have mild globally each year, anestimated2.7%have mod- Among the13 millionpretermnewborns whosurvive promote development Effective interventionsto ence developmental delays, difficulties ordisabilities(16) . jaundicearealsomorelikelytions andneonatal toexperi - infections, neonatal survive intrapartum-related complica- with newborns ofnormalbirthweight. Newborns who academic difficulties andbehaviour problemscompared (14, 15). Inaddition,LBW newborns are atgreaterriskfor delays,tal learningdisabilitiesandbehaviour problems SGA newborns areatriskoflong-term neurodevelopmen- potent riskfactor for increasedvisualimpairment. provide blendedoxygen (i.e.lessthan100%); thisisa oxygen topretermnewborns, they arenotableto in thenewborn period. While many LMICsettings offer prematurity isassociatedwithhighexposure tooxygen ably higherinLMICs(12, 13). For example, retinopathy of (11) indicatethatthismay beconsider . Emergingdata at 10% inthosebornat lessthan26weeks’ gestation to 1–2%,severe visualimpairmenthasbeenmeasured impairment inallpretermnewborns inHICshasdropped outcomes (10). While ratesofsevere visionandhearing reporting gapsnotedfor visionandhearingimpairment focuses onneurodevelopmental outcomes,with The ofdevelopmental majority literature inLMICs small andsick newborns Developmental outcomesfor andearnings. and higherproductivity countries throughgreatersocialcohesionandstability not onlybenefit individuals,butalsocommunitiesand (9). Investments incareduringthesefirst years oflife some riskfactors andprotectearlybraindevelopment factors such asmaternalresponsive carecanoffset and academicachievement (7, 8).However, protective is associatedwithbehavioural outcomes for language altered brainarchitecture andreducedbrainvolume; this and exposure totoxic stresshasbeenassociatedwith implications for future generations(6).Earlylife adversity can affect anindividual’s geneticendowment andhave The latestevidence indicatesthatearlydeprivation engagement incrime. ings inadulthood,poorhealthoutcomesandincreased consequences canincludelower andearn- productivity - supportive care Fig. 4.1Elementsofdevelopmentally well-being. They includethe following: topromoting healthydependent but vital growth and The actionsassociated withthismodelaredisease-in- mize adverse consequencesfromhospitalization. can modifyittopromotehealthy development andmini- providers, parents and family affect theenvironment and and proprioceptive inputs).Interactionswithhealth-care temperature, touch, sound,light,vestibular smell,taste, environment (for example, orNICU)andthesensory ity includes thephysical surroundings (for example, thefacil - newborn isatthecentreofahealingenvironment that In adevelopmentally supportive caremodel, the for modifyingcaregiver 4.1)(19, behaviours (Fig. 20). reliable information andthattheircuesareuseful guides newborns provides came fromrecognitionthatobserving developmental outcomes.Much oftheearlyevidence between theway inwhich careisprovided andneuro comes, supportfamily-centred careandrecognize linkages the past40years tobecomemoreholistic,maximize out- carehasevolvedAs describedinChapter1,neonatal over childhood andadulthood(18). social-development outcomeswitheffects lastinginto haveinterventions beenshown toimprove cognitive and Adapted from:AltimieL,PhillipsR.Newborn&InfantNsgRev2016;16:230. and interacting Positioning Protecting

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E n I t nutrition

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CHAPTER 4 . Ensure they thrive they . Ensure • Optimize nutrition – Provide human milk; use are many models of family participation during inpatient cue-based, infant-guided feeding; involve parents care of the newborn, all share a common view that the in feedings to improve breastfeeding initiation and infant, the parents/primary caregivers, and health-care duration (21, 22). providers are a unit of care (30). • Safeguard sleep – Cluster care; assess and provide care to coincide with sleep and wake The newborn period is a sensitive time when parents cycles; and minimize noise and light (23). and their children should form healthy attachments to • Manage pain and stress – Minimize noise and one another. Establishing a lifelong bond between parent light; recognize signs of stress and pause inter- and child is critical for a child’s healthy development, vention when possible; and use positioning and as well as the emotional health of all family members. boundaries to provide containment (24–26). When an infant is born small or sick, however, separation • Position and interact – Maintain head in midline from its parents during hospitalization can disrupt this with limbs and trunk flexed and tucked; handle bonding process. Integrating parents into their newborn’s with slow, gentle movements; and provide care during hospitalization can maintain infant–parent support during transfers (27, 28). unity and help form a stable and secure attachment. • Protect skin – Maintain humidity during skin maturation; monitor susceptible skin/mucosal areas for Parents can make unique contributions to the care of breakdown; and promote skin-to-skin contact (29). their small and sick newborns. Under the supervision and mentorship of health-care staff they can provide Health-care providers and parents and families need to basic caregiving, such as feeding, bathing and changing have special understanding and skills to optimize nurtur- diapers. Maternal breastmilk offers significant advan- ing care for small and sick newborns. Nurses in particular tages for a newborn’s survival, growth and cognition. The must have the ability to interpret the behavioural cues consistent presence of parents provides familiar touch, of nonverbal infants and help parents develop the same sights, scents and sounds, as well as increased opportu- comprehension. The newborn’s complete dependency nities for vestibular and proprioceptive stimulation with means that nurses must act on their behalf to structure skin-to-skin care. the environment and incorporate the uniquely responsive and individualized care provided by parents. In order to By engaging families as part of the health-care team, accomplish this, nurses become guides and teachers of providers can bolster the confidence and competence the family as much as direct providers of care. In sum, of parents as they transition into their role as primary developmentally supportive, family-centred care can be regarded as the expression of respectful care for the small or sick newborn.

As noted in Chapter 1, lessons learned from studies on the adverse consequences of separating sick newborns from their families, carried out between the 1940s and 1970s in HICs, led to changes in hospital care of newborns; as a result, families were increasingly engaged as partners in care. Building reciprocal partnerships between families and providers is becoming a standard for health-care planning and delivery across the life course in HICs and a few LMICs. The core principles of family-centred care are: dignity and respect; information sharing; partici-

pation; and collaboration. While there © USAID

85 86 SURVIVE AND THRIVE: Transforming care for every small and sick newborn interact socially withcaregivers (37) . Such interventions touch, soundandsmell; tomanipulateobjects; andto and young child toexplore theenvironment usingsight, early learningopportunities thatencouragetheinfant ventions inthehome encouragedevelopment through opment for LBW infants inLMICs(36) . Stimulationinter benefits tocognitive, motorandsocial-emotional devel- haveearly stimulationinterventions shown short-term In additiontoproviding developmentally supportive care, At-home interventions show encouraginglongtermbenefits (see Box 4.1). until 2years ofage,like theoneinBogota, Colombia, lies attimeofdischarge andthrough follow-up services for theirchild (34).KMCprogramswithsupporttofami - confidence incaring healthandparental mental parental professional-led groups,improve thehomeenvironment, for parents,includingparent-led,peer-to-peer andhealth in parentsofpretermnewborns (34).Supportforums lead tohighersatisfaction withcareandreducedstress behavioural cuesandappropriateinteraction lem-solving, individualized educationprogrammesthatdiscussprob- stressful effects oftheNICUexperience. For example, fidence schedules andpreferred canbuildself-con- learningstyles (32). Discharge educationthataccommodatesparental that issensitive totheparents’ psychosocial needs This canbeaddressedthrougharobustdischarge plan should bemadetosupportcaregivingathome. small andsick newborns tothrive long-term,allefforts opment. To provide thesupportparentsneed,andfor and provide children withongoingopportunities for devel- treatment protocols,attend appointments,seekcare, withtheburdentocomply seem overwhelming caring for themafter discharge. Their responsibilities may frequently reportfeeling lessthanfullyconfidentabout Parents andcaregivers ofsmallandsick newborns parents andcaregivers Discharge andbeyond: empowering in New Hospital, Delhi,India. small andsick newborns intheDrRam ManoharLohia experience offamily engagementinthecareoftheir parenting abilities(31).Chapter1(Box 1.3) describesthe can foster greateremotionalcopingwhileimproving preventative care.Empowerment ofmothersandfathers the newborn’s follow-up planandhigherutilizationof often translatestobetter post-discharge compliancewith Familysion-making. membersgainhealthliteracy, which improves communicationwithproviders anddeci- caregivers. Parents learntoreadtheirbaby’s cues,which (32, 33).Effective educationalsomitigatesthe - (LBW, preterm,SGA) dividedtheinfants intotwo In India,arandomized study high-risknewborns of800 IQ scorescomparedwiththecontrolgroup(40,41). exposed hadsignificantlyhigher totheearlyintervention dren at6years ofagefoundbenefits; sustained children caregivers inthehome. A follow-up study ofthechil- in thestimulationandlearningopportunities provided by 24 monthsofage,aswell asnoteworthy improvements LBW infants comparedwithnormal-birth-weight infants at study reportedsignificantbenefits tothe developmentof by boosterhomevisitsfrom7–24monthsofage. The from birththroughthefirsteight weeks oflife, followed newborns were provided withweekly homesupportvisits weight infants, at24monthsofage(40).MothersLBW on developmental outcomes,comparedwithnormal-birth- effects for ofanearlystimulationintervention LBW infants In Jamaica, arandomized controlledtrialevaluated the improve newborn careathomearedescribedinBox 4.2. (38). Globalguidelinestosupportnationalefforts to and academicoutcomes,decreaseshospitalizations Responsive caregivingbenefits a child’s development on sensitive andresponsive caregivingandfeeding. through homevisitsoringroupsessions,withguidance may beimplementedwithparentsandfamily members had significantly larger cerebral volumes. the 20-year-olds who received KMC asinfants also ticipation offathers. Neuroimaging indicated that longer duration ofskin-to-skin contactandthepar now young adults. These effects were magnified by nalization andsocio-deviant conductamongthe absenteeism, hyperactivity, aggressiveness, exter enting, higherhourly wages, andreduced school These includedmore protective andnurturing par protective effects 20years after theintervention. have significant, long-lastingsocialandbehavioural The later study showed thatKMCcontinuedto and thequalityofmother–infant bonding(35). KMC onsurvival, neurodevelopment, breastfeeding during 1993 and1996 documented thebenefits of trials conducted 20years previously. The earlier study less than1000 gatbirth inrandomized controlled lowed upwith264participants whohadweighed Between 2012 and2014, astudy inColombiafol- 20 years on Box 4.1Kangaroo mother care: - - - CHAPTER 4 . Ensure they thrive they . Ensure

Box 4.2 Global guidelines for community practitioners

WHO and UNICEF have published global care guide- the community health-care provider to promote lines designed to help meet the needs of newborns, antenatal and newborn care. It also addresses infants and children who have limited access to special care considerations for LBW newborns. quality health services, or who live in conditions The additional packages, Caring for a Child’s Healthy of poverty, disadvantage and fragility. Community Growth and Development; Caring for the Sick Child health-care providers can use these guidelines to in the Community; and Care for Child Development support parents and caregivers during home visits. focus on the development of all children, or sick For the at-risk newborn, the primary package is children who are not necessarily small or preterm. Caring for the Newborn at Home. This package is These detail the health and nutritional needs of delivered during pregnancy, and for a week after young children, along with early stimulation and birth, through a series of five home visits. It helps responsive caregiving practices (39).

groups after discharge from the neonatal nursery. One Screening and monitoring group received standard care and the other received stimulation therapy for one year (42). Evaluation at 2 Although developmentally supportive care with in-home years of age showed higher development outcomes for interventions and support are proving successful, children in the early intervention group compared with progress has been hampered by inadequate screening the control group. and monitoring in LMICs to identify children at risk and evaluate service effectiveness. Countries need to provide Another study shows that home visits that provide ongoing screening and clinical monitoring of small and education and assistance positively impact parent-to-in- sick newborns to check if they are thriving. fant interactions (43). Analyses of 10 similar studies with preterm infants found that these programmes may lead Monitoring involves skilled observation by a knowledgeable to reduced parental stress levels, more positive maternal professional (e.g. monitoring for developmental milestones behaviour, and improved maternal–infant interactions at routine child health or immunization visits). Screening (34). Programmes with infant massage, games, skills and involves the use of standardized and validated screening more have also been associated with greater maternal tools for more formal evaluation of a specific aspect of health feelings of competence and reduced stress (34). In or development, such as anaemia screening, or use of a addition to home-support programmes, educational ser- standardized developmental–behavioural screening tool. vices for parents can mitigate maternal stress and may improve parenting (44). Early childhood development is rapid and dynamic, so assessments related to pre-, peri- and neonatal traumas Early interventions have also been effective in rural dis- or injuries should include investigation through the early advantaged settings. A three-country randomized trial in development stages, and in some cases into school India, Pakistan and Zambia investigated the effects of an age. While severe motor and sensory or perceptual early intervention programme on infants who had been differences may be detectable in infancy, mild-to-mod- resuscitated at birth compared with infants who did not erate motor disability may not be obvious before 1 to require resuscitation (45). Trained lay individuals visited 2 years of age. Language delays become more appar- members of the intervention group at home twice a ent between 18 and 30 months. Socioemotional and week over the first three years of life to provide early executive functioning differences may not be detectable stimulation and to guide parent–child interactions. The until school age. Screening and monitoring in infancy treatment significantly improved the children’s cognitive and beyond provides valuable information for the child’s and psychomotor outcomes. A larger body of research care, for research and programme evaluation, and for over the last two decades shows consistent benefits for the larger community or population. disadvantaged children in LMICs (particularly for those at risk of malnutrition) from early stimulation and care- Screening for parental distress giver skills development (35, 46, 47). Further research is Emotional distress experienced at the NICU can disrupt required to understand the long-term benefits. the infant–parent bonding process and lessen a parent’s

87 sense of self-confidence when it comes to caring for identify those parents who may be anxious, depressed their child (48). Mothers are more at risk for anxiety and traumatized. Staff should be trained to recognize and depression, which can have long-term negative families at highest risk, screen them and link them to consequences on the child’s behavioural and cognitive appropriate care and support (32). development (44, 49). Annex 2 provides an overview of tools for screening and In humanitarian crises, stress and distress are amplified. monitoring early childhood development at the individual, For newborns to thrive after discharge, it is essential to programme and population levels.

Transforming care for every small and sick newborn A PARENT’S STORY

A Mexican mother fights for her twins and goes on to support other parents internationally

Early on in Ilein Bolaños with nephrotic syndrome, a kidney disorder which has Gonzalez’s fraternal twin since resolved. Alonso has faced some issues common in SURVIVE AND THRIVE: AND SURVIVE pregnancy, she was diag- children born preterm, including kidney problems as well nosed with a subchorionic as difficulties eating, sleeping, and focusing. Both twins haematoma. Ilein spent have also struggled with sensory processing. the next two months on “There was a lack of follow-up care,” Ilein says about modified bed rest until the her experience navigating the health system in Mexico complication resolved. City. She was on her own to obtain the developmental Ilein holds her twins Alonso and Camila in the hospital At 32 weeks’ gestation, specialist services her children needed to thrive. But Ilein felt some mild Ilein’s professional experience stomach pain. When she went to her doctor’s office, her as a lawyer prepared her to provider informed her that she was 8 cm dilated. step into her role as her twins’ best advocate. “I am tough and “I hadn’t been feeling the contractions,” Ilein recalled. I always fight,” she said. “In less than 40 minutes my babies were born via caesarean section.” Despite her strengths, Ilein “felt a lack of emotional Ilein only saw her babies for a few seconds before the support when my kids were doctors whisked them away to the neonatal care unit. young.” So Ilein started a “It was very strange,” she remembered. “It was 36 parent support group at her hours until I could see them again. I told the staff to twins’ hospital. Later, she please take a picture for me. That is how I met my joined forces with another twins.” The photograph helped prepare Ilein for what affected mother to build a was in store. Her son Alonso was 1.5 kg, and her daugh- non-profit organization known ter Camila was 1.6 kg. as Con Amor Vencerás (“With At the neonatal care unit, the twins received photother- Love, You Will Win”). Con Amor apy, learned to eat and breathe, and gained weight. IIein Vencerás focuses on improving policies and increas- struggled with the unnatural separation. “The visiting ing emotional support for families of small and sick hours for the neonatal care unit were from 10:00 in the newborns. It has grown to include representatives in 22 morning until noon and then from 5:00 to 8:00 in the cities in Mexico and 5 countries in Latin America. It has evening,” she recalled. “It was terrible to be away from also created a manual for parents to develop their own them.” Despite their relatively brief hospitalization of 24 local support groups. Currently, the organization hosts days, the family experienced many more challenges after one of the first and largest prematurity-focused online their discharge. At the age of 2, Camila was diagnosed support groups in Latin America.

88 CHAPTER 4

REFERENCES thrive they . Ensure

1. Britto PR, Engle PL, Super CM, editors. Handbook of 13. Lissauer T, Duke T, Mellor K, Molyneux L. Nasal CPAP early childhood development research and its impact for neonatal respiratory support in low and middle-in- on global policy. Oxford University Press, USA; 2013. come countries. Arch Dis Child Fetal Neonatal Ed. 2. McCoy DC, Black MM, Daelmans B, Dua T. 2017;102(3):F194-F196. Measuring development in children from birth to 14. Garfield CF, Karbownik K, Murthy K, Falciglia G, age 3 at population level. Early Childhood Matters. Guryan J, Figlio DN, et al. Educational perfor- 2016 (https://bernardvanleer.org/ecm-article/2016/ mance of children born prematurely. JAMA Pediatr. measuring-development-children-birth-age-3-popula- 2017;171(8):764–70. tion-level/, accessed 28 February 2019). 15. Lawn JE, Blencowe H, Oza S, You D, Lee AC, 3. Black MM, Walker SP, Fernald LCH, Andersen CT, Waiswa P, et al. Every newborn: progress, pri- DiGirolamo AM, Lu C, et al. Early childhood develop- orities, and potential beyond survival. Lancet. ment coming of age: science through the life course. 2014;384(9938):189–205. Lancet. 2017;389(10064):77–90. 16. Vaivada T, Gaffey MF, Bhutta ZA. Promoting early 4. WHO, UNICEF, World Bank Group. Nurturing care child development with interventions in health and for early childhood development: a framework for nutrition: a systematic review. Pediatrics. 2017;140(2) helping children survive and thrive to transform pii:e20164308. health and human potential. Geneva: World Health 17. Joy EL, Hannah B, Shefali O, et al. Every newborn: Organization; 2018. progress, priorities, and potential beyond survival. 5. National Scientific Council on the Developing Lancet. 2014;384(9938):189–205. Child. Young children develop in an environment 18. Moster D, Lie RT, Markestad T. Long-term medical of relationships: working paper no. 1. Cambridge, and social consequences of preterm birth. N Engl J MA: Center on the Developing Child at Harvard Med. 2008;359(3):262–73. University; 2004. 19. Als H. Toward a synactive theory of development: 6. Shonkoff JP, Garner AS, Siegel BS, et al. The lifelong promise for the assessment and support of infant effects of early childhood adversity and toxic stress. individuality. Infant Ment Health J. 1982;3(4):229–43. Pediatrics. 2012;129(1):e246. 20. Als H, Tronick E, Lester BM, Brazelton TB. The Brazelton 7. Hair NL, Hanson JL, Wolfe BL, Pollak SD. Association neonatal behavioral assessment scale (BNBAS). J of child poverty, brain development, and academic Abnorm Child Psychol. 1977;5(3):215–31. achievement. JAMA Pediatr. 2015;169(9):822–9. 21. Belfort MB, Anderson PJ, Nowak VA, Lee KJ, 8. Hodel AS, Hunt RH, Cowell RA, Van Den Heuvel SE, Molesworth C, Thompson DK, et al. Breast milk Gunnar MR, Thomas KM. Duration of early adversity feeding, brain development, and neurocognitive and structural brain development in post-institutional- outcomes: a 7-year longitudinal study in infants ized adolescents. Neuroimage. 2015;105:112–19. born at less than 30 weeks’ gestation. J Pediatr. 9. Luby JL. Poverty’s most insidious damage: the 2016;177:133–9.e131. developing brain. JAMA Pediatr. 2015;169(9):810–11. 22. Manzoni P, Stolfi I, Pedicino R, Vagnarelli F, Mosca F, 10. Milner KM, Neal EFG, Roberts G, Steer AC, Duke T. Pugni L, et al. Human milk feeding prevents retinop- Long-term neurodevelopmental outcome in high-risk athy of prematurity (ROP) in preterm VLBW neo- newborns in resource-limited settings: a systematic nates. Early Hum Dev. 2013;89 (Suppl 1):S64–68. review of the literature. Paediatr Int Child Health. 23. Graven S, Browne J. Sleep and brain development: 2015;35(3):227–42. the critical role of sleep in fetal and early neonatal 11. Larroque B, Ancel PY, Marret S, Marchand L, Andre brain development: a systematic review. NAINR. M, Arnaud C, et al. Neurodevelopmental disabilities 2008;8(4):173–9· and special care of 5-year-old children born before 33 24. Bergman NJ. The neuroscience of birth – and the case weeks of gestation (the EPIPAGE study): a longitudi- for zero separation. Curationis. 2014;37(2): e1–e4. nal cohort study. Lancet. 2008;371(9615):813–20. 25. Gudsnuk KM, Champagne FA. Epigenetic effects 12. Thukral A, Sankar MJ, Chandrasekaran A, Agarwal of early developmental experiences. Clin Perinatol. R, Paul VK. Efficacy and safety of CPAP in low- and 2011;38(4):703–17. middle-income countries. J Perinatol. 2016;36(Suppl 26. Benoit B, Campbell-Yeo M, Johnston C, Latimer M, 1):S21–S28. Caddell K, Orr T. Staff nurse utilization of kangaroo

89 90 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 37. 36. 35. 34. 33. 32. 31. 30. 29. 28. 27.

Child Health.2016:241. opment. Reproductive, Maternal,Newborn, and Aboud FE, Yousafzai AK. Very earlychildhood devel- countries. Lancet.2011;378(9799):1339–53. for young children inlow-income and middle-income inequalities andimproving developmental outcomes O’Gara C, Yousafzai A, etal.Strategiesfor reducing Engle PL,Fernald LCH, Alderman H,Behrman J, 2017;139(1): pii:e20162063. roo mothercareversus traditionalcare.Pediatrics. F, Villegas J, etal. Twenty-year follow-up ofkanga- Charpak N, Tessier R,Ruiz JG,HernandezJT, Uriza BMJ Open.2011;1(1):e000023. providing information toparentsofpreterminfants. ventions for communicatingwith,supportingand L. A systematic mappingreview ofeffective inter Brett J, Staniszewska S, Newburn M,Jones N, Taylor toolkit/index.html, accessed28February 2019). www.ahrq.gov/professionals/systems/hospital/nicu_ for HealthcareResearch (AHRQ)(http:// andQuality (Content lastreviewed December2013). Agency AHRQ. Transitioning newborns fromNICUtohome. support. JPerinatol. 2015;35 (Suppl1):S24–28. and beyond: recommendationsfor parentpsychosocial Purdy IB, CraigJW, ZeanahP. NICUdischarge planning 2012;129(2):394–404. centered careandthepediatrician’s role.Pediatrics. Patient-Family-Centered Care.Patient- andfamily- Committee CareandInstitute onHospital for 2015;35(Suppl 1):S5–S8. in developmental careoftheNICUbaby. JPerinatol. Browne J. Recommendations for involving thefamily Craig JW, Glick C,PhillipsR,HallSL,SmithJ, face. NeoReviews. 2001;2(12):e292. Hoath SB. The skinasaneurodevelopmental inter of newborns andinfants. 2010;285–312. iologic, andsleepimplications.Developmental care Hunter J. Therapeutic positioning:neuromotor, phys- Rev. 2009;7(7):224–59. ical development: asystematic review. JBILibrSyst Positioning ofpreterminfants for optimalphysiolog- Picheansathian W, Woragidpoonpol P, Baosoung C. infants. Adv Care.2016;16(3):229–38. Neonatal for care asanintervention proceduralpaininpreterm

- - 49. 48. 47. 46. 45. 44. 43. 42. 41. 40. 39. 38.

corrected age. Acta Paediatr. 2011;100(5):700–4. behavioural outcomesof VLBW children at24months predictscognitive A. Earlymaternalanxiety and Zelkowitz P, NaS, Wang T, Bardin C,Papageorgiou Nurs.2012;26(1):81-7;Neonatal quiz88–9. to homefor parentsofpreterminfants. JPerinat Boykova M,Kenner C. Transition fromhospital 2017;389(10064):91–102. promoting earlychildhood development. Lancet. Matthews SG, Vaivada T, etal.Nurturing care: Britto PR,Lye SJ, Proulx K, Yousafzai AK, 2015;66(1):433–57. opment inearlychildhood. Annu Rev Psychol. Aboud FE, Yousafzai AK. Global healthanddevel- 2013;162(4):712.e713. birth asphyxia indeveloping countries.JPediatr. onoutcomesinchildren intervention opmental after JL, BiasiniFJ, etal.Randomized trialofearlydevel- Carlo WA, GoudarSS, Pasha O, ChombaE, Wallander a concernfor pediatricians.Pediatrics. 1987;79(1):110. Zuckerman BS, Beardslee WR. Maternaldepression: review. Pediatrics. 2013;132(3):502–16. and outcomesofpreterminfants: asystematic Goyal NK, Teeters A, Ammerman RT. Homevisiting controlled trial.IndianPediatr. (Suppl:s20). 2009;46 early stimulationamongatriskbabies–arandomized S, Padma K.Effect ofchild development centremodel Nair MKC,PhilipE,Jeyaseelan L,GeorgeB, Mathews 2010;52(7):e154. weight Jamaican children. Dev MedChildNeurol. and behaviour at6years inacohortofterm,low-birth- SM. The effect ofpsychosocial stimulationoncognition Walker SP, ChangSM, Younger N,Grantham-McGregor Nutr. 2004;134(6):1417. the development oftermlow-birth-weight infants. J McGregor SM.Psychosocial improves intervention Walker SP, ChangSM,Powell CA,Grantham- newborn-at-home/en/, accessed28February 2019). maternal_child_adolescent/documents/caring-for-the- World HealthOrganization;2015 (http://www.who.int/ WHO. Caringfor thenewborn athome.Geneva: Bull World HealthOrgan.2006;84(12):991–8. Responsive andoutcomes. parenting:interventions Eshel N,DaelmansB, MelloMCd,Martines J. CHAPTER 5. Use data for action 91 CHAPTER 5 CHAPTER

Use data for action for data Use © Amy Fowler / USAID / Fowler Amy © 92 SURVIVE AND THRIVE: Transforming care for every small and sick newborn • • • KEY MESSAGES outcomes for at-risknewborns. as well asthe experience ofcare,and how toassessand follow-up long-term interventions, especially tomeasure coverage ofhospital-based andquality for targets theSurvive, Thrive and Transform agenda,ambitious change isneeded, and sick newbornsare caredfor(transform). To accelerateprogress towards andchange ensurehealthandwell-being (thrive); (survive); howsmall Gaps inhigh-prioritydatamustbeclosed toendpreventabledeaths health managementinformation systems. These, canbecollectedthrough increasinglyavailable andotherdata, routine thus providing opportunities for registeringthe birthsandrecordingbirthweights. and availability. Today, moreinfants areborninfacilities thaninprevious years, There aremany opportunities toimprove birth andnewborndataquality ofcare. and response,canimprovequality accountability Regular deathaudits,linkedsurveillance perinatal tomaternaland information systems aswell asintermittent healthassessmentsandsurveys. progress towardstargets. mortality These fromroutine includefacilitybirthdata thatcanbeusednow hasdata toaccelerate varies,and quality buteverycountry quantity action.Data Every countryhasdatathatcanbeusednowtodrive CHAPTER 5 . Use data for action for data . Use © 2018 Karen Kasmauski

arlier chapters presented a range of data and Which data are needed by case studies to underscore a key premise: health system level? those born small and sick require special care to survive and thrive. While the available data reveal Across the health system, information about small and Einequities in access to care and quality of care, there are sick newborns is needed not only by health-care provid- many gaps in knowledge. To date, there are no adequate ers, programme managers and policy-makers, but also by metrics for small and sick newborns and the types of parents, families, caregivers and communities. Targeted care they need or receive – in the first few weeks, in the reporting is necessary to avoid the data-rich, informa- subsequent months and years, and in all settings. tion-poor (DRIP) scenario – a system overwhelmed by too many indicators that do not accurately or reliably give Unless countries can track coverage of high-quality the information needed (1). The routine data needed at care for small and sick newborns, the ambitious targets all health system levels for small and sick newborns is for 2030 for newborn survival will not be met. Beyond shown in Fig. 5.1 (2). survival data, it is critical to measure follow-up care and early interventions. New metrics relating to quality and Parents, families and communities are positioned safety of inpatient care are needed to inform strategies at the base of the pyramid to denote a family-centred for improving outcomes for small and sick newborns, and approach to both care and measurement (as shown in to guide decision-making around achieving UHC. Fig 5.1). The death or illness of a newborn is a major family crisis; good communication and the sharing of More specific metrics will inform how UHC targets meaningful information between families and health-care can be met, by linking the data of the Every Newborn providers is crucial for high-quality care (3). Action Plan and Global Strategy for Women’s, Children’s and Adolescents’ Health with data on progress towards Individual-level data about a newborn’s health and the SDGs. This chapter looks closely at current needs, treatment inform day-to-day clinical decision-making in opportunities and priorities to improve the availability and essential, special and intensive care. Health-care pro- quality of data. viders with neonatal skills collect detailed information in

93 94 SURVIVE AND THRIVE: Transforming care for every small and sick newborn adapted for smallandsick newborns Fig. 5.1 The routine dataneedsofdifferent healthsystemlevels, Adapted from:HeywoodandRohde, 2000. indicators coverage, process Includes impact, and UHC (Core) totrackSDGs International indicators health system Level of Individual clientcare Facility management District management National trackingdata

FEEDBACK LOOPS BETWEEN LEVELS Immediate breastfeedingrate Postnatal care–newborn Low birthweightrate Neonatal mortalityrate of care decisions, clientexperience Details forclinical process data Quality improvement equipment/drugs service readinessindicators, Coverage, moredetailed resources, equipment/drugs readiness indicators,human Impact, coverage,service sick newborns speci c forsmalland Examples ofindicators Family andcommunity Individual Level Subnational National Facility Global CORE CORE CORE CORE CORE Human resourcesindicators Service readinessindicators Perinatal DeathSurveillanceandResponse) indicators Perinatal auditandsurveillance(Maternal and Respectful careindicators Quality ofcareindicators Mothersreceivedantenatalcorticosteroids Resuscitated Givenkangaroomothercare T Coverage foreligiblenewborns: Disabilityratesafterneonatalconditions Neonatalmorbidityrate Smallforgestationalagerate Impact: Pretermbirthrate determine reportinglevel Example indicatorsforcountriesto reated forinfection

CHAPTER 5 . Use data for action for data . Use individual patient records as they partner with parents include: Why are these data needed? Which data can be and families in caregiving. This information includes used now? What data are needed? an assessment of the family’s confidence to transition home safely, and to communicate with primary health- Measuring impact care services. Measuring the family’s experience of care Why are these data needed? Impact indicators is key to a family-centred care approach. measure results and enable the tracking of progress towards national and global goals and equity gaps. As described in Fig. 5.1, some individual data should be aggregated and shared at other levels of the health Which data can be used now? Global NMR tracking still system. Countries should decide which indicators to depends typically on nationally representative house- report and use at the facility, district/subnational hold surveys, often stratified by equity metrics (e.g. and national levels. A few specific common (or core) urban/rural, socioeconomic, geography and education). standardized indicators for small and sick newborns Routinely disaggregating NMR by sex, as with under-5 need to be tracked at the national and global levels mortality, could better track gender equity for small and for accountability purposes and to monitor progress sick newborns. Since the proportion of births in health towards the SDG targets. Core indicators rise from the facilities now exceeds 75%, birth weights are increas- community and individual levels as shown in the middle ingly available and could be used to report LBW rates. of the pyramid. Estimates suggest that more than 80% of neonatal deaths are LBW; tracking NMR by birth weight groups Most of the 2.5 million newborns who die globally would help countries to understand and respond to each year are small or sick, or both; neonatal mortality mortality patterns. represents nearly half of all under-5 deaths (4). Yet few specific core indicators for small and sick newborns are What data are needed? Additional impact indicators currently tracked at the national and global levels. Of the more specific to small and sick newborns are also 100 WHO core health indicators, only one risk factor – needed. It is important to know the gestational age low-birth-weight – relates to small and sick newborns (5). of each newborn to assess how preterm and growth Three additional indicators are tracked for all newborns: restricted or SGA affects them; to guide individual clinical NMR; postpartum care coverage for newborns; and early care; and to identify at-risk populations. Innovation is initiation of breastfeeding. Policy- makers who intend to invest in care for small and sick newborns need reliable data for specific indicators in order to track progress towards targets.

What types of data need to be captured? Data can inform planning, spark prompt action and identify equity gaps (6). The Every Newborn Action Plan strategic objectives include using a measurement improvement roadmap and milestones to transform metrics and use of data (7–9). Core and additional indicators, selected through a multicountry consultation process, include impact, coverage and quality of care with health system input (Table 5.1) (10–12).

Indicators most relevant to small and sick newborns (Table 5.1) are

discussed below. Relevant questions © Allan Gichigi / MCSP

95 96 SURVIVE AND THRIVE: Transforming care for every small and sick newborn * alsoacoreindicatorfor theGlobalStrategyfor Women’s, Children’s and Adolescents’ Health(2016–2030) (13). is urgentlyneeded totrack at-risknewborns, including whom, andhow often itis needed. A simplified system and toclarifywhatfollow-up careiseffective, andfor to defineappropriateindicators for thesenewborns nutritional anddevelopmental risk.Research isrequired aftersurvivors inpatientcare,whoremainatincreased The relatestosmallandsick greatestgapin impactdata tional assessmentsatbirth. - caesarean sectionpreterm)andtosimplifyclinicalgesta ment duringpregnancy(toavoid nonmedically indicated required toimprove assess- theaccuracyofgestational t Key: Table 5.1Every Newborn Action Plan:coreandadditionalindicators BMC Pregnancy andChildbirth(2015) (9). Adapted from:WHO andUNICEF, Newborn Every Action Plan(2014) (7),Masonetal.,The (2014) Lancet (8),Moxon etal., Indicators tobedisaggregatedby metrics such equity asurban/rural, socioeconomic, geography andeducation. alsoanindicatorfor theSDGs(14). data lacking consistency of but quantityand Definitions clear– Current status systems use information management testing for health and feasibility validation and requiring definitions, Gaps in care are lacking content of but dataon definitions clear Contact point ( ( ( ( ■ black text) bold black text ) grey text)

background) =notcurrently routinelytracked atgloballevel. =indicatorsrelevant for allnewborns; =indicatorsspecificallyrelevant tosmallandsick newborns; =indicatorsspecificallyrelevant to smallandsick newborns andrequiringadditional testingtoinform consistentmeasurement; Impact Type ofindicators Input: counting for qualityofcare delivery packages Input: service and extra care complications Coverage: newborns mothers and care for all Coverage:

1. Maternalmortality ratio* Core indicators Birth registration with measurable norms andstandards Quality ofcare initiatives Care ofsmallandsick newborns Emergency obstetriccare 10. Antenatal corticosteroid use 9. 8. Kangaroo mothercare 7. Neonatalresuscitation 6. 5. 3. Neonatalmortality rate* 2. Stillbirth rate* 4. Skilledattendant atbirth* infections Treatment ofserious neonatal early breastfeeding) Essential newborncare(traceris newborns* and Early postnatalcareformothers t

health outcomes. health outcomes. ventions, countriescanmoreeffectively plan toimprove high-impact, evidence-based andcost-effective inter who receive thecare they need.Bytracking coverage of measure theproportionofsmall andsick newborns Why are thesedataneeded?Coverage indicators Measuring coverage andqualityof care ment outcomes(Box 5.1). toavoidintervention suboptimalearlychildhood develop- of retinopathy ofprematurity; andthoseneedingearly jaundice;thoseatrisk those whoaretreatedfor neonatal

t t t Additional indicators Chlorhexidine cord cleansing Caesarean sectionrate to sixmonths* breastfeedingup Exclusive Antenatal care* Disability after neonatalconditions Neonatal mortality rate Small forgestationalage Preterm birth rate Low birth weightrate Intrapartum stillbirth rate Death registration,causeofdeath

- CHAPTER 5 . Use data for action for data . Use

Box 5.1 Real-time monitoring of newborn care units in India – measuring for accountability and action

India has 25 million births annually and accounts for diagnosis and treatment analysis (including anti nearly 25% of global newborn deaths. Each year, biotic and oxygen usage, outcomes by weight and 590 000 newborns die, which is the highest country maturity, and causes of death). The analysed data total. To address this, India has focused on improving can be accessed online. The system was piloted in access to institutional delivery and strengthening the state of Madhya Pradesh in 2012 and 2013 and facility-based newborn care. Special newborn care has been adopted by the government for use in all units (SNCUs) have been set up at the district level SNCUs. The National Health Mission has budgeted and newborn stabilization units at the block level. for computers with internet connectivity and This links with home visits and referrals by accredited data operators. Follow-up occurs for one year, social health activist workers, who focus on both with reminder messages sent to families and com- home births and follow-up of newborns delivered in munity workers. hospitals and those discharged from SNCUs. Currently, Currently scaled-up in 28 of 29 states – covering there are 752 SNCUs treating 1 million newborns each 87% of the SNCUs and with 2.7 million newborns year. These efforts contributed to a 22.5% reduction in enrolled – this is now one of the largest online neonatal mortality between 2011 and 2016. databases of small and sick newborns globally. However, in the absence of a credible data record- The system is helping the SNCU staff, programme ing and monitoring system for SNCUs, there were managers and policy-makers to take targeted and challenges in collating and analysing data, tracking timely action. It has helped generate evidence to performance, ensuring accountability and initiating guide policy decisions, initiate actions related to corrective action. In addition, there was no system human resources, increase investments on improve- for long-term follow-up of these newborns after ment of labour room care, reduce antibiotics usage, discharge from the SNCUs, resulting in suboptimal target supportive supervision efforts, and establish outcomes for survival, growth and development. follow-up systems. To address these gaps, UNICEF supported the During 2018, the database will expand to cover National Health Mission to develop a real-time all SNCUs in India, with simultaneous expansion monitoring system to assess SNCU performance and into the private sector. The quality of data will be track newborns post-discharge. This system records strengthened and promoted for regular use. As vital information related to antenatal care and care facility-based newborn care increases globally, this in the labour room, SNCU care and post-discharge example offers a scalable solution for other countries follow-up care. It provides real-time data for more with similar challenges and serves as a model for than 250 parameters, such as admission profile, final global or regional neonatal registry systems.

Care that is high-quality is measured to be effective, household surveys, although quality of data varies. It safe, centred on the patient’s needs and delivered in a is more complex to measure content of care through timely fashion. This must be applied to all newborns, household surveys. Facility-based intervention coverage wherever they are born in the world. As more newborns (using count data and validated denominators) can be receive special and intensive care, indicators should collected via a routine HMIS. Measurement and valida- capture the type and quality of care received in order to tion research are underway in three LMIC settings for guide programmatic efforts to improve services. coverage indicators regarding high-impact interventions that include neonatal resuscitation, KMC, treatment of Which data can be used now? Coverage of care that serious neonatal infections and appropriate use of ante- prevents and treats complications faced by small and natal corticosteroids (15). A consensus-based approach sick newborns includes skilled attendance at birth, imme- can be highly effective in developing monitoring frame- diate postnatal care and early initiation of breastfeeding. works for indicators, as was demonstrated recently in These are often tracked by nationally representative Malawi (Box 5.2).

97 98 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Why are these dataneeded? Assessments ofthe Measuring parent and communityengagement integrated metricstopromote respectfulcarefor both. separationofparentsandnewborns, with unnecessary research. indicatorsshouldalsomeasureany Quality definitionswith require standard validation and feasibility indicators needrefining for smallandsick newborns and quality-oriented 3.1)(3).Theseconstitutes (Fig. quality and experience ofcare,withcleardefinitions of what Framework hastwointerlinked dimensionsofprovision What dataare needed? The WHO ofCare Quality Malawi’s experience withkangaroomother care.Lilongwe, Malawi: Save theChildren;2018. Source: Save theChildrenMalawi. Improving for availability ofroutinedata newborns: andquality timeliness remain achallenge. In2016, anestimated compared with51%in2014. Data completeness and rates ofreporting: 87%ofhospitalsreported in2016 National training andorientation ledto improved discharge; (5)Left against medicaladvice. Survival to facility discharge; (4) Deathbefore facility initiation rate; (2)KMCreferral completionrate; (3) (DHIS2). The five core KMC indicators are: (1)KMC into Malawi’s District HealthInformation System 2 elements andfive core indicators were incorporated Improved dataquality anduse:EightKMCdata • • • • phases involve: friendly registration andreporting form. The four system for facility-based KMC, withasimple, user- process to develop anationalroutine reporting support from Save theChildren, began afour-phase Central Monitoring andEvaluation Department, with the Malawi Reproductive HealthDirectorate and data have beenlimited andofpoorquality. In2014, of standard indicators, registers andreports, routine KMC. However, intheabsenceofanationalsystem Since 2005, Malawi hasscaledupfacility-based availability, quality anduseofroutine data Box 5.2Kangaroo mothercareinMalawi: improving and Evaluation Department inmid-2015. package approved by theCentral Monitoring Phase 4: finalized forms using feedback, with across Malawi Phase 3: atwo-month pilottesting in 21facilities linked to amonthlyreport form, with instructions Phase 2: redesigning astandard pre-coded register elements reduced from 32to 8 Phase 1: prioritizing five core indicators, withdata of smallandsick newborns, yet few arestandardized and engagementinthe care measure parent andcommunity Which datacanbe usednow? There are toolsto lines canimprove of family-centred thequality care(16) . ment usingevidence-based, family-centred careguide- guides theirgrowth ascaregivers. Programme assess- venient toparents,aspartofaprocessthatsupports and Assessments placeata time andplacecon- shouldtake central toaneffective approach tofamily-centred care. desired roleduringtheirnewborn’s inpatientcare,are knowledge, attitudes andbeliefsofparents,their • • • • • • This effort ledto several key lessons: and thecoverage estimates, varied widelyby district. newborns. The numberofcasesinitiated onKMC, live births) and44%ofreported preterm orLBW eligible nationwide (calculated as10% ofexpected ing approximately 21%oftheanticipated number 15 316newborns were initiated onKMC, represent- trict-specific factors when assessingperformance. Consider levels ofpartner support andotherdis- between different sources). denominator data, ordiscrepancies invalues igate (e.g. poorinternet, lack ofpopulation-based require resource poolingandjointadvocacy to mit- system-wide barriers to dataqualityandusewhich Collaborate across partners to address common, support atnational, district andfacility levels. Plan andbudget for sustainedhumanresources staff indesignandtesting oftools. Focus onendusersby engaging facility andHMIS most important to track. guidance to helpdetermine which indicators are of datacollectionandreporting. Consultglobal routine reporting inorder to minimize theburden Prioritize indicators anddataelementssuitablefor roll-out. and instilledbuy-in throughout development and (which manages theHMIS)facilitated coordination and Central Monitoring andEvaluation Department throughout. The Reproductive HealthDirectorate Engage MinistryofHealthleadershipearly and CHAPTER 5 . Use data for action for data . Use validated. Family-centred care tools for neonatal units also Which data can be used now? Currently, logistics exist, with options specific to LMICs(17–19) . Such tools management systems and HMIS collect relatively few use staff and family surveys and benchmarking reports data on service-readiness for small and sick newborns (between hospitals, regions and countries) to assess pro- in LMICs (9). As a result, many countries depend on vider perceptions and parent satisfaction at discharge (20, periodic health-facility assessments as a key source of 21). At the societal and policy levels, some toolkits offer monitoring. Three widely used assessment tools are: the suggestions to monitor advocacy activities and results (22). Service Provision Assessment (SPA) of the Demographic and Health Survey Programme; the WHO Service What data are needed? There is a need for further Availability and Readiness Assessment (SARA); and development of tools to measure the types of support the Emergency Obstetric and Newborn Care (EmONC) received by parents, families and newborns. Potential assessment managed by Columbia University’s Averting questions might include: were measures taken to ensure Maternal Death and Disability (AMDD) Programme and that parents/caregivers developed the appropriate skills supported in many countries by UNFPA (23). While the to care for their newborn in facility and after discharge? EmONC assessment has the most detailed newborn Do they report a positive care experience in the facility? content, all tools have limited measurement of more Do they share information regarding any situations of complex clinical care across the five domains listed disrespect and abuse? Are there facilities to help parents above. For example, none of the assessments listed stay close to their newborn (rooms for overnight stays, include treatment and screening for retinopathy of toilets, showers, provision of food)? Are there educational prematurity and effective phototherapy, and only the materials available to parents and caregivers? Was the EmONC assessment explores alternative feeding if newborn separated at any point from its mother without the infant is unable to breastfeed. However, each tool explanation? Are there community groups to provide support to parents and families? How do facilities link parents to these groups and to community health workers for support after discharge? Do community behaviours and practices towards inpatient care-seeking differ between female and male newborns? What information do parents receive about care for their newborn in the hospital and after hospital discharge? How well informed are commu nity-level services and health workers about the care and developmental needs of small and sick newborns? Were compassionate support and mental health services available for grieving families in the event of a newborn’s death?

Measuring health system inputs Key measurements based on the health system building blocks are described below (12).

Service-readiness measurement Why are these data needed? Service- readiness measurement assesses the availability of inpatient services for small and sick newborns and their ability to meet a minimum quality standard. Among other valuable contributions, it identifies gaps across five domains: facility infrastructure; health technologies (including equipment, medicines and supplies); care guidelines; human resources; training and

routine practices. © Amy Fowler / USAID

99 100 SURVIVE AND THRIVE: Transforming care for every small and sick newborn capabilities and toinform policy(25,26) . on readiness, perceptions ofcareandcommunications tools have beendeveloped andpilotedtocollect insights Situational analysis improvement assessmentandquality to better representtheneedsofparentsandnewborns. their use(24). The EmONC framework isbeingrevised health-facility assessmentsoften limitthefrequency of nologies (essentialmedicines). The size andcostof availability; robustreferral pathways; andhealth tech- retinopathy ofprematurity screening;separatespace methods (cupsandnasogastricfeeding); phototherapy; also beconsidered. This couldinclude alternative feeding Additional relevant criterianot currently captured might the toolswere alignedwithsimplified systems. data and sick newborns ifindicatorswere standardizedand tools couldbetter readinessfor capture small service What dataare needed?Health-facilityassessment most domains(Table 5.2). infection andimmediate/essentialnewborn careacross domains aswellantibioticsfor asinjectable neonatal withbagandmaskacrossallfive looks atresuscitation Key: EmONC =EmergencyObstetricandNewborn Care. HFA tools=HealthFacility Assessment tools;SPA Provision =Service Assessment; SARAAvailability =Service andReadiness Assessment; guidelines, trainingroutinepractice)arecurrently assessedincommonlyusedhealth-facilityassessmenttools. This shows table for each how readiness(infrastructure, intervention, many offive domainsofservice equipmentanddrugs, with HealthFacility Assessment tools Table readinessfor 5.2Measuringservice smallandsick newborns newborn care complexity Increasing ( ( Essential ■ ■ of care , 3)=threeoffive domainsareassessed;(■ , 0)=noneofthefive domainsareassessed;(■ Resuscitation withbagandmask breastfeeding Immediate andexclusive Thermal care Immediate newborncare Kangaroo mothercare Injectable antibiotics Intravenous fluidsandmanagementof hypoglycaemia Safe administrationofoxygen Assisted feeding(cupandnasogastric) Effective phototherapy Seizure management Blood transfusion airwayContinuous positive pressureandassisted/mechanical ventilation Treatment andscreeningforretinopathy ofprematurity Intervention for smallandsick newborn , 4)=four offive domainsareassessed;(■ , 1)=oneoffive domainsisassessed;(■ Innovation isneededto explore measurement strategies, recruitment, deployment, andmigrationpatterns. rotation levels care.Itisalso criticaltounderstand ofneonatal marks for competencies andstaffing ratios for different systems for robusthumanresourcestracking, withbench- What dataare needed?Research isneededintocreating Typically, however, availabilityislimited. ofthisdata resources systems andhealth-facilityassessment data. intensive newborn carecanbegathered fromhuman and trainingofhealthworkers for essential,specialand Which datacanbeusednow? Measuresoftheskills at therighttime. right workers withtherightskillscan be intherightplace cies andplantheprovision ofinpatientcare,sothatthe about healthworkers skillstoshapepoli- withneonatal Countries canuseaccurateinformation andevidence a majorhealthsystem bottleneck for newborn care(27). health workers, inadequatenumbers,isrecognized as Why are thesedataneeded? The lack trained ofsuitably Health workforce measurement , 5)=allfive domainsareassessed. , 2)=twooffive domainsareassessed;

SPA 5 3 4 4 2 4 1 1 0 0 2 1 1 0 HFA tools SARA

5 2 2 5 1 4 1 1 0 0 2 1 1 0

EmONC 5 4 3 5 3 5 4 3 1 0 2 1 1 0 CHAPTER 5 . Use data for action for data . Use including the experience of health workers in caring for newborns. There is also value in determining how health systems measure the support given to these caregivers. Better understanding of such complex issues would help to reverse a trend of trained professionals leaving the workforce due in part to stressful working conditions and burn-out.

Health management information systems Why are these data needed? A sustainable, reliable HMIS will track routine data from facilities to guide action at all levels within the health system.

Which data can be used now? Rapid expansion of electronic platforms and mobile health offer great potential to unify and align tradi- tionally fragmented information streams (9). The most widely used HMIS across LMICs is currently the District Health Information System 2 (DHIS2) (28). Guidance is emerging on core newborn indicators that can be tracked in HMIS to overcome the lack of data from LMICs (29).

Proposed “core tracer indicators” are applicable © Amy Fowler / USAID to all newborns, with indicators for small and sick newborns tracked under optional additional menus (KMC, Too often, data move up through the pyramid without feed- resuscitation, treatment for neonatal infection, preterm back loops connected to frontline health-care providers. birth rate and perinatal death reviews). In 2017, of 75 coun- Developing these links within the health system levels is a tries who reported using the Every Newborn Action Plan priority and would provide a more complete picture of care, tracking tool, only three included four newborn-specific for example through harmonized dashboards for small indicators in their national HMIS (30). Research is under- and sick newborn data (Fig. 5.1). Implementation research way on core coverage indicators for high-impact newborn designed to strengthen the relationship of data systems to care to meet the Every Newborn Action Plan’s measure- use data would improve real-time clinical decision-making ment improvement milestones (15). capabilities for the care of small and sick newborns.

What data are needed? Most countries rely on aggre- Long-term investment is critical to ensure interoperability gate data; few collect and report individual-level data to of electronic systems, including logistics, human resources allow tracking of specific newborns over time. Routine and HMIS. When integrated, these systems can reduce systems should be able to track individual newborns the burden on the system for all, from health workers to longitudinally and link them to their mothers, thus sup- policy-makers. Brazil’s robust response to the Zika virus porting a life-course approach to health for small and sick epidemic demonstrates the value of integrated HMIS newborns. Advances in infrastructure and software are which count births, stillbirths and neonatal deaths, as well driving a transition from predominantly paper-based to as rapidly identifying any increase in birth defects (31). mixed-format recording systems. Increasingly, even at the clinical level, electronic formats will be the basis of Health systems finance measurement HMIS data, with standardized neonatal inpatient records Why are these data needed? Financial data are needed including care and outcome data linked to a perinatal to plan service delivery elements, such as infrastructure, dataset. This was the foundation for many multisite health technologies and human resources. For UHC, data quality improvement initiatives for neonatal care in HICs. are needed to ensure access, determine who is paying, In India, real-time monitoring of SNCUs has already and protect families from catastrophic out-of-pocket been scaled up, and is measuring equitable access and expenses (14, 32). It is also important for accountability quality-care indicators and outcomes (Box 5.1). to track government and donor spending.

101 102 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© UNICEF India / 2017 / Ashutosh Sharma alized families andcommunities. death anddisability, particularlyamongpoorand margin- This coverage canpromotemore equitable andreduce andfor advocacy aroundUHCfinancing. accountability and children, includingnewborns, isneeded for stronger national tracking ofinvestments inthehealthofwomen Child) butrequireappropriate metrics(39).Regular Financing FacilityinsupportofEvery Woman Every outcomes toinvestment fundingfromtheGlobal (e.g. results-based financingoffer opportunities tolink What dataare needed?Pay-for-performance and small andsick newborns arescaledup. for rateswheninterventions the impactonmortality and researchers tocalculatebothfullfinancialcostsand also includesacostingmodulewhich allows countries health expenditure (37). The Lives Saved Tool (LiST) (38) pocket expenditures for families oftotal asapercentage women, children andadolescents. They includeout-of- coverageequitable ofeffective for healthinterventions on 2030 partnershipreportson81countrieswithdata conducted withtimetrends(35,36). The Countdown to analyses specificneonatal haveSince 2003, been with different methodologies(34). spending for RMNCHistracked by several organizations newborn-relatedto disentangle expenditures. Donor in conjunctionwithmaternalcareanditcanbedifficult (33). Challengesarisebecausenewborn careisdelivered could betracked throughnationalhealthaccountsdata Which datacanbeusednow? Government spending

and achieve Newborn SDG andEvery Action Plantargets. help governments toimprove efforts theirdata-related Multistakeholder globalpartnershipsandsupportwould and othercharacteristics relevant innationalcontexts. nicity, status, disability, migratory geographiclocation are disaggregatedby income,gender, age,race,eth- availability ofhigh-quality, that timelyandreliabledata development) target toincreasethe includesaspecific SDG 17 (Revitalize theglobalpartnershipfor sustainable Breastmilk Substitutes. ing adherencetotheInternationalCodeofMarketing of leave,maternity monitoringchild protection,andtrack- violations. This includesfightingcorruption, safeguarding by implementingsupportive policiesandtracking policy ership andgovernance areneededtoprotectnewborns health-care providers care.Goodlead- todeliver quality and whethertheworking environment isconducive for availability of more timely data on total births and deaths. birthsanddeaths. availability ontotal ofmoretimelydata tics (CRVS) systems are enablingarapidtransitionto the Increasing investments- statis incivilregistrationandvital Civil registration ofallfacility births anddeaths a significantimpact. ment for smalland sick newborns thatcouldquickly have This sectionhighlightspotentialchanges inmeasure- and usedatanow toimproveOpportunities force norms and standards, force normsandstandards, measures canassesswork- documents. Accountability ination ofkey healthsector regular designanddissem- policy andprocurement; national essentialmedicines date nationalhealthstrategy; the existence ofanup-to- (12) . Examplesmightinclude: for healthsystem governance priate policiesandstrategies whether countrieshave appro- Indicators couldmeasure small andsick newborns. and transparencyfor ability needed toimprove account- leadership andgovernance are Global, national,andlocal governance measurement Leadership and

CHAPTER 5 . Use data for action for data . Use Yet, small and sick newborns have often been underrepre- audit cycle includes specific steps which include the sented in, or missing from, these systems (41). Globally, identification and reporting of deaths; the collection more than 75% of births now occur in facilities, so there of information around the death; review and analysis is an immediate opportunity to close the gap by register- of the available information; the creation of actionable ing all who are born in a facility (Fig. 5.2). Although most recommendations; implementation of the recommen- newborns are weighed at the facility, there is another dations; and finally evaluation and refinement of the large gap (globally 40.5%, and in least-developed coun- audit system (Box 5.3). tries 46.5%) in data available for policy-makers to track LBW rates using routine administrative data from HMIS Use data to improve quality of care or CRVS. Adding birth weight to birth and death certifi- Counting alone is not sufficient to change practices. cates, as registration systems are strengthened, would Metrics need to be used for action to implement solutions integrate a health measurement specific to small and sick to improve quality of care (3). This action has the power to newborns that could be tracked. change lives and make it possible for small and sick newborns to grow into healthy, active and productive adults. Perinatal death reviews The Quality of Care Network (see Chapter 3), promotes Perinatal mortality audits and reviews are conducted the core values of quality, equity and dignity. The monitor- in a systematic process to identify modifiable factors ing framework will guide quality improvement implementa- related to the deaths of small and sick newborns. The tions and the use of data to track outcomes. The Network’s aim is to use the information gathered to make changes intent is to halve maternal and newborn deaths and to prevent similar deaths in future. In many settings, stillbirths in participating health facilities within five years it is a complex task to identify a newborn’s cause of (50). Since 2014, UNFPA has supported several countries death, and the factors that contributed to it. However, in sub-Saharan Africa to monitor selected maternal and evaluating mortality trends among small infants is newborn health indicators in EmONC facilities through useful for programming in all settings. The perinatal HMIS to address gaps in availability and quality of care (51).

Fig. 5.2 Gap analysis: newborns that are delivered in a facility, are registered, and have their birth weight recorded in routine data systems

100

80 4.3% % facility delivered 70 8.4% (2011-2016) 60 19.6% % registered (2010-2016) 40.5% 50 14.2% 12.8%

Percentage 40 % birthweight recorded in routine data system 30 (latest year between 2010 and 2016) 48.3% 20 46.5%

0 Global LDC* Southern Asia Sub-Saharan Africa Regional grouping

*LDC = Least Developed Countries (World Bank category). Data sources: Facility delivery and birth registration: State of the World's Children 2017 (42); birth weight: WHO systematic collation of data from routine national HIMS (unpublished).

103 104 SURVIVE AND THRIVE: Transforming care for every small and sick newborn newborns: forthe availabilityofdata smallandsick andquality gapsneedtobeprioritized data toincrease Certain Data for action:priorities Technical innovation to find ways to linkdata responders track progress for vulnerable newborns. These datacanguideactions andhelpemergency made available ifUHCisto berolled outinallsettings. stable settings. However, thesamedatamustbe small andsick newborns) thanfor thoseborn inmore those born during ahumanitarian crisis (especially Typically, health-related dataare lessavailable for the outcomesfor newborns inhumanitarian settings. Robust metrics are urgently neededto improve Box 5.4Datafor actioninhumanitarian settings natal auditandreview (45, 46). local to nationallevels, including maternal andperi- system andqualityimprovement processes from surveillance system. Itlinksthe healthinformation and report it. MPDSRisacontinuousaction and every maternal andperinatal death, andto register The MPDSRsystem serves to identifythecauseof how healthsystem failures canbeaddressed. more holisticrecord ofevents andto understand (MDSR) inmany countries. The aimisto create a with maternal deathsurveillance andresponse perinatal deathreviews are now beingintegrated these deaths, andprevent similaronesinfuture, pregnancy orchildbirth (8, 43, 44). Toinvestigate day, women 800 diedueto complicationsduring last monthsinutero, diesevery sixseconds. Every It isestimated thatanewborn, orafetus during the Box 5.3Maternalandperinataldeathsurveillance andresponse(MPDSR) • • to child development andnutrition. Standardize indicatorsfor at-risknewborns linked To ensure healthandwell-being (Thrive) – small andsick newborns andconnectwithHMIS. toolstoinclude sets. Standardizeservice-readiness records for newborns- tocomparablecoredata into HMIS. Linkindividualstandardizedclinical indicators for smallandsick newborns, integrated validated facility-based coverage andquality-of-care To endpreventable deaths (Survive) –Use

next 11 years toachieve the2030SDGtargets. that governments andstakeholderscan takeduringthe 5.4). The following chapter reviews theconcretesteps urban slumenvironmentssettings orhumanitarian (Box those thataremarginalized, hard-to-reach, orborninto sick newborn –even thoseborninhigh-burdensettings, actiontofulfiltheSDGpromise for smalland sary every foractioncandrive data equitable theneces- of quality Closing thesegapsandincreasingtheavailability anduse malnutrition amongsmallandsick newborns. prevention andtreatment ofundernutrition and prevalent nutrition amongthoseaged 0–6monthsishighly more than6 months, there is evidencethatmal- nutrition surveys typically onlyincludeinfants aged tion effectively inallsettings. Additionally, while metric tools (e.g. health-facility assessments)func- munities isalsoneeded; itiscrucial to ensure that from humanitarian settings to stablehostcom- perinatal deaths(49). the qualityofcare andavert future maternal and cause ofdeathiscollected andusedto improve order to ensure thatinformation oneach deathand States to support theimplementationofMPDSRin WHO andpartners are working closelywithMember that there isagap between policyandpractice. ment isstronger for mothersthanfor newborns, and review ofstillbirths. This suggests thatpolicycommit- natal deaths, butonly41hadanationalpolicyonthe reported having anationalpolicyonthereview ofneo- guidance twice ayear, asrecommended by MPDSRtechnical maternal deathreview committee, butonly46%met to review such deaths; 76% ofcountries hadanational policies for notificationof all maternal deathsand85% In 2015, 86%ofallcountries globallyreported having • for newborns, family andhealth-careproviders. demand,andrespectfulcare of care,community settings.humanitarian Measurefamily experience newborns inallsettings, includingthosebornin (Transform) –Improve metricsfor smallandsick To expandenablingenvironments inallsettings (47, 48). For perinatal deaths, 56countries (52). Research isneededto improve the CHAPTER 5

A PARENT’S STORY action for data . Use

After her newborn son falls ill, a Filipina nurse gains a new perspective

Sebastien Julian arrived at a healthy 3 kg at 38 weeks’ A few weeks into this hospitalization, Sebastien devel- gestation. His mother, Kathleen Abordo Rodriguez, oped pneumonia which further extended his inpatient delivered at a private hospital in Cebu. This is the same stay. Eventually he was discharged, but after only a facility where she also worked as a paediatric intensive week Sebastien was readmitted after an asthma attack. care nurse. After Sebastien was born, it was clear that This routine became a pattern due to Sebastien’s aller- something was not quite right. gies and asthma. “They put my son on oxygen “He was in and out of the hospital for two years,” because his saturations were Kathleen remembered. low,” Kathleen said. “They gave Sebastien is now a friendly and playful 12-year-old. But him an IV and started him on his family is very protective of him because of what he antibiotics because they thought went through. Through this experience, Kathleen has that he had a respiratory infec- become a champion for the health of children of all tion.” Sebastien spent his first ages. It has also changed the way she nurses. seven days in the hospital and was diagnosed with jaundice. “I became more of an advocate. I talk to mothers, and I The physician told Kathleen that sunlight would share more.” Since her time in the Philippines, Kathleen correct it and discharged them. However, after they has gone on to work as a paediatric and cardiac intensive had gone home, Sebastien’s skin turned from yellow to care nurse in Saudi Arabia and the orange. A week later Kathleen brought her son back to USA. In these higher-income settings, the hospital. she has witnessed more access to technologies, better follow-up care, “As soon as the doctor saw the baby he said, ‘We need and emotional support for parents. to bring him to the emergency room,’” Kathleen recalled. “His bilirubin was really, really high.” Sebastien required a “I wish everyone had access to blood transfusion and spent seven days on phototherapy. health care,” Kathleen said. “There were many instances in the Philippines where we had “I felt blank,” Kathleen said about her emotions during to discharge patients that we knew couldn’t survive that second hospitalization. “I remember walking down because their families weren’t able to pay. There, for the a long hallway. I didn’t even know where I was going. I complex cases anyway, you don’t get a chance. And I passed by my son’s room. One of my colleagues asked believe that every child deserves a chance.” me where I was headed. Suddenly, I burst into tears.”

105 106 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 14. 13. 12. 11. 10. 9. 8. 7. 6. 5. 4. 3. 2. 1. REFERENCES

abledevelopmentgoals, accessed 26February 2019). (https://sustainabledevelopment.un.org/topics/sustain- UNDESA. Development Sustainable Goals.2015 health. New York: Every Woman Child;2016. Every global strategyfor women’s, children’s andadolescents’ EWEC. Indicatorandmonitoring framework for the Organization; 2010. measurement strategies.Geneva: World Health systems: ahandbookofindicatorsandtheir WHO. Monitoringthebuildingblocks ofhealth enap-metrics-cards/, accessed5March 2019). (https://www.healthynewbornnetwork.org/resource/ cards. The Healthy Newborn Network.Published 2017 WHO, UNICEF, LSHTM. newborn Every metricsreport Geneva: World HealthOrganization;2015. Ferney Voltaire, France, 3–5December2014. health indicators:everynewborn actionplanmetrics: WHO. WHO technical onnewborn consultation Pregnancy Childbirth.2015;15 (Suppl2):S8. ment improvement roadmapfor coverage BMC data. S, Grove J, etal.Counteverynewborn; ameasure- Moxon SG,Ruysen H,Kerber KJ, Amouzou A, Fournier 2014;384(9941):455–67. a healthyfor start thenext generation.Lancet. M, Pillay Y, etal.From evidence toactiondeliver Mason E,McDougallL,Lawn JE,Gupta A, Claeson Organization; 2014. ventable deaths(ENAP).Geneva: World Health WHO. newborn: Every anactionplantoendpre- scale-up incountries.Lancet.2014;384(9941):438–54. systems bottlenecks andstrategiestoaccelerate Vesel L,Lackritz newborn: E,etal.Every health- Dickson KE,Simen-Kapeu A, Kinney MV, Huicho L, Health Organization;2018. indicators (plushealth-relatedSDGs).Geneva: World WHO. 2018 globalreference listof100 corehealth New York: UnitedNationsChildren’s Fund; 2018. agency groupfor child estimation(UNIGME). mortality 2018. Estimatesdeveloped by theUnitedNationsinter- UN IGME.Levels &trendsinchild report mortality: Health Organization;2016. and newborn careinhealthfacilities. Geneva: World WHO. for Standards improvingofmaternal quality of Western Cape/HISP/MSH/EQUITY Project. manual for healthworkers atfacilitylevel. University Heywood A, Rohde J. Usinginformation for action–a 1996;18(3):45–9. syndrome: isthereatreatment?Radio Manage. Goodwin S. rich, Data information poor(DRIP) 25. 24. 23. 22. 21. 20. 19. 18. 17. 16. 15.

26 February 2019). dle/10665/137340?locale=ar&mode=full, accessed Office for Europe;2014 (http://apps.who.int/iris/han- tool. Geneva: World HealthOrganizationRegional assessmentandimprovementbabies: quality WHO. care for Hospital mothersandnewborn World Health Organ.2017;95(6):445–52i. nal andnewborn care:afeasibility assessment.Bull N. Developing globalindicatorsfor ofmater quality Madaj B, SmithH,MathaiM,Roos N,van denBroek Glob Health.2018;8(1):010702. what dowe needandwhatcanwe measure now? J iness for inpatientcareofsmallandsick newborns: C,Ram PK,NiermeyerLaryea read- S, etal.Service Moxon SG,Guenther T, Gabrysch S, Enweronu- 26 February 2019). ance-manual-ending-preventable-deaths/, accessed org/resource/every-newborn-advocacy-toolkit-guid- cacy toolkit(https://www.healthynewbornnetwork. Healthy Newbornnewborn advo Network.Every - Preemie/SCALE; 2017. weight newborns inBalaka District,Malawi. Every and practicesregardingpretermlow birth health careprovider knowledge, attitudes, beliefs Formative assessmentofcommunity, family and Robb J, GreensidesD, KamangaE,Litch J. family-centered care.JPediatr Nurs.1997;12(4):214–22. Bruce B, Ritchie J. Nurses’ practicesandperceptionsof 26 February 2019). accessed nationalperinatal.org/support4nicuparents, ment toolfor comprehensive family support(www. US NationalPerinatal Association. NICUself-assess- monitoring-evaluation/, accessed26February 2019). web page(www.healthynewbornnetwork.org/issue/ Healthy Newborn Network.Monitoringandevaluation downloads-tools.html, accessed26February 2019). Family-Centred Care(www.ipfcc.org/resources/ for family-centred care.Institute for Patient- and IPFCC. Inventory ofstructured assessmenttools Care Med.2017;45(1):103–128. pediatric,andadultICU.care intheneonatal, Crit Kross EK,HartJ, etal.Guidelinesfor family-centered Davidson JE, Aslakson RA,Long AC, Puntillo KA, Health. 2019;9(1):10902. doi:10.7189/jogh.09.01902 health careinBangladesh, Nepaland Tanzania. JGlob for coverage ofmaternalandnewborn andquality studyprotocol: observational validating indicators Boggs D, CousensS, etal. Newborn-BIRTH”“Every Day LT, Ruysen H,Gordeev VS, Gore-LangtonGR, - CHAPTER 5 . Use data for action for data . Use

26. Every Preemie/SCALE. Situation analysis of inpatient 39. Global Financing Facility website (https://www.global- care of newborns and young infants. Published 2017. financingfacility.org/, accessed 26 February 2019). (https://www.everypreemie.org/technical-materials/, 40. Ottersen OP, Dasgupta J, Blouin C, Buss P, accessed 26 February 2019). Chongsuvivatwong V, Frenk J, et al. The political 27. Moxon SG, Lawn JE, Dickson KE, Simen-Kapeu A, origins of health inequity: prospects for change. Gupta G, Deorari A, et al. Inpatient care of small and Lancet. 2014;383(9917):630–67. sick newborns: a multi-country analysis of health 41. McCarthy BJ, Terry J, Rochat RW, Quave S, Tyler CW. system bottlenecks and potential solutions. BMC The underregistration of neonatal deaths: Georgia Pregnancy Childbirth. 2015;15 Suppl 2:S7. 1974–77. Am J Public Health. 1980;70(9):977–82. 28. DHIS2. District health information software 2 42. UNICEF. The state of the world’s children 2017 statis- (DHIS2) website (https://www.dhis2.org, accessed tical tables. Published December 2017 (https://data. 26 February 2019). unicef.org/resources/state-worlds-children-2017-sta- 29. WHO, UNICEF. RMNCAH HMIS module: analy- tistical-tables/, accessed 26 February 2019). sis and use of health facility data – guidance for 43. Lawn JE, Blencowe H, Waiswa P, Amouzou A, Mathers RMNCAH programme managers (https://www.who. C, Hogan D, et al. Stillbirths: rates, risk factors, and accel- int/healthinfo/FacilityAnalysisGuidance_RMNCAH. eration towards 2030. Lancet. 2016;387(10018):587–603. pdf, accessed 20 May 2019). 44. WHO, UNICEF, UNFPA, World Bank, UNFPA. Trends 30. WHO, UNICEF. Reaching every newborn national in maternal mortality: 1990 to 2015. Geneva: World 2020 milestones: 2018 progress report. Geneva: Health Organization; 2015. World Health Organization and UNICEF; 2018. 45. WHO. Maternal death surveillance and response: tech- 31. Teixeira MG, Costa Mda C, de Oliveira WK, Nunes ML, nical guidance information for action to prevent mater- Rodrigues LC. The epidemic of Zika virus-related micro- nal death. Geneva: World Health Organization; 2013. cephaly in Brazil: detection, control, etiology, and future 46. WHO. Making every baby count: audit and review of scenarios. Am J Public Health. 2016;106(4):601–5. stillbirths and neonatal deaths. Geneva: World Health 32. WHO. Making fair choices on the path to universal Organization; 2016. health coverage: final report of the WHO consulta- 47. WHO. Time to respond: a report on the global tive group on equity and universal health coverage. implementation of maternal death surveillance and Geneva: World Health Organization; 2014. response. Geneva: World Health Organization; 2016. 33. WHO. Guide to producing child health subaccounts 48. WHO. Maternal, newborn, child and adolescent within the national health accounts framework. health policy indicators wesbiste (http://www.who. Geneva: World Health Organization; 2012. int/test/forms/mncah/, accessed 26 February 2019). 34. Pitt C, Grollman C, Martinez-Alvarez M, Arregoces 49. UNICEF. Skill building on perinatal death reviews for L, Borghi J. Tracking aid for global health goals: a health-facility teams (www.healthynewbornnetwork. systematic comparison of four approaches applied org/resource/skill-building-on-perinatal-death- to reproductive, maternal, newborn, and child health. reviews-a-facilitator-guide-and-resources/, accessed Lancet Glob Health. 2018;6(8):e859–e874. 26 February 2019). 35. Grollman C, Arregoces L, Martínez-Álvarez M, Pitt C, 50. WHO. Quality, equity, dignity: a network for improv- Mills A, Borghi J. 11 years of tracking aid to reproduc- ing quality of care for maternal, newborn and child tive, maternal, newborn, and child health: estimates health. Geneva: World Health Organization; 2017. and analysis for 2003-2013;13 from the Countdown 51. UNFPA. Maternal health thematic fund: towards to 2015. Lancet Glob Health. 2017;5(1):e104–e114. equality in access, quality of care and accountability 36. Pitt C, Grollman C, Martínez-Álvarez M, Arregoces L, – phase II (2014–2017) progress report. New York: Lawn JE, Borghi J. Countdown to 2015: an analysis United Nations Population Fund; 2017. of donor funding for prenatal and neonatal health, 52. Kerac M, Blencowe H, Grijalva-Eternod C, McGrath 2003–2013. BMJ Glob Health. 2017;2(2)e000205. M, Shoham J, Cole TJ, et al. Prevalence of wasting 37. Countdown to 2030 website (http://countdown2030. among under 6-month-old infants in developing org/, accessed 26 February 2019). countries and implications of new case definitions 38. The Lives Saved Tool (LiST) website (http://www. using WHO growth standards: a secondary data livessavedtool.org/, accessed 26 February 2019). analysis. Arch Dis Child. 2011;96(11):1008–13.

107

Immediate action is needed

109 KEY MESSAGES

• 1.7 million newborn lives could be saved each year by investing in quality newborn care; almost half of this impact (747 400 newborn lives saved per year) would result from providing special and intensive hospital care for small and sick newborns. Universal access to quality care could prevent 68% of the newborn deaths that will otherwise occur in 2030, as well as reduce stillbirths and maternal deaths by almost half. Importantly, if the quality gap for births already in hospitals were closed by providing special and intensive newborn care, then 667 200 newborn lives could be saved immediately.

• Reaching the targets of the SDGs and the Every Newborn Action Plan to end preventable newborn mortality by 2030 requires transforming care for small and sick newborns through health system investments, implementation, information and innovation. While there is a strong evidence base for scaling up many interventions in low- and middle-income countries (notably kangaroo mother care), most research on intensive care for small and sick newborns occurs in high- and middle-income countries. Investing in research and development is critical to support evidence-based, context-relevant scale-up.

• Everyone has a role to play in transforming care for every newborn, including those newborns who are small and sick. More commitments, including within the Every Woman Every Child movement, will be needed to build an enabling environment and accelerate progress in all communities and countries. Working together, governments and partners, health-care professionals, empowered parents, and engaged communities can make a brighter future for the next generation.

Lives-saved analysis

This section presents the results of an updated lives- for the period 2016–2030, with interim results for 2020 saved analysis, building from what was published in and 2025. Details of the analysis are provided in Box 2014 as part of The Lancet Every Newborn series to 6.1 and in Annex 1. Results are presented as lives saved inform the Every Newborn Action Plan (1, 2). Some per year. 81 countries were considered for the analysis for this report. They were identified by Countdown to 2030 as Expanding coverage of key interventions before, during, priority countries, since together they accounted for and after pregnancy could save the lives of nearly 2.9 95% of maternal deaths and 90% of deaths among million women, stillbirths and newborns by 2030 in children under 5 years of age. The analysis was con- the 81 countries. Table 6.1 gives a breakdown of the ducted with the Lives Saved Tool (LiST) (3), using the results, showing that overall high coverage (95% of most recent country-specific data to project outcomes evidence-based interventions) could avert 54% of all

Table 6.1 Estimated maternal and newborn lives saved and stillbirths averted in 2030, with scale-up to universal health coverage with quality maternal and newborn health care

Lives saved Number of deaths averted Percentage of deaths averted

Maternal 134 300 39%

1 691 900 Neonatal 68% (of which 747 400 are small and newborns)

Stillbirths prevented 1 051 700 43%

TOTAL 2 877 900 54%

111 112 SURVIVE AND THRIVE: Transforming care for every small and sick newborn could save newborn 72200 lives; andto75% by 2025 expansion to50% by ofthesetwointerventions 2020 increases for the81 Countdown countriesfound that to 75%by 2025. A LiST analysis lookingatcoverage populationsto50%by topriority 2020and resuscitation includedscaling-upKMC andneonatal interim targets achieving theultimategoalofUHCby 2030. These for asasteptowardstargets newborn interventions, The Newborn Every Action Plansetinterimcoverage approach tohealth. continuum ofcare,andaspartUHCalife course of addressingsmallandsick newborn carewithinthe pregnancy (11%). This findingsignifies theimportance averted), followed by careatbirth(36%)andduring and intensive deaths newborn care(44%ofallneonatal gains wouldrelatingtospecial occurfrominterventions care couldsave 747 newborn 400 lives. The maximum specifically, highcoverage specialandintensive ofquality sick newborns 6.1).For (Fig. smallandsick newborns able deathsincludecareatbirthandfor smalland ages ofcarewiththegreatestimpactonendingprevent- maternal andnewborn deathsandstillbirths. The pack- and stillbirths byand stillbirths 2030,from a2016 baseline Fig. 6.1Estimatedeffect ofscaling-upinterventionsonmaternalandneonataldeaths Lives saved Adapted from:Bhuttaetal.2014.Canavailableinterventionsendpreventabledeathsinmothers,newbornbabies,andstillbirths,atwhatcost?(2). 1 1 1 1 200 400 600 800 000 200 400 600 000 000 000 000 000 000 000 000 - Preconception nutrition care 5 600 Pregnancy 602 care 600 labour andchildbirth Care during 1 357 000 live 6.2). births (Fig. reducing theglobal average NMRto9deaths per1000 most couldachieve by theSDG3.2target 2030, thus births by 2030.Nonetheless, withtherightinvestments, would achieve anaverage of18 deathsper1000 live Saved Tool. At thecurrent trajectory, these countries was calculated usingtheLivesprojected NMRtrajectory calculated usingestimatesfromUNIGME2017 (6);the by 2030.Current andrequiredNMRtrajectories were of 12the SDG3.2target deathsper1000 live births special andintensive newborn care,in ordertomeet forhigh-impact interventions newborn health,including The 81countriesneedtoinvest inuniversal coverage of Reaching theSDGtarget sive intensive neonatal care. countries tosettheirownfor interimtargets comprehen- target. The Newborn Every Action Planalsocalledfor alonewillnotbesufficienttargets tomeettheSDG3.2 Newbornthese twoEvery Action Planinterimcoverage could save 150 newborn 600 lives. However, meeting healthy newborn Care ofthe 156 900 and sicknewborns Care ofsmall 747 400 Stillbirths Neonatal deaths Maternal deaths

CHAPTER 6 . Immediate action is needed is action . Immediate Closing the “quality of care gap” with special and intensive newborn care

The study included an analysis of the current “quality of care gap” between mothers and infants with access to the most effective maternal and newborn care, and those with no such access. It is assumed that the coverage of women delivering in facilities remained at today’s levels but that 95% of these women and their babies will actually receive high quality newborn care by the year 2025, including special and intensive © Amy Cotter / USAID newborn care. This analysis found that 28% of newborn deaths (a total of 667 200 deaths) intensive newborn care in this way would result in a could be averted in 2025 by addressing the quality gap 59% increase in the number of lives saved. in special and intensive newborn care. Expanded case management of prematurity would account for half Improving quality among births in facilities would also of the impact (Tables 6.2 and 6.3). With only special benefit mothers and prevent stillbirths. This quality gap newborn care available, 11% of newborn deaths (a analysis found that 19% of all maternal and newborn total of 268 900 deaths) could be averted in 2025, with deaths and stillbirths could be averted in 2025, totalling improved management of labour and delivery as a 961 800 newborn deaths, maternal deaths and stillbirths leading contributor. Provision of high-quality special and compared to a baseline assuming no coverage change.

Fig. 6.2 Scenarios to 2030 for 81 high-burden countries: current neonatal mortality rate trajectory; trajectory required to meet SDG target 3.2; and projection if every newborn covered by universal health coverage

30 R S

10 5

0 2016 2018 2020 2022 2024 2026 2028 2030

Source data: UN IGME 2017 (3); projected trajectory calculated using Lives Saved Tool.

113 114 SURVIVE AND THRIVE: Transforming care for every small and sick newborn tality shows that hospital-based care of preterm newborns, shows careofpreterm newborns, thathospital-based tality mor tions addressing thesethreemajorcausesof neonatal - sepsis andpneumonia).Evidence fromspecificinterven deathsrelatedtoseriousinfectionsneonatal (such as due tointrapartum-related complications;and74% fewer 86% fewer deathsduetoprematurity; 76% fewer deaths Full couldresultinanestimated scale-upofallinterventions of neonatalmortality Impact onmajorcauses so noadditionaldeathsareaverted inthismodel. ** IntheLiST model,facilities arealreadyassumedtooffer antibioticsfor infection, injectable neonatal received accesstoCEmONCandspecialnewborn care orintensive newborn care. * Effect ofprovision offacility careonnewborn lives saved by in2025if95%ofallfacilitydeliveries intervention Table 6.3Closingthequality gap:scenariosfor totalnewborn lives saved in2025,by intervention and newborn lives saved averted andstillbirths in2025 Table 6.2Closingthequality gap:scenariosfor totalmaternal TOTAL Stillbirths prevented Neonatal Maternal Quality gap closedfor allfacility births (withspecialcare) Interventions reaching 95%ofmotherswhogive birth inafacility* Quality gap closedfor allfacility births (withintensive care) Neonatal resuscitation management Labour anddelivery Kangaroo mothercare Injectable antibioticsforneonatalsepsis/pneumonia** Antibiotics forpretermprematureruptureofmembranes(PPROM) Age-appropriate breastfeedingpracticesduetopromotionof Neonatal resuscitation management Labour anddelivery Case managementofprematurity Case managementofneonatalinfection Antibiotics forPPROM Quality gap closedfor allfacility births Lives saved

563 400 248 300 268 900 46 300 (with specialnewborn care) deaths averted Percentage of - 14.3% 10.5% 11.0% 11.1% averted infection-related 6.3). deaths(Fig. contributing tothehighestproportionof the interventions care practices(48%)andclean birthpractices(18%) are newborns athealthfacilities, soscale-upofcleanpostnatal infectionsneonatal isalreadyassumed tobeavailable toall deaths. The provision antibioticsfor ofinjectable serious responsible for averting ofintrapartum-related themajority (19%) resuscitation management (64%)andneonatal are preterm-related deaths. Appropriate labouranddelivery including thosereceivingintensive care(75%),averts most

Quality gap closedfor allfacility births Lives saved 961 800 248 300 667 200 46 300 (with intensive newborn care) Neonatal lives saved deaths averted Percentage of 352 200 352 200 130 600 130 600 130 600 130 600 117 700 53 400 53 400 68 900 53 300 53 300 13 600 13 600 13 500 13 500 2 500 2 500 N/A 14.3% 18.8% 10.5% 27.6% Intrapartum-related neonatal deaths

Neonatal resuscitation: 506,100

Micronutrient supplementation Balanced energy (iron and multiple supplementation: micronutrients): 65,210 109,000 CHAPTER 6 Immediate assessment ITN*/IRS** – and Households stimulation: IPTp#: protected from

Labour and delivery management: 1,682,940 134,860 40,800 needed is action . Immediate Fig. 6.3 Estimated effect of interventions on the three main causes of neonatal deaths malaria:in 2030 33,830 Calcium Intrapartum-related neonatal deaths supplementation: 38,220

Infection-related neonatal deaths (sepsis, pneumonia)

Neonatal resuscitation: 506,100 Hygenic cord care – Clean birth practices: 288,250 Chlorhexidine: 200,800 Micronutrient supplementation Balanced energy (iron and multiple supplementation: micronutrients):Prevalence 65,210 Balanced energy109,000 of early ITN*/IRS** – Immediatesupplementation: initiation of Households ITN*/IRS** – assessment65,310 breastfeeding: protected from and 55,850 Householdsmalaria: 35,960 stimulation: IPTp#: protected from Labour and delivery management: 1,682,940 134,860 40,800 Syphilis malaria: 33,830 Antibiotics detection Calcium Calcium for PPROM°: and treatment: IPTp#: supplementation: supplementation: Clean postnatal practices: 773,300 95,020 58,830 34,480 33,820 38,220 Micronutrient supplementation Infection-related neonatal(iron deaths and multiple (sepsis, micronutrients): pneumonia) 103,220

Preterm-related neonatal deaths (direct complications)

Micronutrient supplementation (ironHygenic and multiple cord care Neonatal – micronutrients): resuscitation: Clean birth practices: 288,250 Chlorhexidine: 200,800 278,290 200,530

Prevalence Balanced Labour and Balanced energy of early ITN*/IRS** – energy delivery supplementation: initiation of Households supplementation: management: 65,310 breastfeeding: protected from 190,430 55,850 164,880 malaria: 35,960 Immediate Calcium Syphilis assessment supplementation: Antibiotics detection Calcium and 84,210 for PPROM°: and treatment: IPTp#: supplementation: stimulation: Clean postnatal practices: 773,300 95,020 58,830 34,480 33,820Antibiotics 164,880 for PPROM°: 79,910 Micronutrient supplementation Antenatal (iron and multiple micronutrients): IPTp#: corticosteroids Case management of premature babies (KMC or intensive care):103,220 4,003,710 79,490 for preterm labour: 15,950 ITN*/IRS** – Households * ITN – insecticide-treated bed nets.Preterm-related neonatal deaths (direct complications)protected from malaria: ** IRS – indoor residual spraying. 110,670 # IPTp – Intermittent preventative treatment of malaria during pregnancy. ° PPROM – preterm premature rupture of membranes.

Micronutrient 115 supplementation (iron and multiple Neonatal micronutrients): resuscitation: 278,290 200,530

Balanced Labour and energy delivery supplementation: management: 190,430 164,880

Immediate Calcium assessment supplementation: and 84,210 stimulation: Antibiotics 164,880 for PPROM°: 79,910 Antenatal IPTp#: corticosteroids Case management of premature babies (KMC or intensive care): 4,003,710 79,490 for preterm labour: 15,950 ITN*/IRS** – Households * ITN – insecticide-treated bed nets. protected from malaria: ** IRS – indoor residual spraying. 110,670 # IPTp – Intermittent preventative treatment of malaria during pregnancy. ° PPROM – preterm premature rupture of membranes. 116 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© UNICEF / UNI190095 / Quarmyne (continued) Fig. 6.3Estimatedeffect ofinterventionsonthethreemaincausesneonataldeathsin2030 this report. This analysis indicates thatscale-upto95% inthepublishedpaper,6.1 anddetailed were usedfor newborns, accordingtothemethodsoutlined in Table costs associatedwithscalingupcarefor smallandsick Newbornlished inThe seriesshowing LancetEvery the The resultsfromacomprehensive costinganalysis pub- small andsick newborns Cost ofinpatientcarefor ° # ** * Labour anddeliverymanagement:1,682,940 Clean postnatalpractices:773,300 Case managementofprematurebabies(KMCorintensivecare):4,003,710 PPROM –pretermprematureruptureofmembranes. IPTp –Intermittentpreventativetreatmentofmalariaduringpregnancy. IRS –indoorresidualspraying. ITN –insecticide-treatedbednets. Pr Inf et ection-r er m-r Intr elat elat apar ed neonataldeaths(dir ed neonataldeaths(sepsis, t um-r Clean birthpractices:288,250 elat 103,220 (iron andmultiplemicronutrients): Micronutrient supplementation ed neonataldeaths for PPROM°: Antibiotics 95,020 campaign (launched inearly2018) (1). Child Health, andcomplement theUNICEFEvery Alive Global Strategyfor Women’s, Children’s and Adolescents’ Child movement, Newborn theEvery Action Planandthe lessons learned. They expand ontheEvery Woman Every report buildoncurrent epidemiology, historicaltrendsand attainable ofhealth. Key standard tenetssetoutinthis enabling newbornsthrive tosurvive, andenjoy thehighest for Urgent actionisneededtomeetthe2030SDGtargets The pathto2030 death averted). andUS$1700million (US$0.20percapita pernewborn and sick newborns by 2025isestimatedatUS$959.3 scaling-up carespecifically for inpatientcareof small As shown in Table costof 6.4,theannualincremental saved (maternal,newborn orstillbirth)(2). 5.6 billion(US$1.15 perperson)orUS$1929 for each life above detailed wouldof interventions costjustover US$ coverage by 2025ofthesamecomprehensive package ect complications) Neonatal resuscitation:506,100 assessment stimulation: Immediate pneumonia) 134,860 Balanced energy supplementation: and and treatment: detection Syphilis 65,310 58,830 110,670 protected frommalaria: ITN*/IRS** –Households supplementation: (iron andmultiple supplementation micronutrients): (iron andmultiple stimulation: assessment supplementation Micronutrient Immediate micronutrients): Balanced 40,800 Micronutrient IPTp Chlorhexidine: 200,800 Hygenic cordcare– 164,880 energy 190,430 and 278,290 109,000 # breastfeeding: : initiation of Prevalence 34,480 of early IPTp 55,850 # : management: Labour and resuscitation: 38,220 supplementation: Calcium 79,490 IPTp delivery Neonatal 164,880 200,530 # : 33,820 supplementation: Calcium 15,950 for pretermlabour: corticosteroids Antenatal for PPROM°:79,910 Antibiotics 84,210 supplementation: Calcium malaria: 33,830 protected from Households ITN*/IRS** – malaria: 35,960 protected from Households ITN*/IRS** – 65,210 supplementation: Balanced energy

CHAPTER 6

Table 6.4 Incremental cost of the scale-up plan for the year 2025 needed is action . Immediate

Annual incremental costs in 2025 (US$ million)

Drug and Workforce Other Capital costs supply costs costs recurrent costs TOTAL COSTS

Total cost for 1 187.3 2 115.5 1 995.3 347 301.0 5 645.3 comprehensive package*

Subtotal cost for care of the 423.8 88.7 335.1 111.7 959.3 small and sick neonatal package

* Total package includes preconception nutrition care, antenatal care, care during labour and childbirth, immediate neonatal care, care of the healthy neonate and care of the small and sick neonate. Table adapted from: Bhutta et al. 2014 (2). More information on components of these categories and the methods and data sources can be found in the supplementary files of Bhutta et al(2).

Based on this framework, the path to 2030 requires: Every Newborn Action Plan: strategic objectives The Every Newborn Action Plan establishes a clear vision to 1. Targeted advocacy and policy efforts in con- improve newborn health and prevent stillbirths. It calls on all junction with engaged and empowered parents’ stakeholders to take specific actions to improve access to organizations, health-professional associations, health care for women and newborns across the contin- and civil society organizations. These efforts uum of care, and to improve quality of care. In recognition should uphold the rights of newborns through of the transformation already underway in many countries comprehensive laws, policies and regulations for and the need for expanded commitment, this call to action protecting and promoting newborn health and is intended for governments, in collaboration with stake- well-being at the national and subnational levels, holders, and builds upon the Every Newborn Action Plan. including in humanitarian settings. Illustrative actions are categorized under four action-ori- 2. A focus on equitable, high-quality and afford- ented themes: Invest, Implement, Inform and Innovate (as able services along the continuum of care that originally presented in Born Too Soon). reach underserved and marginalized populations, including in humanitarian settings. The Every Newborn Action Plan strategic objectives, 3. A family-centred approach, where small and sick adapted for this report to focus specifically on small and newborns are the focus of care and parents (along sick newborns, are to: with other caregivers, such as those in humanitar- 1. Strengthen and invest in care around the time of ian settings) are actively engaged and empowered birth and care for small and sick newborns; during hospitalization and in the community. 2. Improve the quality of maternal and newborn care; 4. Health systems that ensure full access to 3. Reach every woman and newborn to reduce high-quality essential and special newborn inequities; care for the small and sick, with regionalized 4. Harness the power of parents, families availability of intensive newborn care for those and communities; and who are extremely small or very sick, supported 5. Count and track every small and sick newborn. by strong referral systems. 5. Health systems to scale-up their special and Strategic objective 1: Strengthen and intensive newborn care services and ensure invest in care around the time of birth complementary systems are in place for contin- and care for small and sick newborns ued medical support during early childhood to This strategic objective has been expanded from its minimize development delays and disabilities. original language (strengthen and invest in care during 6. Accurate, reliable data to facilitate planning labour, birth and the first day and week of life) to empha- efforts; to measure quality, outcomes and impact; size the provision of care for small and sick newborns. and to promote accountability. While many lives can be saved with quality maternal and

117 118 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Table 6.5 Assumptions for thefive lives-saved scenarios rates from United Nationssources. Baselinecoverage including mortality rates andstunting andwasting sent themostup-to-date detailsabouthealthstatus, countries, baselinescenarios were created thatrepre- of theprevalence ofarisk factor. For each of the 81 deaths from oneormore causes, orinreduction the effect ofincreased coverage ofinterventions on tion oftheinterventions usingLiST, which estimates the approach was astandard sequentialintroduc- the modelinanumberofways (8). For bothanalyses, earlier analysisinvolved 75countries) andupdating differences includetheselectionofcountries (the main approach to thatpublishedin2014 (2).The ducted from Juneto August 2018 usingasimilar (87%) (96%) countries represent most ofthematernal deaths tries were includedintheanalysis. These 81priority For thisreport, theCountdown to 2030priority coun- (4). See Annex 1for more details. tality andstillbirths, aswell asstunting andwasting interventions onmaternal, neonatalandchild mor that allows usersto compare theeffects ofdifferent (2, 3). LiST isafree andwidelyusedsoftware module the countries withthehighestburden ofmortality impact andcostofscalinguptheseinterventions in and health, andonstillbirths. Itthenmodelledthe of care thathave animpactonnewborn mortality ically reviewed interventions across thecontinuum In 2014, TheLancetEvery Newborn series systemat - Box 6.1Methodsfor modellinglives saved Universal healthcoverage Quality gap withintensive care Quality gap withspecialcare Interim targets Baseline SCENARIO (7) occurring globally. The analysiswas con- (5), neonataldeaths(89%)(6), andstillbirths baseline toreach 95% coverage in2030 Coverage ofallinterventions thatimpactneonatalmortality scaled-upfrom facilities in2025 newborn carescaled-upfrom baseline toreach birth 95%ofallwomengiving in Coverage ofallinterventions withimpactonessential,specialandintensive facilities in2025 care scaled-upfrombaselinetoreach birth 95%ofallwomengiving in Coverage ofallinterventionswithimpactonessential andspecialnewborn the EveryNewborn Action Planinterimtargets in allcountriesfrombaselinetoreach 50%in2020and75%2025,reflecting Coverage oftwoneonatalinterventions(neonatal resuscitation,KMC)scaled-up Coverage ofallinterventionsremainsconstant(2016) ASSUMPTIONS - Annex 1. coverage targets for each scenario are provided in Additional detailsaboutspecificinterventions and more specific to context. investments thatmightbeneededsincetheseare did notincludeadditionalspecificinfrastructure provided inBhutta etal. 2014 (2) facility costs, andotherinputs (further detailsare in terms ofpeopletime, commodities, amortized of thehighercoverage for selected interventions the incremental running costbetween 2014 and2025 approach for each Countdown countryto estimate were used(2). The analysisusedaningredient-based with othermulti-countrycostingwork published, Lancet Every Newborn series, which were consistent For thisreport thecostinganalysispublishedinThe models andprojections. from theUNAIDSreference group onestimates, of world populationprospects. HIV/AIDStrends are the United NationsPopulation Division2017 revision lation growth andtotal fertility, follow projections in 2017–2030. Demographic parameters, such aspopu- impact was estimated ineach countryfor theperiod 81 countries (Table 6.5). For each scenario, health A setoffive scenarios was created for each ofthe from nationallyrepresentative surveys. applied ifcountry-specific data were not available and child healthindicators, withproxies ormedians of interventions was drawn from standard maternal .Ti calculation ). This CHAPTER 6 . Immediate action is needed is action . Immediate and that health-care providers are continually The standards and principles of care for emergency trained and mentored. or humanitarian settings remain the same as for • Provide and monitor inpatient care for appropri- non-emergency settings. They include heightened ate thermal management; infection prevention attention to improved access to quality services protocols and practices; the availability of anti managed by competent providers; awareness and biotics and dosage instructions; optimal newborn reduction of discriminatory care practices; and nutrition support; and the safe delivery of oxygen ensuring that safe referral transport systems are in and phototherapy when needed. place (especially critical in conflict zones). Inform • Improve data collection efforts to increase under- newborn care, country stakeholders need to plan for, and standing of where, when and why newborns are invest in, inpatient care if they are to improve newborn dying – and how this connects to care delays – as outcomes further, and avoid delays in meeting global and a priority for context-specific community and national targets. To move in this direction, countries need health system strategies. to view neonatal care as inextricably linked to mater- • Establish or refine HMIS to track and influence nal care. They should ensure that all newborns receive human resource decisions, so that the right essential newborn care, so that those who are small health-care providers with the right competencies and sick are immediately identified and referred to the are available at the right level of care. appropriate level of care. Countries can start by developing a network of facilities for special newborn care at the Innovate secondary level, which is potentially linked to a higher • Identify and procure diagnostics and equipment level of care. Special newborn care can be deployed in that are affordable, safe, effective and appropriate tandem and as part of quality obstetric care. This is also for use in low-resource settings. affordable and achievable for LMICs. • Test innovative parent/community and health-care provider partnership models to expand access to Countries that intend to initiate special and intensive and use of facility-based services and post-dis- newborn care efforts should identify their starting point charge follow-up care. and apply historical lessons learned. These include the need to avoid harm to the newborn when new technolo- Strategic objective 2: Improve the quality gies and interventions are introduced, as well as to avoid of maternal and newborn care unnecessary separation of mothers and newborns. As detailed in Chapter 2, most births now occur in health-care facilities. This offers a unique opportunity over Invest the next decade to reach women and newborns with • Develop or expand national Every Newborn improved care. To take full advantage of this opportunity, Action Plan strategies and/or action plans to however, health system investments need to be more include inpatient newborn care and allocate ade- intentionally focused on quality. High-quality care is quate financial resources to implement the plan. crucial for newborns to survive but is also imperative to • Design and invest in facility networks for inpatient minimize disabilities and ensure they thrive. newborn care that are backed by functional referral and communication systems and processes. These Quality improvement begins in the special newborn care can be designed to harmonize with BEmONC and unit with, for example, active parent engagement, safe CEmONC facility networks. oxygen use and infection prevention. Long-term disabilities • Assess available maternal and newborn care ser- – largely preventable – are a strong indicator of care quality. vices for populations in humanitarian settings; work To manage disabilities and limit their negative impact in partnership with local governments, civil society and international organizations to strengthen services based on actual and projected needs. Create a hospital environment that actively welcomes and engages parents in the care of their Implement newborn. Avoid unnecessary separation of parents • Ensure international newborn care standards and and other caretakers from the inpatient newborn. guidelines are adapted and available in facilities

119 120 SURVIVE AND THRIVE: Transforming care for every small and sick newborn support thatistiedtoearlychildhood development. over timedemandsfollow-up careandcommunity-based • • Innovate • • • Inform • • Implement • • Invest

cally designed for low-resource settings. health-care technologies, includingthosespecifi - approaches andcost-effectiveservice-delivery Design, testandscale-upnew andinnovative and burn-outofhealth-careproviders. ate theexperience of careandtoprevent distress continuous education,andidentify ways toevalu- clinical staff, including coaching, mentoringand innovativeEstablish approaches tomotivate for earlychildhoodcare andservices development. disabilities, tobetter assesstheimpact ofinpatient Track longer-term outcomesfor newborns with definitionsand using standard research.feasibility Refine and services. validate theseindicators engagement, acrossthespectrum ofinpatient ofcare,includingfamily content andquality Develop indicatorstoreflect accuratelythe within 24hours. deaths tocols includingnotificationofneonatal MPDSRsystemsEstablish/strengthen andpro- and clinicalstaff. compassionate bereavement carefor parents newborns and whoaretoofragiletosurvive, that supportsdignified andpain-freedeath for Encourage a facility ethosandenvironmentEncourage afacility harm tothenewborn. promote parentengagementandminimize advance provider skillsandcompetencies, Deploy quality-improvement approaches that and beyond. care providers andparents,bothinthehospital work tosupportthecareofnewborns by health- should alsoprovide thelegalandpolicyframe- careforhigh-quality allnewborns inneed. These accessto of caretoensurenon-discriminatory and regulationsaroundthenewborn continuum orupdateevidence-basedEstablish laws, policies family memberstocarefor theirnewborn. facilitates thefullparticipationofparentsandother to delivercare;andthattheclinicalspace quality equipment, commodities,suppliesanddiagnostics Ensure each levelstaff, ofcarehasthenecessary

ability andtransparency.ability need for leadershipandgoodgovernance tobuildaccount- facility-based newborn care.Centraltothisagendaisthe are essentialtoensurefamilies canaccessmorecomplex level,progress atcountry financialprotectionmechanisms accelerating progresstotheSDGtarget. To accelerate fewer 000 mately 500 gapand deaths,closingtheequity deaths,itwould84% ofallneonatal resultinapproxi- population withincountriesthataccountfor morethan deathastherichestsame riskofneonatal 20%ofthe As highlightedinChapter2,ifallhouseholdshadthe likely toexperience accessbarriers. of theavailability ofUHC,aspoorerfamilies aremore negative consequences.Newborn deathisanindicator gender, andcarecoverage atbirthhave significantand surrounding householdwealth, placeofbirth,newborn whether thenewborn isaboygaps orgirl.Equity ing onwherethebirthoccursand,insomecultures, The riskofdyingasanewborn varies greatlydepend- and newborn to reduce inequities Strategic objective 3: Reach every woman • • Inform • • Implement • • Invest

are especially vulnerable in some populations. are especiallyvulnerableinsomepopulations. access tocare,includingfor female newborns who Eliminate socialandfinancialbarriers thatlimit nomic profile. andsocioeco- less ofplaceresidence,ethnicity forinterventions smallandsick newborns regard- guarantee accesstoacomprehensive package of including financialprotectionmechanisms that Develop policiesonUHC, andenactcountry to inpatientand post-discharge follow-up care. health system, which access promote equitable text-specific action plans for communitiesandthe to design con- Use nationalandsubnational data toreduceidentified targets gaps. equity of newborns national whoare dyingandestablish Investigate thesociodemographiccharacteristics or informal settlements facilities. hospital to static and strengthenthereferral process fromcamps tings canadequatelyrespondtoprojectedneeds, set- inhumanitarian Ensure health-careservices creating orexpandingnursingcadre. aneonatal vation andretentionofskilledpersonnel,including andthedistribution,moti- education andtraining, development ofthehealthworkforce thatcovers Design andimplementacomprehensive planfor CHAPTER 6 . Immediate action is needed is action . Immediate Innovate • Support implementation research to understand which programmatic interventions work, and why, and to refine services including post-discharge home visits by community health workers and women’s groups. • Design new finance schemes including forms of prepayment and pooled funding to protect families from catastrophic out-of-pocket expenses, and to ensure equitable access to services for poor and marginalized families.

Strategic objective 4: Harness the power of parents, families and communities Countries will increasingly embrace family-centred care. As part of this, they will engage and empower families and communities as active participants and partners in the design, management and delivery of health care. This will cover not only the stay in hospital but also after discharge as they provide nurturing and developmen-

tally supportive care. Families and communities can © Amy Fowler / USAID also be powerful change agents for improved health- care services and can serve as a bridge from formal facility settings to home-based or community-based Inform follow-up care. • Engage affected parents and families to monitor inpatient newborn care services, as well as long- Invest term developmental care for those with more • Establish policies, laws and regulations specific needs. that support the newborn and are designed • Develop, validate and contextualize tools that to promote partnerships and coalitions measure the types of support that parents, fami- among parents, families and the health- lies, and newborns receive. care system. • Educate and engage men to understand the • Engage the private sector to support multimedia needs, risks and danger signs of pregnancy, child- communication campaigns to change social birth and the postnatal period. norms, promote zero tolerance for preventable Innovate newborn mortality, and advocate for optimal • Consider and test telemedicine and digital tools care-seeking behaviours. to support parents in the care of their newborns. • Involve patient/parent representatives in the Implement design of new products, programmes and • Promote family-centred care principles in the care research proposals. of small and sick newborns. • Design and implement campaigns to raise Strategic objective 5: Count and track awareness about the care needs of small and sick every small and sick newborn newborns and the best ways to support affected Too little information is currently available on small and families. Deploy social behaviour communication sick newborns, especially in LMICs and humanitarian and advocacy in partnership with parent/commu- settings. To address this, it will be necessary to update nity coalitions. the way health systems identify, track and measure • Connect community health workers with local small and sick newborns. Data should be collected at organizations, including parent groups, to broaden every level of care, with a clear process for moving that community outreach and identify newborns who data from the individual, community and facility levels may need long-term or developmentally support- up to the district, national and global levels. A feedback ive care. loop should be in place to ensure that lessons learned

121 122 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

of prematurity. newborns for complications,such asretinopathy Use multi-domaintoolstomonitorat-risk patterns ortrends. order toidentifyandrespondmortality gender equity, andby birth weight groupsin Track NMRby gender, for insightsintocareand registration. settings,humanitarian usingbirth(anddeath) Count everynewborn inallsettings, including national HMIS. Support theuseofvalidated indicatorsin records linkeddatasets. toperinatal inpatient Design andusestandardizedneonatal logistics, thatcanbeintegratedwiththe routine systems, such ashumanresourcesand Support long-terminvestment infunctionaland and toshaperesourcepriorities. as toevaluate referral processesandpathways from theparentandprovider perspective) aswell newborn care(includingtheexperience ofcare readiness andhealthoutcomesofinpatient Identify, refineordevelop toolstoassessservice national HMIS.

that allnewborns andtheirfamilies areabletoaccess the be prevented by refining existing systems andensuring large proportionofnewborn would deathsanddisability sive for countries withless-developed healthsystems. A care they requiredoes notneedtobeprohibitively expen - developmental andpsychosocial needs,yet providing the Small andsick newborns have awide rangeofclinical, tions; professional associations;andcommunities. organizations; internationalagencies;academicinstitu- (including parentgroups);nongovernmental civil society stakeholders fromhealth,financeandotherministries; policy discussionsonnewborn healthandshould engage (10–12). These efforts should beviewed asintegralto family leave orlegislationto support breastfeeding providers arealsoneeded,such aspoliciesonextended families, communities,institutions andhealth-care Policies thatpromotepartnerships between parents, topay. regardlessofanability entitlement toservices, strengthened. Specificlaws shouldarticulateastatutory legislative frameworks andstructures tobeassessedand In thecontext ofnewborn health,thisrequiresexisting theCRCmost notably (9). with internationalanddomestichumanrightsstandards, groups such asmigrants andrefugees–bealigned borns –includingthosebelongingtothemostvulnerable forshould assurehealthsecurity women andtheirnew tion; andtransparency. A country’s laws andregulations participa- law; accountability; humanrightsandequity; structures, groundedinkey principlessuch asthe rule of goodgovernanceobligated toestablish processesand care, includinginemergencysituations, countriesare effective, for newborn services andsustainable quality ity, andracial,ethnicreligious groups). To provide specific groups(such as women, personswithdisabil- from degradingtreatment;andtherightsprotecting right tolife,thebefree andequality); liberty these rights. These includegeneralrights(such asthe protective andsupportive legalenvironment toensure same extent asallotherpersons,sothereshouldbea Newborns areprotectedby humanrightslaws tothe and policyenvironment A protective legal, regulatory • • delays ordisabilities. supporting thoseathighestriskofdevelopment andtoguidecaredelivery,opment interventions metricstotrackEstablish earlychildhood devel- healthneeds. opmental of follow-up carefor ongoingnutritionalanddevel- indicatorstoevaluateEstablish theeffectiveness - CHAPTER 6 . Immediate action is needed is action . Immediate care they need. This health-care transformation should be 76 commitments made from 2015 to 2017 (25% of all approached in a way that is rights-based and family-cen- made) referenced the reduction of neonatal mortality in tred, and focused on quality, equity and dignity. line with the Every Newborn Action Plan. A special analysis conducted by the Partnership for Maternal, Newborn Research and data priorities to guide change and Child Health (PMNCH) for this report found that The process of collecting and using data must be made a nearly one third of these commitments were made by matter of routine if it is to advance newborn care in low-re- governments, one quarter by civil society organizations source settings. Accurate and consistent population-based and nongovernmental organizations, and roughly one fifth and facility-level data are needed to enhance understand- by the business community. Thirty-nine percent were ing of health-care service readiness and to guide change. financial commitments for maternal, child and adolescent health targets. High-quality research is also needed. While a great deal can be learned from successes in high- and middle-in- Based on the 2017 Every Woman Every Child progress come settings, this evidence requires adaptation to report, the PMNCH analysis found that a total of seven low-resource settings. Context-specific data will provide commitments reached newborns with service delivery accurate and nuanced insights into, and validation of, activities that included: breastfeeding support; neonatal the health needs of target populations. Shared learning intensive and emergency care; postnatal care; commu- within and across countries can then inform advocacy nity engagement and capacity building; and improved and policy change and facilitate safer, more effective midwifery services (13). Unfortunately, these commit- scale-up of special and intensive care services and ments only reached 5 million newborns – just 4% of all systems for newborns. beneficiaries reportedly reached by those who responded to the questionnaire.1 A far larger set of commitments is In this report, the Description, Discovery, Development and needed to accelerate progress and effect change. Delivery framework is used to highlight examples of key research priorities. This can inform the design and delivery Fortunately, progress can be achieved in many ways – of care, and ultimately benefit small and sick newborns. small and large. Illustrative priorities include issues relevant to general inpatient newborn care, special and intensive newborn All stakeholders in health and sustainable development care and care in humanitarian settings, as shown in Table should consider their own potential for action, including 6.6. Table 6.6 also highlights data and research priorities such options as: collaboration with other stakehold- related to follow-up care, with a specific look at priorities ers; raising public awareness; funding and investment; for early childhood development. Where feasible, mothers, sharing skills and expertise; crafting policies and regu- other parents and community representatives should be lations; finding ways to innovate; conducting outreach; included in research design and monitoring processes. mentoring community health workers; and advocating on behalf of parents and families. It takes commitment Considerable commitment will be needed over the next If appropriate action is taken globally, small and sick new- 11 years to eliminate the burden of newborns who die borns can and will survive and thrive as future productive from preventable causes, and to support their develop- members of society. With strategic partnerships and ment across the life course. It is a commitment of polit- innovative approaches, the international community can ical will, funds, resources, time, focus and dedication. transform all aspects of neonatal care, from its availabil- Collectively, as global citizens – and as individual nations ity and quality to its uptake and affordability. – we stand to gain so much from the promise of generations filled with healthy and productive people. This requires all stakeholders – governments and partners, competent health-care professionals, professional In addition to urging accelerated progress, the Every associations, private sector organizations, researchers, Woman Every Child movement has called for increased empowered parents, and engaged communities – to commitment and better alignment across sectors and work together. Everyone has a role to play to ensure a among partners. The movement reported that a total of thriving next generation.

1 The 2017 EWEC progress reporting questionnaire for non-state commitment makers was sent to 176 nongovernmental commitment makers and received a 60% response rate (105 in total). Hence, this is very likely an underestimate of the number of newborns reached.

123 124 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Table 6.6Dataandresearch prioritiesfor improved newborn care Research aim newborn care intensive Special and newborn care For allinpatient special and intensive care special andintensive health-care resourcesfor inform theprioritizationof and referral processesto Assess servicereadiness prevention planning andtomonitor data toinformhealth-care care.Use more intensive which conditionsrequire the diseaseburdenand better of understanding Using data,establisha inpatientservices intensive access to,specialand the availabilityof, and assess Comprehensively use ofservices intervention coverage and obtain dataonmortality, household surveysto Undertake periodic competency gaps any existingprovider and to explore/understand who isproviding careand assessments tounderstand Conduct humanresources imbalance indicate apotentialgender hospital admissionsdata in populationswhere in care-seekingbehaviours Explore genderpreference and sick newborns accessing careforsmall populations arenot whyto understand certain Conduct socialresearch newborns systemsfor delivery design improved service and infrastructure)to framework, and legislative health, financing,policy human resourcesfor challenges (including Identify healthsystem of newbornsneedingcare magnitude anddistribution estimations ofthe to establishreliable Implement gap analyses health systemstrategies establish context-specific related caredelays,to newborns aredying,and where Understand advance definitions understand determinants, and qualitative research to Descriptive epidemiology the problem Characterize DESCRIPTION Find newsolutions DISCOVERY level ofcare triaged totheappropriate to ensurenewbornsare Design andtesttriagetools resource settings appropriate forlow- gestational agethatare approaches tomeasure Explore andidentify infections to managenewborn Develop newantibiotics for newborninfections point-of-care diagnostics Design andtestsimpler, low-resource settings that areappropriatefor health-care technologies cost-effectiveinnovative, Explore anddevelop diagnostics interventions ornew medicines, preventive Development ofnew interventions Improve existing DEVELOPMENT engagement safe andeffective parent newborn care,including for moreadvanced specifically designed approaches thatare Test quality-improvement deterioration) use, monitoringfor feeding, antibiotic resource settings (e.g. advanced careinlow- approaches formore care innovations and of emergingnewborn- Establish theeffectiveness and bereavedfamilies congenital abnormalities, newborn, newbornswith who haveasmallandsick and newborns,families respectful careformothers for associated indicators interventions and Develop andvalidate at scale ofqualityservices delivery avoid knownbarriers to research tohelpcountries Conduct implementation existing interventions Adapting orimproving access to interventions Advance equitable DELIVERY systems andapproaches innovations inreferral inpatient careincluding successful modelsof inform scale-upof research toadaptand Conduct implementation care access toandqualityof equipped –tooptimize should bestaffed and be located,howthey where theseunitsshould organization ofservices– Explore innovations inthe age) birth weight,gestational surveillance andresponse, neonatal deaths,perinatal and quality, recording registration, coverage care (birth anddeath accountability fornewborn informationand drive to gather datathatwill mechanisms designed Test innovative systems andinstruments routine datacollection their integrationinto and indicators delivery Evaluate nationalservice human resourcegaps in responsetoidentified shifting andtask-sharing, strategies, includingtask- Test newworkforce settings low- andmiddle-income inform bestpracticesin inpatient newborncareto family engagement during that promoteparent/ Assess modelsofcare scalability effectiveness and settings todetermine low- andmiddle-income that promoteUHCin Evaluate modelsofcare for allnewborns early care-seekingandcare approaches topromote and communication social behaviourchange research oneffective Conduct implementation approaches scale through innovative Delivery ofinterventions at CHAPTER 6 . Immediate action is needed is action . Immediate Table 6.6 Data and research priorities for improved newborn care (continued)

DESCRIPTION DISCOVERY DEVELOPMENT DELIVERY Characterize Find new solutions Improve existing Advance equitable the problem interventions access to interventions

Special and Informed by data on Identify and test innovative Evaluate strategies to intensive service readiness, establish, training methodologies prevent and manage newborn care strengthen or scale-up for health workers, hospital-acquired high-quality special and including specialized infections, including (continued) intensive care for small and skills in neonatal nursing, antibiotic choice sick newborns physiotherapy and Track morbidity and occupational therapy Conduct newborn death disability outcomes, reviews and assess data Implement clinical research especially where neonatal by gender to understand on optimized feeding and intensive care is being gender equity in newborn oxygen provision expanded care Test methodologies to Gather population-based develop and deploy a information on organisms neonatal nursing cadre that cause newborn with training optimized infections to inform for the setting based on effective prevention and burden of disease and treatment specific population needs Establish surveillance systems to track congenital abnormalities

Follow-up care/ Establish data regarding Test models of care to Test newborn biometrics Evaluate community-based early childhood the burden of disability determine if community for low-resource settings, models of care to ensure development for survivors of neonatal health workers/para- to improve tracking of newborns are receiving sepsis professionals can be newborns during inpatient required post-discharge care trained to deliver early care and at follow-up Explore and establish childhood development Design and test electronic affordable and scalable interventions* medical records to improve strategies for uptake Explore cost-effective patient tracking and long- of early childhood parenting interventions to term follow-up development interventions promote early childhood across the continuum from development* birth to early childhood Explore the most cost- effective parenting interventions to promote early childhood development*

Humanitarian Establish the additional Evaluate the effectiveness Test diagnostics to improve Develop and validate settings burden of stillbirth in of perinatal audits in identification of neonatal strategies to identify different emergency reducing the incidence of complications in health preterm newborns at Priority situations (e.g. conflict, adverse outcomes related facilities the community level by acute or protracted, to acute intrapartum events health workers and family research Test the feasibility, cost and natural disaster); establish members topics** Develop, test and validate effectiveness of setting up the additional burden simpler clinical algorithms newborn care corners in Determine the safety, of neonatal mortality (recognition and mobile clinics, first referral feasibility, effectiveness in different emergency management) for infants units and district hospitals and cost of managing situations who require resuscitation severe neonatal infections Identify new interventions Explore the incidences, at birth, and determine if at or close to home (e.g. to prevent transmission of causes and outcomes these algorithms meet the requiring injectable infections during childbirth of umbilical and skin need for resuscitation at antibiotics) (e.g. chlorhexidine vaginal infections among birth douche and immune Evaluate different methods newborns in emergency Develop and test low- modulators such as zinc for of behaviour change settings as well as the cost, robust, simple fetal mothers) to overcome harmful incidence of neonatal heart monitors that are practices and promote sepsis Explore simpler, cheaper more user-friendly than positive cultural and technology to improve Identify risk factors the Pinard stethoscope; social norms supportive care of for neonatal sepsis in explore if the use of such newborns who require Evaluate the feasibility and emergency settings and a device improves fetal oxygen (such as robust effectiveness of quality explore interventions for heart rate monitoring pulse oximeters, oxygen improvement approaches mothers and newborns and reduces intrapartum condensers, low-cost in hospitals stillbirth and asphyxia- CPAP, etc.) and determine related outcomes their impact on mortality reduction and outcomes

125 126 SURVIVE AND THRIVE: Transforming care for every small and sick newborn Table adaptedfrom:Born Too Soon:theglobalactionreportonpretermbirth. Health. 2014;8(1):8. ** MorofDF, Kerber K, Tomczyk incomplexemergencies:setting B, survival humanitarian etal.Neonatal anevidence-based research agenda.Conflictand Health. 2016;4(12):e887–e889. * Dua T, Tomlinson M, Tablante E,etal.Globalresearch prioritiestoaccelerateearlychild development development inthesustainable era.The Lancet.Global Table 6.6Dataandresearch prioritiesfor improved newborn care topics research Priority settings Humanitarian to impact Typical timeline (continued) ** Near-term (2–5years) conditions to distinguishthese combination ofmarkers reliable clinicalmarkers/ meningitis; designandtest pneumonia, sepsisand infections thatare proportion ofneonatal Determine therelative the problem Characterize DESCRIPTION Find newsolutions DISCOVERY Long-term (5–15years) interventions Improve existing DEVELOPMENT Mid-term (5–10 years) to home antibiotics) atorclose (e.g. requiringinjectable severe neonatalinfections and costofmanaging feasibility, effectiveness Determine thesafety, (continued) access to interventions Advance equitable DELIVERY Near-term (2–5years) humanitarian settings and newborncarein respectful maternal mistreatment andpromote designed toprevent Evaluate interventions emergency support duringanacute for provider trainingand cost-effective approaches Identify thebestandmost CHAPTER 6

REFERENCES needed is action . Immediate

1. UNICEF. Every child alive: the urgent need to end 8. UNICEF, WHO. Tracking progress towards universal newborn deaths. Geneva: United Nations Children’s coverage for reproductive, newborn and child Fund; 2018. health: the 2017 report. Washington DC: United 2. Bhutta ZA, Das JK, Bahl R, Lawn JE, Salam RA, Paul Nations; 2017. VK, et al. Can available interventions end preventable 9. UN. General comment No. 15 (2013) on the right deaths in mothers, newborn babies, and stillbirths, of the child to the enjoyment of the highest attain- and at what cost? Lancet. 2014;384(9940):347-70. able standard of health (art. 24). CRC/C/GC/15. 17 3. The Lives Saved Tool (LiST) website (http://www. April 2013 (https://www2.ohchr.org/english/bodies/ livessavedtool.org/, accessed 27 February 2019). crc/docs/gc/crc-c-gc-15_en.doc, accessed 4. Boschi-Pinto C, Black RE. Development and use 27 February 2019). of the lives saved tool: a model to estimate the 10. Heymann J, Sprague AR, Nandi A, Earle A, Batra P, impact of scaling up proven interventions on mater- Schickedanz A, et al. Paid parental leave and family nal, neonatal and child mortality. Int J Epidemiol. wellbeing in the sustainable development era. Public 2011;40(2):520–1. Health Rev. 2017;38:21. 5. WHO, UNICEF, UNFPA, World Bank, UNFPA. Trends 11. Greenfield JC, Klawetter S. Parental leave policy as in maternal mortality: 1990 to 2015. Geneva: World a strategy to improve outcomes among premature Health Organization; 2015. infants. Health Soc Work. 2016;41(1):17–23. 6. UN IGME. Levels & trends in child mortality: report 12. Rollins NC, Bhandari N, Hajeebhoy N, Horton S, 2017. Estimates developed by the United Nations inter- Lutter CK, Martines JC, et al. Why invest, and what it agency group for child mortality estimation (UN IGME). will take to improve breastfeeding practices? Lancet. New York: United Nations Children’s Fund; 2017. 2016;387(10017):491–504. 7. Blencowe H, Cousens S, Jassir FB, Say L, Chou D, 13. EWEC and PMNCH. Progress in partnership: 2017 Mathers C, et al. National, regional, and worldwide progress report on the every woman every child global estimates of stillbirth rates in 2015, with trends from strategy for women’s, children’s and adolescents’ 2000: a systematic analysis. Lancet Glob Health. health. Geneva: World Health Organization; 2017. 2016;4(2):e98–e108.

127 128 SURVIVE AND THRIVE: Transforming care for every small and sick newborn GLOSSARY Intensive newborn care Inpatient care Hypoglycaemia Humanitarian setting Haemoglobin Family-centred care Family Essential care Developmentally supportive care pressure therapy (alsoCPAP) Continuous positive airway Congenital anomalies Broad-spectrum antibiotics Birth complications Bilirubin Apnoeic episodes Anaemia TERM in ahigher(usually tertiary) levelfacility. provision ofintermittent therapy. positive-pressure carecanonlybe provided Intensive Key inpatientcare(24/7)practicesfor verysmallandsick newborns,includingthe Care ofanewbornpatientwhose conditionrequiresadmissiontoahospital. A deficiencyofglucoseinthe bloodstream. famine, andoften involves populationdisplacement. This canbetheresultofeventssuch epidemicsor asarmedconflicts,naturaldisasters, health, safety, securityorwell-beingofacommunityotherlarge groupofpeople. A setting inwhich aneventorseriesofeventshasresultedinacriticalthreattothe four subunits,each containinganironatomboundtoahaemgroup. A redproteinresponsiblefortransporting oxygen intheblood.Itsmolecule comprises information sharing;participation; andcollaboration. and evaluation. The principlesoffamily-centred careinclude:dignityandrespect; tosupport familiesandhealth-careproviders mothers, health-careplanning,delivery An approach thatpromotesamutuallybeneficialpartnership among tocaredelivery breastfeeding. and, inthecaseofmothers, andfamilymembers. All areinauniquepositiontoensurenurturingcaregivers care For toanewborn’s thisdocument,familyrefers parents,legal guardians,primary oflife,whetherinthehealthfacilityorathome. hours during thefirst Key routinepracticesinthecareofallnewborns,particularly atthetimeofbirth and 2000) Neonatal Nurses, stabilization ofphysiologic andbehaviouralfunctioning.(National Association of Care ofaninfanttosupport growthanddevelopment,whileallowing positive have sleepapnoea. normaloxygen saturationlevels.Itmayalsobeusedfornewbornswho unable tokeep A treatmentmethodusedfornewbornswhohavemildrespiratorydistressandare at birth orlaterinlife.(WHO) thatoccurduringintrauterinelife andcanbeidentifiedprenatally,metabolic disorders) Congenital anomaliescanbedefinedasstructuralorfunctional(e.g. Also knownasbirth orcongenitalmalformations. defects, congenitaldisorders negative, orany antibioticthatactsagainst awiderangeofdisease-causingbacteria. andGram- Antibiotics thatactonthetwomajorbacterialgroups,Gram-positive neonatal intrapartum-related complications(orevents). enough duringthebirth processtocausephysical harm,usuallytothebrain. Also called complications which ofoxygen toanewbornthatlastslong resultfromthedeprivation Also knownasperinatalasphyxia, neonatalasphyxia orbirth asphyxia; varying red bloodcellsandexcretedinbile. A yellow-orange compoundthatisproducedbythebreakdownofhaemoglobinfrom hypotonia.cyanosis, pallorand/ormarked (American Academy ofPediatrics) 20 secondsorlonger, orashorter respiratorypauseassociatedwithbradycardia, Infant apnoeaisdefinedasanunexplainedepisodeofcessationbreathingfor and pregnancystatus.(WHO) is insufficient tomeetphysiologic needs,which varybyage,sex,altitude,smoking A conditioninwhich thenumberofredblood cells ortheiroxygen-carrying capacity DEFINITION AND USAGE IN THIS REPORT GLOSSARY

TERM DEFINITION AND USAGE IN THIS REPORT

Intravenous Existing or taking place within, or administered into, a vein or veins.

A newborn who weighs less than 2500 g (i.e. up to and including 2499 g) regardless of Low-birth-weight (also LBW) gestational age.

A class of antibiotics used to treat a specific infection when the causative organism Narrow-spectrum antibiotics is known. It will not kill as many of the normal microorganisms in the body as broad- spectrum antibiotics.

A device used to deliver supplemental oxygen or increased airflow to a newborn patient Nasal cannula in need of respiratory help.

Feeding through a tube that is passed through the nose and down the nasopharynx and Nasogastric tube feeding oesophagus into the stomach. It is a technique to be used when the newborn is unable to suckle at the breast.

A medical condition where a portion of the bowel dies. It typically occurs in newborns who may be premature, small and sick, and are not fed human milk. Symptoms may Necrotizing enterocolitis include poor feeding, abdominal distension, decreased activity, blood in the stool or vomiting of bile.

A clinically defined syndrome characterized by disturbed neurological function in the earliest days of life in an infant born at or beyond 35 weeks of gestation. It is manifested Neonatal encephalopathy by a reduced level of consciousness or seizures, often accompanied by difficulty with initiating and maintaining respiration and depression of tone and reflexes.

Perinatal asphyxia, neonatal asphyxia or birth asphyxia is the medical condition resulting from deprivation of oxygen to an infant that lasts long enough during the birth Neonatal intrapartum-related process to cause physical harm, usually to the brain. Also called birth complications. complications (or events) Other intrapartum-related complications may include head trauma, limb fractures, haematomas, bruising, etc.

Neonate An infant who is in the first 28 days after birth (also see Newborn).

The colloquial term for an infant (neonate) who is in the first 28 days after birth. Newborn Newborn is used predominantly in this report.

A medical condition or disease that is not caused by infection. Noncommunicable Noncommunicable disease diseases tend to be of long duration and may progress slowly.

In this report, parents refers to: • individual parents, legal guardians or primary caregivers of a newborn who is Parents born preterm, small for gestational age, with an illness, or who suffers from a birth complication and requires hospitalization during the neonatal period; • persons who represent or express views on behalf of parents of preterm or sick newborns, such as other family members or representatives of parent organizations.

An approach to care that consciously adopts the perspectives of individuals, carers, families and communities, as participants in, and beneficiaries of, trusted health systems that are organized around the comprehensive needs of people rather than People-centred care individual diseases, and respects social preferences. For this report, the person at the centre of care is the newborn who receives treatment by health-care providers, mother, father, caregivers or a combination.

Defined as childbirth occurring at less than 37 completed weeks or Preterm birth 259 days of gestation. (WHO)

129 130 SURVIVE AND THRIVE: Transforming care for every small and sick newborn GLOSSARY (also UHC) Universal healthcoverage Special newborn care Small andsick newborn Small newborn (also SGA) Small for gestational age Sick newborn Severe neonatalinfection Sepsis Retinopathy ofprematurity TERM (continued) DEFINITION AND USAGE IN THIS REPORT suffering unduefinancial hardship. Ensuring everyonecanaccessthequalityhealthservicestheyneedwithout can onlybeprovided inahealthfacility. include theprovision ofintermittent therapy. positive-pressure Special newborncare jaundice; preventionandtreatmentofinfection.Specialnewborncaredoesnot provision ofwarmth;exclusively): support forfeedingandbreathing;treatmentof Key inpatientcare(24/7)practicesforsmallandsick newborns,including(butnot from abirth complication, andrequireshospitalizationduringtheneonatalperiod. A newbornwhoisbornpreterm,smallforgestationalage,hasanillnessorsuffers A newbornwhoispretermand/orlow-birth-weight, orsmallforgestationalage. preterm orfull-term. compared withagender-specific referencepopulation. AnSGAnewbornmaybe A newbornwhosebirth weight isbelowthe10th percentileforgestationalage, A newbornwhorequiresmedicalcare. neonatal sepsis,meningitisandpneumonia. Severe bacterialandviralinfectionsinnewbornswhich canresultinclinicallydefined cause sepsis. injures itsowntissuesandorgans. Any typeofinfectiouspathogencanpotentially A life-threateningconditionthatariseswhenthebody’s responsetoaninfection vessels intheeyesofprematureinfants. A potentiallyblindingdiseasecausedbyabnormaldevelopmentofretinalblood

ANNEXES

ANNEX 1: Lives Saved Tool (LiST) analysis methods and results

In 2014, a study in The Lancet Every Newborn series saved by closing the quality gap in care and ensuring that systematically reviewed interventions across the contin- all women and newborns receive effective care during uum of care that impact newborn mortality and health births in health facilities. and stillbirths. It also reviewed various delivery platforms. It then modelled the impact and cost of scaling-up LiST was used to estimate impact and the cost of these interventions in the 75 countries with the highest increasing coverage of individual interventions from most burden of mortality (1). The results were first published recently reported levels for each country on stillbirth and in The Lancet Every Newborn series and then used in neonatal and maternal mortality (methods and details the Every Newborn Action Plan (ENAP) (endorsed by found in Bhutta, Das, Bahl, et al. 2014 (1)). LiST is a free the 2014 World Health Assembly in Resolution WHA and widely used software module that allows users to 67.10). Findings from the modelling exercise indicated compare the effects of different interventions on mater- that high coverage of interventions during pregnancy, nal, neonatal and child mortality and stillbirths, as well around the time of birth, and for small and sick newborns as on stunting and wasting. The modelling approach has would save nearly 3 million lives (women, newborns and been described (2), and the assumptions that underlie stillbirths) by 2025. The additional running cost for this the evidence-based platform are documented in peer- would be only US$ 1.15 per person in the 75 countries. reviewed literature. The analysis also considered how many lives would be For the current report, a similar analysis was conducted from June to August 2018 to assess the potential for saving newborn lives. The approach was closely aligned with that used by Bhutta, Das, Bahl, et al. (2014) (1). The following paragraphs provide an overview of the methodology and a comprehensive presentation of the results.

Methodology

LiST was used to model the impact of various scenarios of intervention scale-up in 81 high-burden countries tracked by the Countdown to 20301 collaboration. The sample represents most of the maternal deaths (96%) (3), neonatal deaths (89%) (4), and stillbirths (87%) (5) globally. All models were analysed using the Spectrum modelling system (version 5.71 beta 5) (6).

Description of modelled scenarios

A set of five scenarios was created for each of the 81 countries. For each scenario, health impact was estimated in each country for the period 2017–2030. Demographic parameters, such as population growth and total fertility,

131 132 SURVIVE AND THRIVE: Transforming care for every small and sick newborn to 2030,asthe endyear. from2016,constant baselineyear, asthestarting through newborn andchild remains health(MNCH)interventions 1. Baseline.Inthisscenario,coverage ofmaternal, each scenario areprovided in Table A1.2. A1.1 shows levels includedin ofcare;theinterventions forage targets each scenarioare described below. Table andcoverAdditional aboutspecificinterventions details on Estimates,ModelsandProjections (UNAIDS) (7). HIV/AIDS trendsarefromtheUNAIDSReference Group Division 2017 Revision of World Population Prospects. follow projectionsfromtheUnitedNations Population Table A1.1 Levels ofcareaccordingtoproxy distribution Table A1.2 Neonatallives thatcouldbesaved ifinterimENAPcoverage targetsareachieved FOR INTRAPARTUM INTERVENTIONS FOR POSTNATAL CAREINTERVENTIONS TOTAL Kangaroo mothercare Neonatal resuscitation Intervention Health-facility delivery 50–94% 30–49% 70–94% 50–69% 30–49% 0–29% 0–29% > 95% > 95% (%) (essential care) Primary 25% 50% 90% 33% 50% 90% 17% 0% 0% In 2020 72 200 31 600 40 600 - (BEmONC) Secondary 30% 20% 30% 15% 10% 0% 0% 0% 0% Level ofinpatientcare were assumedtobezero orwere drawn fromrecent obstetric care (CEmOC)) facility. Baseline values for KMC facility, ortertiary-level (i.e.comprehensive emergency ary-level (i.e.basic emergency obstetriccare(BEmOC)) only theproportionofbirths occurring ineitherasecond- (Table A1.1). was resuscitation scaled upfor Neonatal health-facility deliveries intothree levels ofinpatientcare were derived fromaproxy distribution, which categorized targets 50% in2020and75%2025accordingtotheENAP andKMC)wascitation scaledupinallcountriestoreach resus- coverage (neonatal interventions oftwoneonatal 2. Reaching interim coverage targets. Inthisscenario, (8). Forbaselinevalues resuscitation, neonatal 150 600 103 200 In 2025 47 400 (CEmONC) Tertiary 100% 100% 20% 60% 47% 20% 73% 10% 10% ANNEXES

linking studies conducted in a subset of countries with 5. Universal coverage. In this scenario, 29 evi- available data. Coverage for KMC in Bangladesh, Haiti, dence-based interventions that impact neonatal mortality Malawi, Nepal, Senegal and the United Republic of along the continuum of care were aggressively scaled Tanzania were estimated by combining nationally repre- up from current coverage to reach 95% coverage in sentative household surveys (i.e. demographic and health 2030. Any intervention already above the 95% target at survey (DHS)) with data from health-facility assessments baseline was held constant. Scale-up included maternal (i.e. service provision assessment (SPA)). interventions such as tetanus toxoid immunization and nutrition interventions such as calcium, balanced energy 3. Closing the quality gap with special care. In this protein, and multiple micronutrient supplementation scenario, coverage of health-facility based interventions among pregnant women. Folic acid fortification was was modelled to be available at the highest level of birth expanded in countries (9) with legislation to mandate care (i.e. 95% at CEmOC) in 2025 among all births cur- fortification of at least one industrially milled cereal grain rently occurring at a health facility. As such, the absolute (n=46); country-specific values were applied for baseline percentage of deliveries occurring in a health facility was if available (10). Intermittent preventive treatment in preg- kept constant from baseline (i.e. the overall percentage of nancy for malaria was scaled up only in countries with an deliveries occurring in a health facility was not increased); existing policy or WHO recommendation in place (n=35). rather the model assumed that 95% of deliveries would have access to CEmOC, shifting from the essential care The percentage of women giving birth in a health facility level and BEmOC to CEmOC level. Facility-based inter- was expanded to 95% in 2030 with scale-up of related ventions to reduce neonatal mortality included: antibiotics facility-based interventions (i.e. antibiotics for preterm for preterm premature rupture of membranes; clean birth premature rupture of membranes; clean birth practices practices for protection from hospital-acquired infection; for protection from hospital-acquired infection; manage- management of labour and delivery complications; and ment of labour and delivery complications; and immedi- immediate assessment and stimulation of the newborn. ate assessment and stimulation of the newborn). Use For KMC, coverage began from a baseline assumed to of antenatal corticosteroids was modelled to increase be zero or a country-specific level for six countries (listed in only a subset of upper-middle-income countries with in the previous paragraph) where recent linking studies more than 50% of births estimated to be in tertiary were conducted to estimate population-level coverage. care facilities (n=12). Comprehensive newborn care for Expansion of KMC followed a linear trend to reach 95% preterm and comprehensive newborn care to treat infec- of all health-facility deliveries in 2025. tion were scaled up to 95% in 2020 as the highest level of inpatient care. Chlorhexidine for newborn cord care 4. Closing the quality gap with intensive care. In this was scaled up only in countries identified as being in the scenario, coverage of health-facility based interventions implementation/scale-up phase (11) of chlorhexidine activ- was modelled to be available at the highest level of ities (n=12). Baseline for chlorhexidine was assumed to birth care (i.e. 95% at CEmOC) in 2025 among all births be 5% in this subset of countries, excluding Bangladesh.2 currently occurring at a health facility. The overall per- Promotion of breastfeeding and clean postnatal practices centage of deliveries occurring in a health facility was were included as community-based interventions in addi- not increased; rather care shifted from lower levels to tion to improved sanitation, handwashing and water con- CEmOC. Therefore 95% of facility-based deliveries would nection in the home. Oral rehydration solution, antibiotics have access to the following interventions: antibiotics for for treatment of dysentery, and zinc for treatment of preterm premature rupture of membranes; clean birth diarrhoea were included for curative care of sick children. practices for protection from hospital-acquired infection; management of labour and delivery complications; and immediate assessment and stimulation of the newborn. Results Comprehensive newborn care for preterm was scaled up from a baseline level of 25% of CEmOC births to Universal coverage 95% of all health-facility births by 2025. Comprehensive With universal coverage, an estimated 2.9 million lives newborn care to treat infection was similarly scaled up could be saved in 2030 in the 81 countries. This represents from a baseline level of 50% of CEmOC births to 95% of a 54% reduction with: 39% fewer maternal deaths; 68% all health-facility births by 2025. fewer neonatal deaths; and a 43% reduction in the number

2 Country-specific estimate applied for chlorhexidine coverage at baseline.

133 134 SURVIVE AND THRIVE: Transforming care for every small and sick newborn is mediatedby birthoutcomes such assmallforageorpretermbirthcontributingriskfactors. gestational isindicated byNote: Directimpactoncause-specificmortality “x”;indirectimpactisindicated by “Indirect”and Table A1.3 healthy neonate Care ofthe childbirth labour and Care during Pregnancy care nutrition care Preconception Packages Intervention listingfor scenarios:smallandsick newborn analysis Intervention protected frommalaria residual spraying –households Insecticide-treated netsandindoor Handwashing withsoap Water connection inthehome latrines ortoilets Improved sanitation–utilizationof Chlorhexidine Clean postnatalpractices Promotion ofbreastfeeding delivery labour and care for facility-based Health- Balanced energysupplementation (iron andmultiplemicronutrients) Micronutrient supplementation Iron supplementation Calcium supplementation Syphilis detectionandtreatment of malariaduringpregnancy Intermittent treatment preventive Tetanus toxoid vaccination fortification Folic acidsupplementation/ pre-term labour corticosteroids for Antenatal resuscitation Neonatal stimulation assessment and Immediate management delivery Labour and practices Clean birth membranes rupture of preterm premature Antibiotics for Neonatal pathway impact Indirect Indirect Indirect Indirect Indirect Indirect Indirect X X X X X X X X X X X X X X health-facility health-facility 2020, 75%of delivery in delivery in delivery coverage coverage (ENAP) Interim targets 50% of 2025 N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A the quality 95% health- delivery in delivery CEmOC to intensive gap with Scale up Closing facility care 2025 N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A (no intensive with special Closing the quality gap 95% health- delivery in delivery CEmOC to newborn Scale up facility care) care 2025 N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A N/A delivery to95% delivery (UNIVERSAL) Health-facility 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030 95% in2030

Universal coverage in 2030

ANNEXES

Table A1.3 Intervention listing for scenarios: small and sick newborn analysis (continued)

Closing the quality gap Closing with special Interim the quality newborn Neonatal coverage gap with care Universal impact targets intensive (no intensive coverage Packages Intervention pathway (ENAP) care care) (UNIVERSAL)

Thermal care X N/A N/A N/A N/A

50% of health-facility 95% of delivery in Case Kangaroo health-facility X 2020; 75% of N/A N/A management mother care delivery in health-facility for 2025 delivery in prematurity 2025 95% of Intensive care health-facility X N/A N/A N/A for prematurity delivery in 2025 Oral antibiotics for Care of the neonatal sepsis/ X N/A N/A N/A N/A small and sick pneumonia neonate* Injectable No change – No change – Case antibiotics for already at all already at all management X N/A N/A neonatal sepsis/ health-facility health-facility for neonatal pneumonia deliveries deliveries infection 95% of Intensive care for health-facility neonatal sepsis/ X N/A N/A 95% in 2030 delivery in pneumonia 2025

Oral rehydration solution X N/A N/A N/A 95% in 2030

Antibiotics for treatment X N/A N/A N/A 95% in 2030 of dysentery

Zinc for treatment of diarrhoea X N/A N/A N/A 95% in 2030

* Compared with the packages modelled for the newborn analyses conducted in 2014, assumptions about baseline coverage of component interventions for case management of prematurity and newborn infection have been revised. Coverage for thermal care and injectable antibiotics for neonatal sepsis/ pneumonia is assumed to be equivalent to the percentage of births occurring at a health facility as the standard default at baseline. N/A = Not applicable.

of stillbirths in 2030 (see Table A1.3). In the final target high-quality care for small and sick newborns, beyond basic year of 2030, packages of interventions contributing the preventive strategies and care in community settings, are greatest impact to prevent neonatal deaths include: those considerable and confirm the importance of this focus. provided as care for small and sick newborns (44%); care during labour and around the time of birth (36%); Conclusion: A total of 2.9 million lives of women and pregnancy care (11%); and care for the healthy newborn newborns could be saved in 2030, with an estimated 54% (9%). An important though ambitious part of the model of maternal and newborn deaths averted and stillbirths pre- relates to expanding comprehensive care for prema- vented. Interventions for small and sick newborns would ture births and newborn infection, which would save an account for an estimated 44% of newborn lives saved. estimated 540 400 and 202 300 newborn lives in 2030 at full scale-up. Countries will not achieve newborn mortal- Reaching interim coverage targets ity targets set out in the SDG agenda without improving The Every Newborn Action Plan sets interim coverage access to, and the quality of, neonatal care at this level. The targets for newborn interventions towards the ultimate gains estimated by providing these additional elements of goal of UHC by 2030. The authors of this report assessed

135 136 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Jonathan Hyams / Save the Children newborns, thisscenariowould avert anestimated46300 highest level ofcare(i.e.CEmOC)withintensive carefor in 2025receiveeffective high-quality atthe interventions newborn care.If95% ofallwomen givingbirthinfacilities of carereceived isinadequate for propermaternaland facility settings. An opportunity ismissedwhenthequality newborn carein andtertiary secondary of high-quality aspirational goalrelatestothescale-up An important special andintensive newborn care Closing the “quality ofcare” gap with as low as12 deathsper 1000 live births. toatleast mortality countries aimingtoreduceneonatal Newborn ofall (alsotheEvery nationaltarget) target average, thesecountrieswillalsoachieve theSDG3.2 of9deathsper1000target live birthsin2030.On they willsurpasstheglobalaverage Newborn Every health (includingspecialandintensive newborn care) coverage for ofhigh-impactinterventions newborn However,target. ifthesecountriesachieve universal per 1000 live birthsby 2030–well above theSDG3.2 81 countrieswould declinetoanaverage of18 deaths Following inthe mortality current trajectories,neonatal Reaching theSDGs special careinordertomeettheSDGs. tries willneedtoinvest inintensive careinadditionto newborns contribution;however, hasanimportant coun- Conclusion: Scalingupspecialcarefor smallandsick ing 6%ofallnewborn deaths. would save anestimated150 newborn 600 lives, avert- in2025for theseinterventions Meeting the75%target 2020 would save newborn anestimated72200 lives. to50%in resuscitation Scaling upKMCandneonatal (Tablein 2025accordingtotheactionplantargets A1.2). toreach interventions neonatal 50%in2020and75% how many lives would besaved by scalinguptwo deaths averted overall. This will influencetheestimated numberofdeaths,and ous portfolio comprised ofCountdown to2015 countries. resents approximately 20%fewer births thantheprevi- of birthsamongtheCountdown to2030countriesrep- China,Brazil,Mexico).populations (e.g. number The total tries arenolongerincluded, several representinglarge additional 13 countrieswere selected,however 7coun- does notrepresentanidenticalsampleofcountries. An The Countdown to2030group(n=81)presentedhere (n=75) were analysed asarepresentative globalsample. For thepriorwork, theCountdown to2015 countries of health-facilitybirthcare. accordingtotheleveldoes notassumethisheterogeneity current version oftheLiST model usedfor thisanalysis acrossdifferentinterventions health-facilitytypes. The incorporated differences ofcareby inthequality childbirth 2014 analyses, becauseearlierversions ofthemodelalso may appeartobemoremodestwhencomparedthe a baselinecoverage ofzero. The findingsinthisreport differsdelivery fromtheprevious work, which assumed tobeequivalentintervention tothelevel ofhealth-facility high-burden countries.Setting baselinecoverage ofthis same level deliveries ashealth-facility inthissampleof infection,of neonatal aremodelledtobeavailable atthe biotics, for example, which effective arevery for treatment tions inmortality. such Interventions anti asinjectable contribute assignificantly, reduc- toproduceconcomitant at baselinewillnotfeature asprominently, orappear to withcurrent highlevelstions, sointerventions ofcoverage change orexpansion incoverage for effective- interven of lifesaving Gainsarebasedontheoverall interventions. it isappliedtoestimatetheimpactofscalinguppackages There areseveral caveats for ofmodellingwhen thistype Limitations deathsavertednumber ofneonatal to28%. newborn careinadditiontospecialincreasesthe deaths andstillbirthsin2025.Providing intensive has thepotentialtoavert 19% ofmaternalandnewborn ofcaregapinfacilities Conclusion: Closingthequality 28% declinewithintensive careinterventions. deathsbyreducing neonatal about11% comparedwitha care), specialcarestillaverts deaths, neonatal 268900 antibioticsratherthanfullcomprehensive and injectable only specialcarefor smallandsick newborns KMC (e.g. deaths. When thesamescenarioislimitedtoproviding neonatal stillbirths,and667200 maternal deaths,248300 ANNEXES

REFERENCES

1. Bhutta ZA, Das JK, Bahl R, Lawn JE, Salam RA, Paul 6. Avenir Health. SPECTRUM wesbite (https://www. VK, et al. Can available interventions end preventable avenirhealth.org/software-spectrum.php, accessed deaths in mothers, newborn babies, and stillbirths, 27 February 2019). and at what cost? Lancet. 2014;384(9940):347-70. 7. UNAIDS. Reference group on estimates, modelling 2. Boschi-Pinto C, Black RE. Development and use and projections wesbite (http://www.epidem.org/, of the lives saved tool: a model to estimate the accessed 27 February 2019). impact of scaling up proven interventions on mater- 8. UNICEF, WHO. Every Newborn: an action plan to nal, neonatal and child mortality. Int J Epidemiol. end preventable deaths. Geneva: World Health 2011;40(2):520–1. Organization; 2014. 3. WHO, UNICEF, UNFPA, World Bank, UNFPA. Trends 9. Food Fortification Initiative. Global progress of in maternal mortality: 1990 to 2015. Geneva: World industrially milled cereal grains web page (http:// Health Organization; 2015. www.ffinetwork.org/global_progress/, accessed 4. UN IGME. Estimate of neonatal deaths in 2016. 27 February 2019). From levels & trends in child mortality. Report 2017. 10. Blencowe H, Kancherla V, Moorthie S, Darlison MW, Estimates developed by the UN inter-agency group Modell B. Estimates of global and regional preva- for child mortality estimation. New York: United lence of neural tube defects for 2015: a systematic Nations Children’s Fund; 2017. analysis. Ann N Y Acad Sci. 2018;1414(1):31–46. 5. Blencowe H, Cousens S, Jassir FB, Say L, Chou D, 11. Healthy Newborn Network. Global chlorhexidine Mathers C, et al. National, regional, and worldwide scale-up tracker: engagement web page (https:// estimates of stillbirth rates in 2015, with trends from www.healthynewbornnetwork.org/chlorhexi- 2000: a systematic analysis. Lancet Glob Health. dine-dashboard/, accessed 27 February 2019). 2016;4(2):e98–e108.

137 138 SURVIVE AND THRIVE: Transforming care for every small and sick newborn

© Carlota Guerrero / Save the Children programmes emerginginsub-Saharan Africa relatedto disorders isalsoincreasinginLMICs(10) , withstrong screeningforandbiochemicaltory-based metabolic to reducekernicterus (3). The useofbroaderlabora- rhesus diseasehave beenhighlightedasimportant Appropriate screeningandmanagementofG6PD (8,9). clinical judgementarealsonecessary during phototherapy. Therefore, evaluation or laboratory these devices isthatthey cannotbeutilized accurately rubinemia early(5–7).However, of asignificantlimitation arebeingevaluated tobetternometry identifyhyperbili- growing numberofdevices forbilirubi transcutaneous - inLMICs(2–4).A andmorbidity with significantmortality grammes holdgreatpromise.Kernicterus isassociated Both bilirubin andgeneralnewborn screeningpro- Screening innewborns with pretermnewborns canberecommended(1). assessment, moreevidence isneededbefore routineuse comes. While several toolsexist for behavioural neonatal tions andidentificationofpotentialriskstopositive out- newborns inLMICsprimarilyreliesonclinicalexamina- Beyond theacutecarephase,evaluation ofsmallandsick Screening andmonitoring ANNEX 2: differences relatedtoexperience andlanguagecan remarkably consistentacrosscultures andsettings, While earlychildhood development milestonesare Infancy andbeyond (14), andoutcomes(17). Recent efforts documentitsaffordability andaccuracy increasingly available andreliableinLMICs(14–17). in thoseborntoosoonoratriskduetoasphyxia isalso ultrasound toscreenfor intraventricular haemorrhage on such (13) programmeswillalsobeimportant . Cranial lower-resourced, higher-risk settings. Additional research turity screeningguidelinesfromHICsbeadaptedfor impairments. Itissuggestedthatretinopathy ofprema- tial duetotheelevated risksofoxygen-related vision provider trainingisalsoexpanding inLICs. This isessen- of prematurity screeningismorecommoninMICs,and dardize thesepracticesinLMICsaswell. Retinopathy charge inHICs;current efforts isstandard - aretostan Screening newborns for visionandhearingpriortodis- ventions available (10–12). noteworthy given therearefeasible andbeneficialinter hypothyroidismcongenital andsickle celldisease. This is and surveillance methodsmustbe availableand surveillance childhood development milestones, monitoring Culturally appropriate educationonearly withsmallandsickcontact newborns. providers atalllevels willhave themost In LMICs,caregivers andcommunity-based of thechild anditsparentscaregivers. communicate findingsandaddresstheneeds providers shouldbesensitive tohow they able orscreeningisnew (18, 19). Therefore, arenotreadilyavailin areaswhereservices - their families, may bestigmatized, particularly that children identified and throughscreening, parisons. Inaddition,providers mustbeaware matters whenconductingcross-group com- of screeningormonitoringtools. This also andvalidation translation,adaptation ity providers stepstoassurehigh-qual- musttake are attained (18). Given such differences, influence the exact ageatwhich milestones - ANNEXES

locally. It may be included as part of early stimulation and Early screening and monitoring would include specific supportive caregiving programmes. evaluation for possible motor disability or cerebral palsy, particularly for small and sick newborns. A recent system- Formal monitoring, screening and assessment tools are atic review found two behavioural tools for infants less also increasingly available to evaluate former small and than 5 months of age that had strong predictive validity sick newborns. Some were developed in LMICs, others for later diagnosis of cerebral palsy: the Prechtl Qualitative were adapted for these settings. Each tool differs some- Assessment of General Movements (GMA; sensitiv- what in its approach (e.g. caregiver interview versus ity 98%) and the Hammersmith Infant Neurological direct assessment) and user requirements (e.g. commu- Examination (HINE; sensitivity 90%) (28). For children nity health-care provider versus physician/psychologist). older than 5 months, the HINE maintained 90% sensitivity. Both tools require training and experience to administer, with the GMA having a more expensive mandatory Caregiver report tools training and evaluation component for use.

Two caregiver report tools developed in LMICs include Some examples of screening tools developed in HICs the Developmental Milestone Checklist and the that have been translated or adapted and validated for International Guide for Monitoring Child Development. use in LMICs include the Ages & Stages Questionnaire, The Developmental Milestones Checklist (20) is a 66-item, 3rd edition (ASQ-3), for children aged 4 to 60 months (29); interview-based, caregiver report tool developed in Kenya the Parents’ Evaluation of Developmental Status (PEDS) to assess the motor, language and personal-social domains for birth to 8 years (30); and the Denver Developmental of development from early infancy through 2 years of age. Screening Test (Denver-II) for birth to 6 years (31). It has been expanded and validated in Burkina Faso as part Since July 2015, the Denver-II has no longer been sold of a nutrition intervention project (21). The International or updated. As screening tools, these cover multiple Guide For Monitoring Child Development (22) takes a domains but are not fully comprehensive diagnostic tests. monitoring, rather than a screening, approach (19) and While they do not require a high degree of education or includes open-ended questions in the domains of lan- training to administer, all require appropriate translation, guage, motor, socioemotional (e.g. interpersonal relating adaption and validation (18). Both the ASQ-3 and PEDS and play) and self-help skills. It is designed for use by have initial purchase costs. The PEDS has additional trained health-care providers and includes components to per-use charges. The PEDS tool uses caregiver-report only, support child development and follow-up plans (22). whereas the ASQ-3 can include direct assessment.

Direct assessment tools Approaches for programme evaluation

Three additional tools developed in LMICs involve direct When selecting a tool for programme evaluation, the assessment with the child. The Kilifi Developmental following should be considered: project purpose; pop- Inventory evaluates hand-eye coordination and locomo- ulation under study; available staff skills and education; tor skills in children aged 6 to 35 months (23). The Rapid and the tool’s psychometric properties (18, 32). Any Neurodevelopment Assessment (RNDA) (24) was devel- of the above-mentioned tools could be appropriate for oped in Bangladesh to assess children from birth to 2 programme evaluation, particularly those involving direct years of age, with expanded validation for older children assessment of the child’s general or motor development. (25). It is intended for use by trained health professionals Additional tools, developed and validated primarily in HICs, and assesses primitive reflexes, motor, cognitive, lan- have been adapted and used extensively for research in guage and behavioural domains of development, vision, LMICs. All have educational and training requirements. hearing and seizure. In a validation study in Guatemala, the RNDA was successfully administered by communi- The Bayley Scales of Infant and Toddler Development ty-health workers (26). Finally, the Malawi Developmental (BSID) evaluates fine and gross motor, cognitive and Assessment Tool (MDAT) (27) evaluates gross and fine language domains of development in children aged 1 to motor, language and social domains in children from birth 42 months (33). The BSID has been extensively used to 6 years of age, with cognitive items distributed in the in LMICs. The BSID 3rd edition (BSID-III) was released language and social sectors. The MDAT is designed to be in 2005; changes in scoring warrant close attention readily adaptable to the local setting (27). to longitudinal projects or cross-study comparison.

139 140 SURVIVE AND THRIVE: Transforming care for every small and sick newborn and sick newborns (38). that canimprove globalmonitoringof outcomesfor small sound, cross-culturally relevant, andfreelyavailable tool hold promisefor thedevelopment ofapsychometrically been initiated(39–41).Ongoingcollaborative efforts ments for infants andchildren under3years ofagehave More recently, population-level developmental assess- focus onschool readinessassessment(18). are currently available for preschool-age children, witha (38). Population-level toolsthataremorecomprehensive analysis multicountry cluster surveyenabledpreliminary hood development index intheUNICEFmultipleindicator education and preparedtoenterinto,benefit from,pre-primary monitor whetherchildren aredevelopmentally ontrack SDG 4.2in2015, to ithasbecomeincreasinglyimportant community, regionorcountry. theintroductionof With studied toevaluate earlychildhood development ina Population-level assessmentshave beencreatedand Approaches atthepopulation level inthisagegroup(36). the fullrangeofability correctly, raisingconcernsthatitmay notrepresent some olderchildren whoanswer allavailable items may underestimatethedevelopmental status of and iscurrently usedinmultipleLMICs. The Mullen development for children aged0to68months(35) ates cognitive, language,motorandvisual-spatial Mullen ScalesofEarlyLearning (Mullen)evalu- Griffiths IIIcourse,priortopurchasing thistool. The need toberegisteredusers,having completeda sonal-social-emotional. Cliniciansandresearchers coordination (finemotor);grossmotor;andper foundations oflearning;language;eye andhand months. Developmental areasassessedinclude and covers anexpanded agerangefrom1to72 Edition (Griffiths III)(34)was releasedinJuly 2016 The Griffiths ScalesofChildDevelopment, 3rd (37). The inclusionofthe10-item earlychild- -

from caregivers providers andcommunity (42). withvaluable planning, input building andsustainability oped andsupported. This willrequirelocalcapacity programmesmustbedevel earlyintervention - quality opment progressaccuratelyandaffordably inLMICs, growsAs theability toassessearlychildhood devel- without charge. turally relevant toolsandmake themreadilyavailable would betodevelop psychometrically sound,cross-cul- advance administrationandtraining. An important tation, level, arecostlytopurchase andrequirecomplex adap- Many individual-level tools,andmostatprogramme ofusefulinformation. toincludethistype will beimportant supportive caregivingprogrammesexpand inLMICs,it health anddevelopmental issues. As early stimulationand support parentsinappropriatemonitoringfor common and transitionhome,thereislittle formal guidanceto As greaternumbersofsmallandsick newborns survive Gaps inscreeningandmonitoring

REFERENCES

1. Craciunoiu O, Holsti L. A systematic review of the 13. Visser KE, Freeman N, Cook C, Myer L. Retinopathy predictive validity of neurobehavioral assessments of prematurity screening criteria and workload impli- during the preterm period. Phys Occup Ther Pediatr. cations at Tygerberg Children’s Hospital, South Africa: 2017;37(3):292-307. a cross-sectional study. S Afr Med J. 2016;106(6). 2. Olusanya BO, Ogunlesi TA, Slusher TM. Why is ker- 14. Clay DE, Linke AC, Cameron DJ, Stojanoski B, Rulisa nicterus still a major cause of death and disability in S, Wasunna A, et al. Evaluating affordable cranial low-income and middle-income countries? Arch Dis ultrasonography in East African neonatal intensive Child. 2014;99(12):1117–21. care units. Ultrasound Med Biol. 2017;43(1):119–28. 3. Slusher TM, Zipursky A, Bhutani VK. A global need 15. Ghoor A, Scher G, Ballot DE. Prevalence of and for affordable neonatal jaundice technologies. Semin risk factors for cranial ultrasound abnormalities in Perinatol. 2011;35(3):185–91. very-low-birth-weight infants at Charlotte Maxeke 4. Slusher TM, Day LT, Ogundele T, Woolfield N, Owa Johannesburg Academic Hospital. SAJCH. JA. Filtered sunlight, solar powered phototherapy and 2017;11(2):66–70. other strategies for managing neonatal jaundice in 16. Mulindwa MJ, Sinyangwe S, Chomba E. The preva- low-resource settings. Early Hum Dev. 2017;114:11–15. lence of intraventricular haemorrhage and associated 5. Chimhini GLT, Chimhuya S, Chikwasha V. Evaluation risk factors in preterm neonates in the neonatal inten- of transcutaneous bilirubinometer (DRAEGER JM sive care unit at the University Teaching Hospital, 103) use in Zimbabwean newborn babies. Matern Lusaka, Zambia. Med J Zambia. 2012;39(1):16–21. Health Neonatol Perinatol. 2018;4:1. 17. Tann CJ, Nakakeeto M, Hagmann C, Webb EL, 6. Olusanya BO, Mabogunje CA, Imosemi DO, Nyombi N, Namiiro F, et al. Early cranial ultrasound Emokpae AA. Transcutaneous bilirubin nomograms findings among infants with neonatal encephalopa- in African neonates. PLoS One. 2017;12(2):e0172058. thy in Uganda: an observational study. Pediatr Res. 7. Yu Z-B, Han S-P, Chen C. Bilirubin nomograms for 2016;80(2):190–6. identification of neonatal hyperbilirubinemia in healthy 18. Fernald LCH, Prado E, Kariger P, Raikes A. A toolkit term and late-preterm infants: a systematic review for measuring early childhood development in low- and meta-analysis. World J Pediatr. 2014;10(3):211–18. and middle-income countries. Washington DC: 8. Murli L, Thukral A, Sankar MJ, Vishnubhatla S, World Bank; 2017. Deorari AK, Paul VK, et al. Reliability of transcutane- 19. Ertem IO. The international guide to monitoring child ous bilirubinometry from shielded skin in neonates development: enabling individualized interventions. receiving phototherapy: a prospective cohort study. J Early Childhood Matters. 2017:83–87. Perinatol. 2017;37(2):182–7. 20. Abubakar A, Holding P, Van de Vijver F, Bomu G, 9. Nagar G, Vandermeer B, Campbell S, Kumar M. Van Baar A. Developmental monitoring using Effect of phototherapy on the reliability of transcuta- caregiver reports in a resource-limited setting: neous bilirubin devices in term and near-term infants: the case of Kilifi, Kenya. Acta Paediatrica. a systematic review and meta-analysis. Neonatology. 2010;99(2):291–7. 2016;109(3):203–12. 21. Prado EL, Abubakar AA, Abbeddou S, Jimenez EY, 10. Terrell BL, Padilla CD, Loeber JG, Kneisser I, Somé JW, Ouédraogo JB. Extending the develop- Saadallah A, Borrajo GJ, et al. Current status mental milestones checklist for use in a different of newborn screening worldwide: 2015. Semin context in sub-Saharan Africa. Acta Paediatrica. Perinatol. 2015(39):171–87. 2014;103(4):447–54. 11. Adeniran KA, Limbe M. Review article on congenital 22. Ertem IO, Dogan DG, Gok CG, Kizilates SU, Caliskan hypothyroidism and newborn screening program in A, Atay G, et al. A guide for monitoring child devel- Africa; the present situation and the way forward. opment in low- and middle-income countries. Thyroid Disorders & Therapy. 2012;1(1):1–4. Pediatrics. 2008;121(3):e589. 12. Kuznik A, Habib AG, Munube D, Lamorde M. 23. Abubakar A, Holding P, van Baar A, Newton CRJC, Newborn screening and prophylactic interventions van de Vijver FJR. Monitoring psychomotor develop- for sickle cell disease in 47 countries in sub-Saharan ment in a resource-limited setting: an evaluation of Africa: a cost-effectiveness analysis. BMC health the Kilifi developmental inventory. Ann Trop Paediatr. Serv Res. 2016;16(1):304. 2008;28(3):217–226.

141 142 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 32. 31. 30. 29. 28. 27. 26. 25. 24.

Neuropsychol. 2017;23(7):761–802. children inlow- andmiddle-incomecountries.Child sures for theneurodevelopmental assessment of Shapiro EG,Bangirana P, John CC.Selectingmea- Semrud-Clikeman M,Romero RAA,Prado EL, screening test.Pediatrics. 1992;89(1):91. oftheDenverrestandardization developmental Bresnick B. The Denver II:amajorrevision and Frankenburg WK, DoddsJ, Archer P, ShapiroH, 2nd Edition.Nolensville:PEDSTest.com; 2013. and addressdevelopmental andbehavioral problems. evaluation ofdevelopmental status (PEDS)todetect Glascoe FP. Collaboratingwithparents:usingparents’ Publishing Co.;2009. monitoring system. Baltimore: Paul H.Brookes 3rd edition(ASQ-3). A parent-completedchild Squires J, Bricker D. Ages questionnaire, &stages 2017;171(9):897–907. advances indiagnosisandtreatment.JAMA Pediatr. incerebralpalsy: diagnosis andearlyintervention RN, Brunstrom-Hernandez J, etal.Early, accurate Novak I,MorganC, Adde L,Blackman J, Boyd Medicine. 2010;7(5):e1000273. child development inrural African settings. PLoS ation, validation,ofatooltoassess andreliability developmental assessmenttool(MDAT): the cre- M, Kayira E,van denBroekNR,etal. The Malawi Gladstone M,LancasterGA, UmarE,Nyirenda Health Dev. 2015;41(6):1131–1139. ment instrument for infants inGuatemala.ChildCare ofrapidneurodevelopmentaland adaptation assess- R, Valencia-Moscoso G,MuslimaH,etal. Validation Thompson L,Peñaloza RA,Stormfields K, Kooistra Bangladesh. Pediatrics. 2013;131(2):e494. assessment formental 2-to5-year-old children in M, Akter N,etal. Validation ofrapidneurodevelop- Khan NZ,MuslimaH,Shilpi AB, Begum D, Parveen children inBangladesh. Pediatrics. 2010;125(4):e762. assessment instrumenttal for under-two-year-old Bilkis K,etal. Validation ofrapidneurodevelopmen- Khan NZ,MuslimaH,Begum D, Shilpi AB, Akhter S,

42. 41. 40. 39. 38. 37. 36. 35. 34. 33. come countries. Arch DisChild.2014;99(9):840–8. children withdisabilitiesinlow-income andmiddle-in- prevalence studies: for screeningandinterventions Yousafzai AK, Lynch P, GladstoneM.Moving beyond 2014;23(4):346–68. MethodsinMedicalResearch.ment. Statistical Van BuurenS. Growth charts ofhumandevelop- Population HealthMetrics.2017;15(1):3. development scalefor useinlow-resourced settings. Development andvalidation ofanearlychildhood McCoy DC,Sudfeld CR,Bellinger DC,etal. Pediatrics Association Congress.2017. dle-income countries.InternationalDevelopmental opment (IYCD) for children 0-3inlow- andmid- providing indicatorsofinfant andyoung child devel- Gladstone M,Janus M,KarigerP, etal. A toolfor dictive PLoS modeling. Med.2016;13(6):e1002034. regional, andglobalprevalence estimatesusingpre- status inlow- andmiddle-incomecountries:national, Sudfeld CR,etal.Earlychildhood developmental McCoy DC,Peet ED, EzzatiM,DanaeiG,Black MM, tion/, accessed27February 2019). - itoring-progress-on-primary-and-secondary-educa com/2016/10/26/target-4-1-what-is-at-stake-for-mon- October 2016 (https://gemreportunesco.wordpress. ress onearlychildhood education?Published 26 Target 4.2–whatisatstakefor monitoringprog- Global EducationMonitoringReport wesbite (blog). 2016;13(1):138–51. among preschool children. EurJDev Psychol. The Mullenscalesofearlylearning:ceilingeffects Yitzhak N,Harel A, Yaari M,Friedlander E, Yirmiya N. Inc.;1995.Pines: American GuidanceService Circle Mullen EM.scalesofearlylearning. metric properties.Oxford: Hogrefe Ltd;2016. manual. Part I:overview, development andpsycho- Green E,StroudL,Bloomfield S, etal.Griffiths III Corporation; 2006. opment: 3rdedition.San Antonio: The Psychological Bayley N.Bayley scalesofinfant andtoddlerdevel- ANNEXES

ANNEX 3: List of interventions

INTERVENTION KEY COMPONENTS EXAMPLE GUIDELINES

Thermal care, • Newborns, especially preterm and LBW, need help to maintain their normal WHO early essential including KMC body temperature. Preventing hypothermia and its complications starts newborn care: clinical immediately after birth. practice pocket guide • Skin-to-skin contact is the ideal care for small, stable newborns (a hat is essential to prevent large amounts of heat loss from the head) (1). WHO. Kangaroo mother care: a practical guide • In many settings, prolonged and continuous or intermittent skin-to-skin contact for LBW newborns is referred to as KMC (Box 3.1). American Academy of • For very small and sick newborns, incubators and/or infant radiant warmers Pediatrics: essential care with dry, clean linens may be needed, but skin-to-skin contact should still be for small babies supported and encouraged whenever appropriate and accepted.

Infection prevention • Small and sick newborns are at heightened risk of infection, including UNICEF. Infection and control hospital-acquired infections, and susceptible to antimicrobial resistance. prevention and control at • As important interventions in preventing infection, WHO and UNICEF strongly neonatal intensive care promote handwashing before and after touching a newborn; early and units (slide deck) exclusive breastfeeding or breastmilk feeding; and skin-to-skin contact (2). • Care should be provided in a clean environment with strict protocols for cleaning equipment and surfaces. Adequate space is needed to minimize crowding, with only one newborn per cot or incubator when the newborn is not in KMC or with the mother (3).

Treatment of • Infections in the neonatal period can rapidly evolve into sepsis and require WHO recommendations neonatal infection early, accurate detection and judicious treatment with antibiotics by skilled on newborn health: and use of providers in facilities. guidelines approved antibiotics • Narrow-spectrum antibiotics should be promoted and prescribed over by the WHO guidelines broad-spectrum options to limit antibiotic resistance and unnecessary costs, review committee while maintaining high-quality care (see Chapter 2). It is equally important to avoid the overuse or misuse of antibiotics, such as prophylactic use when inappropriate. • The prescription of drugs and fluids in neonates requires accurate measurements, such as the newborn’s weight, and age calculations to select the correct type and dosing.

Nutrition and • Breastmilk is the biological norm and the best nutrition for all newborns, WHO. Protecting, assisted feeding and is the first nutritional choice for inpatient care. Breastmilk helps to promoting and supporting boost immunity, promote weight gain, prevent low blood sugar and breastfeeding in facilities support brain development. providing maternity and • Mothers of small and sick newborns need special support to initiate and newborn services maintain lactation when the newborn is not able to feed at the breast (4). In circumstances where mothers are not (yet) able to express breastmilk WHO guidelines on for the newborn, donated breastmilk is the preferred, likely temporary, optimal feeding of low- alternative (4, 5). birth-weight infants in • Many preterm newborns have delayed or impaired sucking and swallowing low- and middle-income ability and require special help. This can include expressing breastmilk, cup countries or nasogastric tube feeding, and sometimes intravenous fluids. If expressed breastmilk or other feeds are medically indicated for preterm infants, feeding methods such as cups or spoons are preferable to feeding bottles and teats (5). For preterm infants who are unable to breastfeed directly, non- nutritive sucking and oral stimulation may be beneficial until breastfeeding is established (5). • Newborns with severe illness may need intravenous fluids to complement nasogastric tube feeding. In certain situations, those who are unable to feed by mouth or tube may require special nutritional formula intravenously, referred to as total parenteral nutrition. • Parents can be taught feeding techniques and cue-based feeding. Support that continues after discharge should include regular growth monitoring to determine nutrition status and adequate weight gain (6–9).

143 144 SURVIVE AND THRIVE: Transforming care for every small and sick newborn ANNEX 3: ListofInterventions breathing support Oxygen useand INTERVENTION encephalopathy for neonatal Supportive care neonatal jaundice Management of KEY COMPONENTS • • • • • • • • • • • • • • • discharge 2and4)(17, (seeChapters 18). ensure thatfollow-up careisincludedininpatientservicesandafter (usually ophthalmologists)canvisitinpatientcarewards andclinicsto topreventlong-termvisionproblemsinchildren.delivery Trained providers prematurity andreferral fortreatment,asneeded,shouldbepart ofservice Where oxygen isused,timelyscreeningatonemonthforretinopathy of the newborn. threatened pretermlabourcanreducetheseverityofrespiratorydistressin Where feasibleandappropriate,antenatalcorticosteroids forthemotherin monitored todetecttheclinicalsignsofneonatalencephalopathy. Any newborninpoorcondition orrequiringresuscitationatbirth shouldbe anticonvulsant therapy(e.g.phenobarbital). and hypoglycaemia (fluidsandfeeding)seizuremanagementwith Inpatient careforthoseaffected includespreventionofdehydration clinical seizuresthatcanprogresstolack ofconsciousnessandapnoea. or absentsucking andabnormalmovements. The moreseverecasesinclude affected newbornspresentwithlethargy, reducedlevelofconsciousness,poor as hyperalert orirritable with poorsucking andfeeding.Moderateseverely can beclassifiedasmild,moderateorsevere.Mildlyaffected newbornspresent Signs andsymptomsofneonatalencephalopathy tendtoevolve over timeand effective neonatalresuscitation. Preventing neonatalencephalopathy requiresqualityobstetriccareand with aprevalence >5%(20). current recommendation isforroutineG6PDscreening incountries for G6PD,bothofwhich areimportant causesofseverejaundice. The Strategies shouldalsobeinplace topreventrhesusdiseaseandscreen (22). management byhealth-careproviders need fortransfusioncanbereduced throughimproved preventionand Severe neonataljaundicemayrequireexchange transfusions (21),butthe the bilirubinlevelsareveryhigh. phototherapy.when receiving Occasionally, intravenousfluidscanhelpif It isimportant thatanewborncontinuestofeed,preferablywithbreastmilk, cleanwithworkinglamps. kept (20). For effective phototherapy, devicesmustbeproperlymaintainedand phototherapy tooptimize theamountoflightreaching theirbodysurface Newborns needtobecorrectly positionedonwhitesheetsduring bilirubin levels. preferably LEDphototherapy(19), andregularmonitoringofblood Most casesofjaundicecanbetreatedwitheffective andsafephototherapy, In somecases,mechanical ventilation(withintubation)mayberequired. resource settings usinglow-cost technology (knownasbubbleCPAP) (15, 16). very effective forsmallandsick safelyinlow- newbornsandcanbedelivered breathing support airway mayberequired.Continuouspositive pressureis For thosebornextremelypreterm orwithseriousillness,moreadvanced and carefulmonitoringresuscitationasneeded(14). Apnoeic episodescanalsobepreventedwithmedicines(such ascaffeine) breathing stops)andhelpsregulateforat-riskpretermnewborns. Skin-to-skin contactreducesthefrequencyofapnoeicepisodes(when (12,its functionandproperdelivery 13). oftrainedstaff and supplysystemsadequatenumbers whounderstand Oxygenalsorequiressafestorage oxygen concentration,andhumidifiers. oxygen levelsintheblood(pulseoximetry), toadjust oxygen-air blenders in newbornsrequiresnon-invasivesystemsformonitoringsafethresholdof to anewborn’s lungsandleadtobronchopulmonary dysplasia.Oxygenuse childhood blindness(11) canalsocausedamage . Modesofoxygen delivery complications, includingretinopathy ofprematurity, aleadingcauseof sick newborns.Unregulateduseofoxygen, however, canleadtolong-term Oxygen isalifesavingessentialmedicineforinpatientcareofsmalland ofoxygen, blendedwithair,safe delivery usuallythroughanasalcannula. newborns withimmaturelungfunction(10). Respiratory support involves Many smallandsick newbornsrequirebreathingsupport, especiallypreterm (continued) EXAMPLE GUIDELINES neonatal care guidelines Médecins sansFrontières hospital care for children WHO pocket bookof children oxygen therapy for WHO guidelineson midwives doctors, nursesand problems: aguidefor managing newborn WHO guidelineson breathe resources Pediatrics helpingbabies Americanof Academy newborn resuscitation WHO guidelinesonbasic and midwives for doctors, nurses problems: aguide managing newborn WHO guidelineson ANNEXES

INTERVENTION KEY COMPONENTS EXAMPLE GUIDELINES

Developmentally • Caregivers should pay close attention to developmentally supportive care Médecins sans Frontières: supportive care and for small and sick newborns. Health-care providers should minimize handling neonatal care guidelines neuroprotection and group interventions when possible (clustering care), as tolerated by the infant, to maximize uninterrupted time for sleep and growth. • Maximizing contact with parents, especially mothers, encourages bonding and supports lactation and feeding with breastmilk (23). • Correct positioning of the newborn protects skin, safeguards sleep and minimizes stress and pain (see Chapter 4 for more details on developmentally supportive care for children) (24–27). • Health-care providers need to be able to recognize pain cues, particularly in small newborns, and know how to prevent and minimize pain (28). Pain can affect brain development, with potential long-term effects. • Evidence supports improved comfort management when newborns are breastfed or placed skin-to-skin with mother or another family member during painful procedures (27, 29). For sicker newborns, analgesics may be necessary, although only with full risk awareness and proper monitoring in place throughout treatment (30). • Appropriate tools are recommended to assess pain and make decisions on pain and comfort management (30).

145 146 SURVIVE AND THRIVE: Transforming care for every small and sick newborn 13. 12. 11. 10. 9. 8. 7. 6. 5. 4. 3. 2. 1. REFERENCES

States States Agency for International Development; 2017. inpatient care of newborns. Washington DC:United Preemie.Every Safe andeffective oxygen usefor Lung Dis.2010;14(11):1362–8. medicine: acallfor international action.IntJ Tuberc English M,Howie S, etal.Oxygen isanessential Duke T, GrahamSM,CherianMN,Ginsburg AS, levels for 2010. Pediatr Res. 2013;74 (Suppl1):17–34. impairmentestimates atregionalandglobal opmental R, ZhongN,etal.Preterm birth-associatedneurodevel - Blencowe H,Lee AC, CousensS, Bahalim A, Narwal accessed 7March 2019). org/wp-content/uploads/2017/07/Oxygen_7.6.17.pdf, technical brief. 2017 (https://www.everypreemie. use for inpatientcareofnewborns –donoharm PreemieEvery –SCALE.Safe andeffective oxygen 1):S24–28. psychosocial support.JPerinatol. 2015;35 (Suppl planning andbeyond: recommendationsfor parent Purdy IB, CraigJW, ZeanahP. NICUdischarge BMJ Open.2011;1(1):e000023. providing information toparentsofpreterminfants. ventions for communicatingwith,supportingand L. A systematic mappingreview ofeffective inter Brett J, Staniszewska S, Newburn M,Jones N, Taylor 2008;84(3):201–9. children: outcomeat2years. EarlyHumDev. programinlow birthweightof anearlyintervention Ulvund SE,DahlLB. A randomized controlledtrial Kaaresen PI,Ronning JA, Tunby J, Nordhov SM, mothersmilkclub.com/, accessed27February 2019). Rush Mothers’ MilkClubwebsite (http://www.rush- Organization; 2018. guidelines.Geneva:implementation World Health therevised baby-friendlyservices; initiative: hospital feeding infacilities providingandnewborn maternity WHO. Protecting,promotingandsupportingbreast- Geneva:services. World HealthOrganization;2017. feeding infacilities providingandnewborn maternity WHO. Protecting,promotingandsupportingbreast- States Agency for InternationalDevelopment; 2017. for inpatientcareofnewborns. Washington DC:United Preemie.Every Safe andeffective infection prevention mittee. Geneva: World HealthOrganization;2017. lines approved by the WHO guidelinesreview com- WHO. Recommendations on newborn health:guide- States Agency for InternationalDevelopment; 2017. for inpatientcareofnewborns. Washington DC:United Preemie.Every Safe andeffective thermalprotection - 25. 24. 23. 22. 21. 20. 19. 18. 17. 16. 15. 14. Infant NursRev. 2008;8(4):173–9. brain development: asystematic review. Newborn the criticalroleofsleepinfetal andearlyneonatal Graven S, Browne J. Sleep andbraindevelopment: Rev. 2009;7(7):224–59. ical development: asystematic review. JBILibrSyst Positioning ofpreterminfants for optimal physiolog- Picheansathian W, Woragidpoonpol P, Baosoung C. 2016;177:133–9.e131. born atlessthan30weeks’ JPediatr. gestation. outcomes: a7-year longitudinal study ininfants feeding, braindevelopment, and neurocognitive Molesworth C, Thompson DK,etal.Breastmilk Belfort MB, Anderson PJ, Nowak VA, Lee KJ, J Pediatr (RioJ).2007;83(4):313–22. jaundiceintermandlateprematurenatal newborns. Filho F, Aranha-Netto A, MarbaST. Follow-up ofneo- Facchini FP, MezzacappaMA,Rosa IR,Mezzacappa Organization; 2013. common childhood illnesses.Geneva: World Health 2nd edition.Guidelinesfor themanagementof WHO. Pocket carefor bookofhospital children: 2017;114:11–15. jaundice inlow-resource settings. EarlyHumDev. apy andotherstrategiesfor managingneonatal JA. Filteredsunlight,solarpowered photother Slusher TM, Day LT, Ogundele T, Woolfield N, Owa 2011(12):Cd007969. mia inneonates.Cochrane Syst Database Rev. phototherapy for unconjugatedhyperbilirubinae- Kumar P, Chawla D, Deorari A. Light-emitting diode Agency for InternationalDevelopment; 2018. athy ofprematurity. Washington DC:UnitedStates Preemie.Every Prevention andscreeningofretinop- (Suppl 2):S93–s99. team.IndianPediatr.role oftheneonatal 2016;53 for detectingandtreatingretinopathy ofprematurity: Grover S, Katoch D, DograMR,Kumar P. Programs wardnatal inMalawi. PLoS One.2014;9(1):e86327. distressinaneo- system intreatmentofrespiratory S, Gest A, etal.Efficacy ofalow-cost bubbleCPAP Kawaza K,Machen HE,Brown J, Mwanza Z,Iniguez case reports.PLoS One.2013;8(1):e53622. source settings: technical assessmentandinitial tinuous positive pressuresystem airway for low-re- S, LangH,etal. A high-value, low-cost bubblecon- Brown J, Machen H,Kawaza K,Mwanza Z,Iniguez Health Organization;2016. WHO. Oxygen therapy for children. Geneva: World - ANNEXES

26. Shah PS, Herbozo C, Aliwalas LL, Shah VS. 29. Pillai Riddell RR, Racine NM, Gennis HG, Breastfeeding or breast milk for procedural Turcotte K, Uman LS, Horton RE, et al. Non- pain in neonates. Cochrane Database Syst Rev. pharmacological management of infant and young 2012(12):CD004950. child procedural pain. Cochrane Database Syst Rev. 27. Johnston C, Campbell-Yeo M, Disher T, Benoit B, 2015(12):CD006275. Fernandes A, Streiner D, et al. Skin-to-skin care for 30. American Academy of Pediatrics (committee on procedural pain in neonates. Cochrane Database fetus and newborn and section on anesthesiology Syst Rev. 2017;2:cd008435. and pain medicine). Prevention and management of 28. Carter BS, Brunkhorst J. Neonatal pain manage- procedural pain in the neonate: an update. Pediatrics. ment. Semin Perinatol. 2017;41(2):111–16. 2016;137(2):e20154271.

147 148 SURVIVE AND THRIVE: Transforming care for every small and sick newborn included inthisanalysis List ofCountdownto2030countries ANNEX 4: NUMBER 20 21 26 25 24 23 22 27 28 18 17 16 15 13 12 14 10 19 11 2 1 5 4 3 8 7 6 9 Algeria Afghanistan COUNTRY Bangladesh Azerbaijan Angola Bolivia Bhutan Benin Democratic People’s Republic ofKorea Côte d'Ivoire Congo Comoros Chad Cameroon Cambodia Central African Republic Central African Burundi Burkina Faso Botswana Democratic Republic oftheCongo Djibouti Gabon Ethiopia Eritrea Equatorial Guinea Dominican Republic Gambia Ghana ISO 3166-1 ALPHA-3 ISO COUNTRY CODE DOM COM GMB BWA KHM GNQ CMR AGO COG GHA BGD COD GAB AFG DZA BTN BEN BOL TCD AZE PRK CAF ETH BFA BDI CIV ERI DJI ANNEXES

ISO 3166-1 ALPHA-3 NUMBER COUNTRY COUNTRY CODE

29 Guatemala GTM

30 Guinea GIN

31 Guinea-Bissau GNB

32 Guyana GUY

33 Haiti HTI

34 Honduras HND

35 India IND

36 Indonesia IDN

37 Iraq IRQ

38 Jamaica JAM

39 Kenya KEN

40 Kyrgyzstan KGZ

41 Lao People’s Democratic Republic LAO

42 Lesotho LSO

43 Liberia LBR

44 Madagascar MDG

45 Malawi MWI

46 Mali MLI

47 Mauritania MRT

48 Morocco MAR

49 Mozambique MOZ

50 Myanmar MMR

51 Namibia NAM

52 Nepal NPL

53 Nicaragua NIC

54 Niger NER

55 Nigeria NGA

56 Pakistan PAK

149 150 SURVIVE AND THRIVE: Transforming care for every small and sick newborn countries includedinthisanalysis ANNEX 4: ListofCountdownto2030 NUMBER 58 57 59 60 61 65 64 63 62 66 68 67 71 70 69 81 80 79 78 77 75 73 72 76 74 Papua NewGuinea Panama COUNTRY Paraguay Philippines Rwanda Somalia Solomon Islands Sierra Leone Senegal South Africa Sudan South Sudan Tajikistan of Eswatini in2018) Swaziland (renamedtheKingdom Suriname Zimbabwe Zambia Yemen Venezuela Republic (Bolivarian of) Uzbekistan United Republic of Tanzania Uganda Turkmenistan Togo Timor-Leste ISO 3166-1 ALPHA-3 ISO COUNTRY CODE SOM RWA SWZ UGA ZWE ZMB YEM TKM PNG SDN TGO SUR SEN SSD VEN UZB PAN TZA PRY PHL SLB ZAF SLE TLS TJK (continued) european foundation for the care of newborn infants

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