Bliss Community Health Professionals’ Information Guide

Supporting families of premature and sick babies following discharge from hospital. www.bliss.org.uk Bliss Community Health Professionals’ Information Guide Second edition, Bliss 2011 © Bliss 2011 No part of this booklet may be reproduced in any form or by any electronic or mechanical means without prior permission from Bliss.

Whilst every care is taken providing information, please note that it is of a general nature. Bliss does not accept any liability, including liability for any error or omission.

Bliss, the special care baby charity This publication has been endorsed by Unite/Community Practitioners’ and Health Visitors’ Association (CPHVA).

This publication has been made possible with financial support from Abbott.

We are grateful to Sands, the stillbirth and neonatal death charity, for permission to use and adapt some material from their parent support leafletSaying goodbye to your baby.

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Acknowledgements

Written by Layla Brokenbrow, edited by Mark Gorman, designed by Jess Milton.

A special thank you to the reviewing panel; it would not have been possible to produce this guide without their valuable support. Annie Aloysius, Speech and Language Therapist, Imperial College Healthcare NHS Trust; Marie Flaherty, ANNP, Jessop Wing, Sheffield Teaching Hospitals; Cheryl France, Parent; Alan Gibson, Consultant Neonatologist, Jessop Wing, Sheffield Teaching Hospital; Alix Henley, Improving Bereavement Care Team, Sands – the stillbirth and neonatal death charity; Chrissie Israel, Developmental Care Lead, Southmead Hospital, Bristol; Caroline King, Paediatric Dietitian (Neonatal Specialist) Department Nutrition & Dietetics, Hammersmith Hospital; Judi Linney MBE, President, Twins & Multiple Births Assoc; Jacqui Morgan, Neonatal Unit Manager, Wirral University Hospital NHS Foundation; Dave Munday, Professional Officer, Community Practitioners’ and Health Visitors’ Association (CPHVA ); Caitlin Reid, Family Support & Education Manager, TinyLife; Sandie Skinner, Consultant Neonatal Nurse, Royal Hampshire Hospital, Winchester, Lead Nurse South Central Network; Julie Walsh, Neonatal Community Midwife, Wirral University Hospital NHS Foundation; Alison Wright and the Scottish Neonatal Nurses' Group Executive members. We would also like to say thank you to the parents who provided feedback or contributed to this booklet. Acknowledgement also to June Thompson, previous author.

About Abbott Abbott is a global, broad-based health care company devoted to the discovery, development, manufacture and marketing of pharmaceuticals and medical products, including nutritionals, devices and diagnostics. At Abbott, we deliver medicines you can count on to provide innovative patient care – across the spectrum of health. Discovering new and better ways to manage health has driven our work for more than a century to address the important health needs from infancy to old age. Visit www.abbott.co.uk for more information.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 3

Foreword The care of preterm and sick newborn babies has developed dramatically over the last two decades. Improved technology and advances in medical and nursing care means that we can now look after babies born very early in pregnancy and babies who are sick at birth. Parents and other family members who have had a baby or babies in a neonatal unit may have experienced an enormous rollercoaster of emotions and lived through one of the most traumatic periods of their lives. As hospitals seek to discharge babies into the care of their parents earlier, the Working in partnership Working role of community health professionals becomes ever more important, as does the increasingly specialist knowledge needed to support these babies and their families at home. This guide explores both the medical and emotional stages that preterm and sick babies and their families experience. It also provides background information on a wide range of medical conditions, developmental issues and parents’ concerns that you may encounter. There are signposts to further reading and other sources of information aimed at strengthening the support available for families in the community. To prepare this guide, Bliss has worked with the Community Practitioners’ and Health Visitors’ Association.

Andy Cole Chief Executive

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 5 Contents Chapter 1 Overview of preterm and sick newborn babies...... 11

Contents Risk factors for preterm labour...... 11 Classification of preterm and low birthweight babies...... 12 Impact on parents...... 13 Health outcomes...... 13 Chapter 2 Understanding the parents’ perspective...... 19 What their baby may look like...... 19 Encouraging the parents’ relationship with their baby...... 20 Coming to terms with the birth...... 22 The relationship between parents, unit staff and you...... 23 Chapter 3 The neonatal unit...... 29 Neonatal networks and units in the UK...... 29 Supporting the parenting role...... 33 Equipment and procedures on the neonatal unit...... 34 Chapter 4 Nutrition and feeding issues in the early weeks.....41 Modes of feeding...... 42 Types of feeds...... 43 Encouraging the expression of breast milk...... 46 The baby’s growth...... 47 Chapter 5 Multiple births...... 51 Feeding...... 51 Help and support...... 52 Health and development...... 53 Chapter 6 Bereavement...... 57 Understanding grief...... 57 Palliative care and end of life care...... 59 Making memories...... 59 Health concerns...... 60 Practical information...... 60 Follow-up support...... 62 Other family members ...... 63 Anniversaries...... 64

6 Bliss 2011 – Bliss Community Health Professionals’ Information Guide Bliss resources . About Bliss. . Glossary Chapter 11Glossaryand Bliss resources. Weaning. Behavioural andcognitive problems. Developmental milestones. Weight gainandgrowth. Chapter 10Thepretermchild’s healthanddevelopment. Postnatal depression. The nextpregnancy Siblings. The father’s roleinthefamily. The parents’relationship. Chapter 9Encouraginghealthyfamilyrelationships. Growth issues. SyncytialVirus(RSV). Respiratory Management ofGOR. Gastrostomy andstoma. Using oxygenathome. Bathing. Touch andmassage. Common feedingproblems. Feeding andfeedingissues. Sleep. Going outandabout. Medication. Adjusting tolifeinthenewhomeenvironment. Chapter 8Helpingthefamilyathome. Checklist beforedischarge. Identification ofvulnerablebabiesandfamilies. Support athome. Continuing medicalneeds. Discharge planning. Areas ofconcernforparents. Chapter 7Goinghome...... 123 129 123 103 102 100 99 131 116 115 101 101 79 67 111 117 82 80 94 92 90 88 86 82 80 111 87 87 79 74 72 72 70 67 91 71

Overview of preterm and sick babiesContents Introduction

This guide has been written specifically for health visitors and other community- based health professionals. It gives you up-to-date evidence-based information about the post discharge care needed by babies who have been born preterm or

Introduction Introduction sick. Just as importantly, it highlights the support that you can give to their parents as they prepare for and adjust to family life after hospital. It will also help you develop a greater understanding of neonatal care and the short and long term issues that affect babies and their families. The guide is designed to complement your own practice and to ensure that community health professionals feel confident and able to give consistent and appropriate advice to parents as part of a co-ordinated healthcare team. Families whose babies are, or have been, cared for in a neonatal unit can have particular requirements in terms of information and advice. Health visitors are well- placed to provide this and families will value the support you can give them. Babies’ and parents’ needs are diverse and vary according to circumstances and the stage they have reached, around the time of birth, while in the neonatal unit, after discharge home, during the first year and subsequently. By focusing on many different aspects of care (clinical, practical and psychosocial) the guide can help you individualise the care you provide, while at the same time contributing to parents’ confidence in their own knowledge and skills. For more information on Bliss resources and services for families and health professionals visit www.bliss.org.uk

8 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 1 1 Overview of preterm and sick newborn babies Overview of preterm and sick babies

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1. Overview of preterm and sick newborn babies 1

• It is common for parents of preterm babies to experience feelings of grief, loss, fear and guilt for some time after their baby has been discharged from hospital. • By building a strong supportive relationship with parents, you can significantly alleviate their distress and anxiety and make a valuable contribution to improving the outcomes for their preterm baby. • It is important to ensure that their baby’s developmental progress is closely monitored, while avoiding assumptions regarding the types of problems he or she might experience. Survival rates of preterm babies (especially those born before 28 weeks gestation) have improved significantly over the last 30 years. This is due to technological advances in medicine, such as the widespread use of surfactant therapy for respiratory distress syndrome, together with antenatal glucosteroids and new ventilation techniques.

Assumptions should never be made about preterm babies and any problems Overview of preterm and sick babies that they may experience: each baby must be carefully assessed according to their individual health, development and needs. The baby’s developmental progress should be closely monitored. The origin of developmental difficulties has been attributed to a delay in neurologic maturation, early cerebral injury, social factors, or reduced early growth1. Risk factors for preterm labour A range of factors can contribute to the risk of preterm birth and/or low birthweight. These include both medical and social factors, many of which are interrelated and beyond the control of mothers and their families. Medical factors If a pregnant woman experiences any of the following, she may be at a higher risk of preterm birth and/or having a baby with a low birthweight: • Anxiety and stress • Cervical incompetence/short cervical length • Infections • Low consumption of fish during early pregnancy • Multiple pregnancy • Older mothers • Preterm rupture of the membranes • Pre-eclampsia/hypertension • Previous spontaneous preterm delivery • Sexually transmitted diseases (including bacterial vaginosis and chlamydia)

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 11 1 • Systemic lupus erythematosus (SLE) • Type 1 diabetes during pregnancy • Uncontrolled asthma • Being underweight • Eating disorders • Being younger than 15 years old Social factors If a pregnant woman experiences any of the following, she may be at a higher risk of preterm birth and/or having a baby with a low birthweight: • Alcohol misuse • Cigarette smoking • Intimate partner abuse • Being a member of a high-risk ethnic group • Being from a low socioeconomic class • Substance misuse • Unmarried or unsupported Overview of preterm and sick babies

Classification of preterm and low birthweight babies

By gestation Preterm baby: born before 37 weeks Moderately preterm baby: born between 35 and 37 weeks Very preterm baby: born between 29 and 34 weeks Extremely preterm baby: born between 24 and 28 weeks

By weight at birth Low birthweight baby: weighs less than 2,500g (5.5lbs) Very low birthweight baby: weighs less than 1,500g (3.0lbs) Extremely low birthweight baby: weighs less than 1,000g (2.0lbs)

12 Bliss 2011 – Bliss Community Health Professionals’ Information Guide Impact on the parents 1 During pregnancy most parents imagine an ideal labour and birth, resulting in a perfect, healthy baby whom they can take home shortly after delivery. However it is common for parents of a baby admitted to a neonatal unit to have experienced a complicated pregnancy, labour and/or birth. The healthy baby they imagined is, in many cases, not the baby they see in the cot or incubator. Feelings of parental grief, loss, fear and guilt are common, as well as anxiety about their baby’s survival and long term future. Parents can feel helpless, confused and frightened and it is not surprising that research has shown that mothers of preterm babies experience more severe levels of psychological distress in the neonatal period than mothers of term babies2. For couples who have undergone several courses of fertility treatment before becoming pregnant (which can be a stressful and distressing experience in itself), the impact of then having a preterm birth may be particularly devastating. These cumulative difficulties can affect some parents, resulting in increased anxiety

about the survival and well-being of their baby or babies. Overview of preterm and sick babies Health outcomes Technological advances mean that the prognosis of very small preterm babies has improved significantly in recent years, and babies born from 29 weeks gestation onwards usually have a high survival rate and develop normally. However, extremely preterm babies born before 28 weeks gestation, or with a very low birthweight (less than 1,500g), may face an increased number of health or developmental challenges. Short to medium term outcomes Apart from short term complications that may occur following birth, studies have shown that very low birthweight or extremely preterm infants can be at risk of: • Poor health • Slower growth • Developmental disabilities • Increased likelihood of cerebral palsy • Visual problems • Hearing problems • Motor delay and poor motor skills • Specific difficulties in areas of learning and academic achievement • Difficulties with visuomotor integration • Poor language skills

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 13 1 Long term outcomes for extremely preterm babies

EPICure 1 The first EPICure study started in 1995 to follow the survival, long term development and health status of a cohort of babies born before 25 weeks gestation. Results have since been published with regards to their outcomes at six and ten years of age. At six years of age the data revealed that 22 per cent had severe disabilities, 24 per cent had moderate disabilities, 32 per cent had mild disabilities, 41 per cent had some cognitive impairment and 22 per cent had no problems. Physical disabilities include mild to severe forms of cerebral palsy, blindness and deafness. Twenty per cent of babies that survived have some form of cerebral palsy, although only half of these have a severe or moderate form. The study also showed that the most common medical problems were related to respiratory disease.

EPICure 2 The way doctors and nurses look after preterm babies has changed considerably Overview of preterm and sick babies since the original EPICure study began in 1995, and more babies seem to be surviving now compared to then. A second study was undertaken during 2006 – collecting information on all babies born in England between the gestational ages of 22 weeks and 26 weeks and six days. A small section of the cord attached to the placenta was also looked at under a microscope to check for evidence of infection or inflammation occurring in the womb before the baby was born. Using survival information from the 2006 study and outcome data from the 1995 study, the chances of survival without serious disabilities in England today have been roughly estimated as3: • 23 weeks - 11 per cent • 24 weeks - 24 per cent • 25 weeks - 40 per cent

14 Bliss 2011 – Bliss Community Health Professionals’ Information Guide Chris and Nicola’s story 1 Chris and Nicola Robson from Lockerbie were terrified when their baby, Millie, was born at 24 weeks in 2005, weighing just 750g. Millie was whisked away to intensive care where she stayed for eight weeks. During this time she suffered three cerebral haemorrhages, had a total of eight blood transfusions and was suspected to have an infection in her intestine. Nicola and Chris found it difficult to cope, not knowing what each day would bring. Nicola couldn’t stay on the unit at the hospital where Millie was transferred to and found it practically and emotionally stressful having to travel so far every day to visit her.

”The whole experience was exhausting. At the time I just focussed on my little girl getting well and I was thankful we were in a great hospital Overview of preterm and sick babies with amazing staff. I asked questions when I had them and they were always answered, which helped me through each day,” says Nicola.

“Looking back I wonder how we got through but it has made us stronger. The hardest part at times was when I had to go back to work and could not be with my wife and daughter. We came through some really dark days to have a brilliant little girl now,” says Chris.

Millie is now five years old and a very happy, healthy little girl with no side effects from her prematurity. She is full of life and is a fantastic daughter and big sister. Chris and Nicola feel very fortunate that their life has turned out this way.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 15 1 References 1. Abernethy L J, Cooke R W I, Foulder-Hughes L, Caudate and hippocampal volumes, intelligence, and motor impairment in 7-year-old children who were born preterm. Pediatric research 2004; 55(5) 884-893

2. Hummel P, Parenting the High-Risk Infant, NBIN 2003, 3(3), 88-92

3. Moore T, Johnson S, Hennessy E, Chisholm P, Haider S, Marlow N, The EPICure-2 Study: have neurodevelopmental outcomes improved after extremely preterm birth in England? A comparison of birth cohorts from 1995 and 2006. [ PAS Annual Meeting Denver April-May 2011]

Useful information www.epicure.ac.uk Overview of preterm and sick babies

16 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 2 Understanding the parents’ perspective

2. Understanding the parents’ perspective 2

• Meeting parents before their baby goes home from the unit is crucial in helping to build their trust and confidence in you. • You can also play an important role in encouraging parents to be actively involved in their baby’s care as soon their baby is stable enough. • Acknowledging that this is an emotional and difficult time for parents, listening to what they have to say and encouraging them to express their feelings will help them come to terms with what has happened to their baby.

The birth of a preterm or sick baby can affect parents in different ways depending on the circumstances of the birth and the family situation. Over the last decade, the different pressures experienced by parents whose baby is admitted onto a neonatal unit have been widely documented. The birth of an extremely preterm or extremely low birthweight baby is now recognised to be a particularly stressful event for parents and other members of the family. While the majority of babies require only special care, any form of neonatal care is likely to appear frightening to parents. Grief, anxiety, guilt, feelings of failure and

helplessness can impinge on the early parent-child relationship and may have perspective Understanding the parents’ long-lasting effects on the parents’ perceptions of their child’s health, many of whom worry about their baby’s survival and the possibility of their child having a long term disability.1, 2 What their baby may look like If the baby was born very preterm, parents are likely to be shocked by their tiny size and appearance. It is also likely that they will see various tubes and equipment attached to their little bodies. The earlier a baby is born, the less mature their lungs will be, so very preterm babies may be dependent on a ventilator to help with their breathing. The different types of equipment will seem alarming to parents until they become more familiar with what it is for and how it works.

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Understanding the parents’ perspective 2

Bliss 2011 found toincreasetheincidenceanddurationoflactationin themother. smells. Practicalandemotionalinvolvementinthebaby’s careshasalsobeen the babybyallowinghim/hertogetknowtheirparents’ voices, touchand These activitiesimprovetheparent’s abilitytobondwiththeirbaby, andbenefit holding, cuddling,feeding,bathingandnappychanging. the earliestpossibleinvolvementintheirpracticalandemotional cares,suchas to encourageregularandfrequentvisitstheirbabyontheneonatalunit The bestwaytoimproveaparent’s self-esteemandcare-givingcompetenceis comforting touchand/orkeentospendtimewiththeirbabyundisturbed. this isagoodopportunitytosupportnewparentswhoareunsureaboutusing to aminimum.Althoughcoversmaybeplacedoverthecotsorincubators, the babiesbymedicalstaffisactivelydiscouragedandlightnoisekept Many unitshavealsointroducedadaily‘quiettime’duringwhichhandlingof 24-hour opendoorpolicyforparentsandsiblings. them andtouchinghimorherwheneverpossible,withmostunitsprovidinga Parents shouldalwaysbeencouragedtospendtimewiththeirbaby, talkingto Encouraging theparents’ relationship withtheirbaby support group. available ontheunit:aparent supportgroup,acounsellor, ora Bliss may findithelpfultoseeksupport throughwhicheverofthefollowingmightbe and alwaysaddressingbothparents whentalkingabouttheirbaby. Parents providing relevantstressmanagementtechniquesforboth mothersandfathers, these challengesbyencouragingfatherstoexpresshowthey arefeeling, as wellbeingsupportiveoftheirpartner. Itisimportantthatyouacknowledge Fathers inparticularmayhavetolookafterotherfamilymembers andgotowork It isalsoimportanttoconsiderthedifferentpressureseach parent maybeunder. • • • • • • • Common characteristicsofpretermbabiesmayinclude: In females,thelabiamajoradonotyetcoverminora. be undescended. In males,thescrotummayhavefewrugae,andtestes Reduction inspontaneousactivityandtone. Jaundice. Very littlesubcutaneousfat,hairorexternalearcartilage. weeks gestation. A coveringoffinebodyhair(lanugo),whichnormallydisappearsafter38 underlying veinsiseasilyseen. Very thin,transparent,waxyskinthroughwhichthefinenetworkof – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 3

2 Liz and Anthony’s story Doctors told Liz, from South London, that Henry (born at 24 weeks) might not make it. Henry suffered a traumatic birth and was bruised and swollen from his head to shoulders. He suffered from cerebral bleeds and it was feared he might have been severely brain damaged. He was monitored in an intensive care unit for eight weeks and then spent a further four weeks in SCBU.

“It was hard being scared to touch him. I didn’t really feel like his mother as all the nurses and doctors were doing a better job caring for him than I could. The only

thing I clung to was that I perspective Understanding the parents’ could give him my milk. At first I thought I wouldn’t be able to cuddle him but skin-to-skin care helped a lot. As I became more capable at giving Henry his medications it got easier, and he felt more like my son,” says Liz. Anthony had a different experience to Liz. After the first week he had to get on with normal life and go back to work while Liz was at the hospital all day, every day. However, he still managed to go to the hospital every evening after work and at the weekends too. He would change Henry’s nappy and gave him skin- to-skin care whenever he could. This really helped him bond with his son.

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Understanding the parents’ perspective 2

Bliss 2011 deal with. who haveababyontheneonatalunit,andthiscanbedifficultforparentsto other peopleinstead.Familyandfriendsmightnotknowwhattosay feel thatthisistheirbabybecauseheorshenotathomeandinthecareof Parents mayneedhelptoacceptatiny, sickbabyastheirown.Theymaynot withthebirth Coming toterms ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ happened totheirbaby: There aremanywaysyoucanhelpparentscometotermswithwhathas Practical tips ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ baby isstableenough. Encouraging themtobeactivelyinvolvedintheirbaby’s careassoontheir the barriersofequipmentsuchasincubator. Encouraging bothparentstotouch,strokeandcuddletheirbabydespite Encouraging themothertoexpressherbreastmilk. new memberofthefamily. Congratulating themandexplainingthatitisstillallrighttocelebratethis birth toababy. Reminding themthatinthemiddleofallstresstheyhavestillgiven rest ofthefamily, particularlythoseofanyotherchildren. Assuring themitisoktopayattentiontheirownneedsandthoseofthe Encouraging themtoexpresstheirfeelings. Listening towhattheyhavesay. Acknowledging thatthisisanemotionalanddifficulttimeforthem. – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – The relationship between parents, unit staff and you 2 It is important to meet parents and begin a relationship with them before the baby goes home. This builds the parents’ trust and confidence that support will be available to them at home, once their baby is discharged. It is also vital to establish early, sensitive and consistent communication with hospital staff, particularly as staff on a neonatal unit are often extremely busy and may not be able to spend as much time talking to parents as they, or the parents, would wish. Parents often find that the stress they are under makes it difficult to retain all the information given to them. Repeating this information to them at a later time, in simple, non-technical language, can help them to understand what is happening to their baby and may help encourage them to ask more questions. Parents have also said it can be helpful to talk to another health professional, who is not part of the unit, but is knowledgeable about the medical procedures the baby will be receiving and can explain why certain types of equipment are used.

Practical tips Meeting parents prior to discharge and establishing good channels of

communication with unit staff will help you to: perspective Understanding the parents’ ✔✔ reduce maternal distress ✔✔ provide a feeling of ‘normality’ which parents may have felt lacking following their baby’s preterm birth ✔✔ assist parents in coping with the emotional highs and lows that accompany their baby’s treatment and stay on the unit ✔✔ promote babies’ health and development ✔✔ help parents who are facing the prospect of an adverse outcome, such as the death of their baby.4

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Understanding the parents’ perspective 2

Bliss 2011 should washtheirhandsthoroughly beforeenteringandonleavingtheunit. if theyhaveaninfectiousillness suchaschickenpoxoraheavycold,andthey siblings toandfromschool.Children shouldnotbetakentotheneonatalunit underestimated, andsingleparents especiallymayneedhelpwithgettingolder The effortandlogisticsinvolved inparentsvisitingbabieshospitalcannotbe the baby’s incubator. visits andencouragingthemtomakecardspaintingsthat canbehungnear the individualfamily, butoptionsincludetakingsiblingstothehospitalon some in thecareofnewbaby. muchon Howtheychosetodothiswilldependvery It isalsogoodfortheparentstoinvolvetheirotherchildren as muchpossible important asever. they arebusylookingafterthenewbabystilllovethem andtheyareas what ishappening.Theyshouldgivethemreassurancethat eventhough It isimportanttoadviseparentstakethetimeexplain to theirotherchildren through thistimeofstress. responsibility forlookingafterthem,buttheseroutinescanhelpthefamilyget children maybeupsetthatadifferentmemberofthefamilyhastakenover shouldbecontinued.The If possible,normalroutinessuchasgoingtonursery in theformoftantrums,aggressionorclingingbehaviour. is athomeorinhospital.Oftenthismaybetakenoutontheparentsthemselves, and thearrivalofanewbrotherorsistercantriggerjealousy, whetherthebaby anything helpful.Longmaternalabsenceswillalsobedifficultforyoungchildren, problems butmaynotbeoldenoughtounderstandwhatisgoingon,ordo baby’s siblings.Thechildrenprobably knowthattheirparentsareexperiencing hardtimeforthe Having abrotherorsisteronneonatalunitcanbevery Siblings

– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Diversity issues 2 In a technologically complex and highly intense arena such as the neonatal unit, cultural consideration in provision of care may be overlooked.5 However, studies have consistently shown that certain ethnicities and races are determinants of low birthweight, preterm delivery and neonatal death.6 The different practices which shape the way parents from other cultures care for their children may also influence their health beliefs and behaviours; it is important that such differences be sensitively addressed and openly discussed. Understanding the parents’ perspective Understanding the parents’

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Understanding the parents’ perspective 2

Bliss 2011 5. MoghtaderR, 4. Cuttini, extremely low birthweight infants. Archives of Disease in Childhood Fetal and and Fetal Childhood in Disease of Archives infants. birthweight low extremely Neonatal Edition Neonatal 6. Moghtader, (Blissstudyday, Chertsey, 16April2004) [email protected] 2. Tommiska V, ÖstbergM,EllmanV, 3. Cuttini, 1. CuttiniMetal, References decisions: a comparison of neonatal unit policies in Europe. Archives of Disease Disease of Archives Europe. in policies unit neonatal of comparison a decisions: and their preterm infants in the NICU. NICU. the in infants preterm their and in Childhood Fetal and Neonatal Edition Neonatal and Fetal Childhood in – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – (Archives of Disease in Childhood Fetal and Neonatal Edition, Edition, Neonatal and Fetal Edition Childhood in Neonatal Disease and of Fetal (Archives Childhood in Disease of (Archives 2002;86(3)F161-F164 Appropriate care and support of ethnic minority mothers mothers minority ethnic of support and care Appropriate Parental visiting, communication, and participation in ethical ethical in participation and communication, visiting, Parental Parental stress in families of 2-year old old 2-year of families in stress Parental Bliss studyday, Chertsey, 16April2004 1999;81:F84-FF91 , 1999) 1999) 3 The neonatal unit

Hospitals Providing Neonatal Care Care Neonatal Providing Hospitals transfer babiesthatrequirecomplex orlongtermintensivecare. Local neonatalunitsprovidealllevelsofcarefortheir localpopulation,butthey that requiremorehighdependency orintensivecarebeforetransfer. population. Theymainlydeliverlevelonecare,butwillalso stabiliseanybabies Special care babyunits(SCBU) providespecialcarefortheirownlocal types ofneonatalunits: Standardshasdefinedthethreedifferent centre.TheBAPMService the tertiary of care.Allnetworkshaveatleastonelevelthreeorintensive careunitwhichis is madeupofanumberdifferenttypesunit,capable deliveringarange unit appropriatetotheirneeds,asnearhomepossible. Eachnetwork aimistoensurethatmothersandbabiesarecaredforinalevelof Their primary throughout theUKaredividedintoregionalclinicalnetworks. To ofcareforbothmothersandbabies,neonatal units improvethedelivery of neonatalcarebasedonnetworks,whichitbelievesisvalidacrosstheUK. 3. Theneonatalunit The BritishAssociationofPerinatalMedicine(BAPM) Neonatal networksandunitsintheUK from daystoweeksormonths,dependingonhisherneeds. stressful events.Thelengthofapretermbaby’s stayintheneonatalunitwillvary infection, pretermruptureofmembranes,reducedintrauterinegrowthor different reasons,includingamultiplepregnancy, pre-eclampsia,anintrauterine preterm babieswillneedneonatalcare.Pretermbirthcanhappenformany jaundice ortheymaybesufferingfromothermedicalcomplications.Most extra breathingsupportormonitoring,somemayneedtreatmentfor babies mayhaveaninfectionandneedintravenousantibiotics,others unit whichspecialisesinlookingafterpreterm,smallandsickbabies.Some One inninebabiesborntheUKwillspendatleastafewdaysneonatal • • engage withandtouchtheirbaby. encouraging themtouse‘positivetouch’asawayofsupportingparents with theirsonordaughter. We recommendspendingtimewithparentsand out invasiveprocedureswhichpreventtheparentsfromhavingcontact baby inaneonatalunit,particularlyifthedoctorsornurseshavetocarry It canbedifficultforparentstodevelopaclosephysicalattachmenttheir baby, hisorher parents,anddiscusstheinfant’s progresswiththestaff. Health visitorsarealwayswelcometovisittheunitsoyoucanmeet

Bliss 2011– (2010) Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 1 sets out the principles for the delivery setsouttheprinciplesfordelivery Service Standards for for Standards Service

29 The neonatal unit 3 30 3 The neonatal unit

Bliss 2011 Services that thebabyandfamilyremainasfocusalongwholepathwayofcare. Standards for Neonatal Care Neonatal for Standards • • • • Level 2.Highdependencycare –forbabies: • • • • • Level 1.Specialcare –forbabieswhoneed: level, transitionalcare. In additiontothethreekeylevelsofcarewithinneonatalunits,thereisafourth • • • The DH Different levelsofcare boundaries. Clinical NetworksforScotland,structuredinlinewiththeexistingregionalplanning Action Group.ThisgrouphasoverseentheestablishmentofthreeManaged forward therecommendationsofneonatalsubgroupMaternityServices GroupwassetupinScotlandtotake Scotland In2010,aNeonatalExpertAdvisory Thetaskforceproduceda of neonatalservices. agree asetofmeasureswhichwouldmakesignificantdifferencetothequality England In2008,theDepartmentofHealth(DH)setupaNeonatalTaskforce to from theneonatalnetwork. local populationalongwithadditionalcareforbabiesandtheirfamiliesreferred Neonatal intensivecare units(NICU)providethewholerangeofcarefortheir needing shorttermintensivecare. with apnoeicattackswhorequire stimulation receiving parenteralnutrition weigh below1,000ganddonotfulfilanyofthecategories for intensivecare who arereceivingnasalcontinuouspositiveairwaypressure (CPAP) butwho andconvalescencefromspecialistcare. recovery phototherapy tube feeding additional oxygen continuous monitoringoftheirbreathingorheartrate Level 3(intensivecare) Level 2(highdependency) Level 1(specialcare,theleastintensivecare) – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Toolkit for High Quality Neonatal Services Neonatal Quality High for Toolkit , designed to stimulate the action needed to improve services andensure , designedtostimulatetheactionneededimproveservices definethreelevelsofneonatalcare: Toolkit for High Quality Neonatal Neonatal Quality High for Toolkit andthedraft Scottish Service Service Scottish 1 • • • • Level 3.Neonatalintensivecare –forbabies: establishing arelationshipwiththem. about thefamilymaybebeneficial,ascanmeetingparents ontheunitand Establishing arelationshipwiththeneonatalstaffandsharing anyconcerns unit (includingparticipationinwardrounds)canbearranged overthephone. and todiscussthechild’s progresswiththestaff.Inmostcases,avisitto You arealwayswelcometovisittheunitseebaby, meettheparents, about tobedischarged. inform thechild’s healthvisitorabouttheadmission,andalsobeforebabyis Following theadmittanceofanewbornbabytoneonatal unitstaffmay Communication withtheneonatalunitstaffand parents antibiotics. of caremayinvolvelighttherapyforjaundice,tubefeedingandintravenous preparation forgoinghome.Motherandbabysharearoomthistype This isspecialcareforbabieswhoarebeingcaredbytheirmothersin Transitional care following staffinglevelsforneonatalcare The DH Recommended nursingratios: • • • who requiresurgery. disease with severerespiratory gestation andneednasalcontinuouspositiveairwaypressure weighing lessthan1,000gand/orwhowerebornat28weeks support(ventilation) needing respiratory Special care:minimumof1:4stafftobabyratio High dependency:minimumof1:2stafftobabyratio Intensive care:minimumof1:1stafftobabyratio Toolkit for High Quality Neonatal Services Neonatal Quality High for Toolkit

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 2 : , andBAPMrecommendthe

31 The neonatal unit 3 32 3 The neonatal unit

Bliss 2011 return home. the precursortoawelcome sufficiently improvingandisoften because thebaby’s conditionis of careorunitwillonlytakeplace each baby. Transfer toalowerlevel fact thattherearefewerstafffor the differenceinregimeand due tolessintensivelevelsofcare, highlevelsofstress brings very local specialcareunitinparticular intensive careunitbacktotheir time forparents.Transfer froman transfer, anxious itisalwaysavery Whatever thereasonsfor separated. presenting fewerrisksandcausinglessstressbecausemotherbabyarenot are usedtotransferthebabysafely. Transfers in-uteroaregenerallyrecognisedas stressful forthefamiliesinvolvedandinfant.Specialiststaffequipment Transferring pretermorsicknewbornbabiesoverevenshortdistancescanbevery network withthemostappropriatelevelofspecialistobstetricandneonatalcare. risk ofgivingbirthtoasickbaby, theymaybetransferredtothehospitalwithin for morespecialistcare.Wheremothershavebeenidentifiedaspresentingahigh be transferredtoeitherthelocalneonatalorintensivecareunitwithinnetwork neonatal intensivecareisborninahospitalwithspecialunit,heorshewill care isavailableasneartohomepossible.If,forexample,ababyneeding The mainpurposeoftheManagedClinicalNetworksistoensurethatappropriate Transfer betweenhospitalunits need tobeinformedofthebaby’s conditionandprogress. continue tobeinvolvedinthebaby’s careafterthebabyleavesunitand/or and physiotherapist.You shouldalsoestablishwhichhealthprofessionalsmay involved inthecareofbabyincluding,forexample,paediatrician,dietitian It isimportantthatyouareawareofallthehealthprofessionalshavebeen communication Interdisciplinary – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – experiences. with theirbabyaswellcounteractingsomeofthediscomfort parent-baby attachment.Thishasthedualbenefitofhelpingparentstobond provide comfortandreassurancetothebaby, aswellgreatlyenhancing Positive touchcanbeusedinnumerousways,allofwhich contact willdependonthebaby’s conditionatthetime. support theirbabyandthechoiceofmostappropriatelevelorkind their baby. The neonatalstaffwillshowparentsthewaysinwhichtheycan touch’ isatechniquewhichcanencourageparentstoengagewith,andtouch procedures whichpreventthemfromhavingcontactwiththeirbaby. ‘Positive outmanyinvasive difficult forparents,particularlywhenthestaffarecarrying Developing aclosephysicalattachmenttobabyinneonatalunitcanbe Supporting theparenting role

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss different developmentalstages. at and howitisadministeredwillvary qualified babymassageinstructor benefits. Itisaskillbesttaughtby a varietyofhealthandemotional introduced. Babymassagehas stronger, massagecanbe Massage Asthebabygrows response. introduced dependingonthebaby’s babies. Movementcanbegradually fragile stroking canproduceinvery avoids theoverstimulationwhich babies learntotrustcontactand Still touchcanhelp baby feelsecure,relaxedandloved. This ‘containmentholding’helpsthe baby’s head,andoneonthemiddle. baby byplacingonehandonthe parents lettheirhandstouch incubator, staffmaysuggestthat be morecomfortableleftlyinginthe Containment holdingIfababywill

33 The neonatal unit 3 34 3 The neonatal unit

Bliss 2011 often containedinasinglevital signsmonitor. newborn babies.Thesearesome oftheroutineparameters,manywhichare Monitoring Manyclinicalsignsmaybemonitored incriticallyillandconvalescing unit include: The equipmentandproceduresusedtotreatcomplications ontheneonatal helpful. explanations andreassurancethatyoucanprovidewilltherefore beextremely the neonatalunitlongafterbabyhasreturnedhomewith them.Anyfurther Parents mayvoicetheneedforfurtherexplanationsabout what hashappenedin comforted, and/orgivenpainreliefifnecessary. when theirbabyisonventilation.Theyrequirereassurance thattheirbabywillbe their babymaysufferpainordiscomfortwhentubesareinserted or, forexample, of alarmsgoingoffparticularlydistressing.Parentsarefrequently concernedthat is oftenoverwhelming,andintheearlydaysparentsmayfind theconstantsound unit environment–withitshightechmachines,‘alien’proceduresandbusystaff Although neonatalunitstaffusuallyexplaintheuseofspecialisedequipment, the extensiveuseofspecialisedequipment. reasons, includingavarietyofshorttermproblemsorcomplicationsthatrequire of thesebabieswillneedtobeadmittedtheneonatalunitforanumber immediately afterbirthforresuscitationorstabilisationofthebaby. Nearlyall suite inthedelivery A numberofinvasivetechniquesmaybenecessary Equipment andprocedures intheneonatalunit – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – establishing sleepingpatterns. may alsohelpwithweightgainandin they arecalmer. Inthelongerterm it rate andincreasedoxygenlevelsas skin carehaveamoreregularheart that babieswhoexperienceskin-to- the babyisready. Researchsuggests with establishingbreastfeedingwhen help withbreastmilkproductionand with theirbaby. Skin-to-skincarecan feel thattheyarehavinglovingcontact pouch. Thisisoftenthefirsttimeparents like ayoungkangarooinitsmother’s placed incontactwithaparent’s chest, the termusedtodescribeababybeing Skin-to-skin care Skin-to-skincareis 3,4,5 be arrangedfollowingacranialultrasoundaccordingtothe findings. of prematuritythebabyandmedicaljudgement.ACTand/or MRIscanmay A seriesofcranialultrasoundsmaybeperformedaccording tothefindings,level orhydrocephalus. (following previoushypoxicbraininjury) may showstructuralabnormalities,haemorrhages,periventricular leucomalacia invasive viaajelly-coveredprobeplacedovertheanteriorfontanelle. Results abnormalities thatmayinfluencemanagementandcare. The scanningisnon- asphyxia. Theaimofthecranialultrasoundscanistoidentify anymajor orthosewhosufferedbirth neurological signsfollowingatraumaticdelivery majority ofpretermbabies,acutelyillnewbornsdisplayingabnormal Cranial ultrasoundsThesearestandardinvestigationsperformedonthe an artery. oxygen andcarbondioxide,isperformedbytakingabloodgassamplefrom be detected.Thedefinitivemeasurementofallbloodgasparameters,suchas which measurebloodoxygenlevelsdifferentlysothatexcessmayalso such astranscutaneousoxygenandcarbondioxideprobesorarterialcatheters, being given.Forthisreasonmanybabiesarealsomonitoredwithotherdevices, baby movesandtheyarerelativelypooratshowingwhentoomuchoxygenis pronetofalsealarmswhenthe more orlessoxygen.Thesemonitorsarevery foot orhand,whichusesalightsensortohelpdeterminewhetherbabyneeds iscommonlyused.Asmallprobewrappedaroundababy’spulse oximetry) Oxygen andotherbloodgaslevelssaturationmonitoring(alsocalled at regulartimesanddisplaythisonascreen. the baby’s armorleg.Thecuffwill automaticallytakethebaby’s bloodpressure Alternatively bloodpressuremaybemeasuredbyasmallcuffwrappedaround of bloodpressureandwillsoundanalarmifitbecomestoohighorlow. continuously viaacatheterinsertedintoanartery. Thisgivesaconstantdisplay Blood pressure Sickbabiesmayhavetheirbloodpressuremeasured between breaths. breathing movementsandistriggeredifthebabypausesfortoolong babies areoftenmonitoredusingasimpleapnoeaalarmwhichdetects the heartorbreathingratebecomestoofastslow. Duringconvalescence, usually measuredfromelectrodesonthebaby’s chest.Analarmistriggeredif Heart rateandrespiratory rateThebaby’s ratesare heartandrespiratory bronchopulmonary dysplasia,seethe bronchopulmonary cannulae orafacemask.Babies withChronicLungDisease(sometimescalled support, orbynasal who needadditionaloxygenbut donotrequireventilatory (see nextpage).Itcanalsobe administereddirectlyintotheincubatorforbabies blood sampling.Oxygencan be usedwhilethebabyisventilatedoronCPAP unit. Thebaby’s and/or oxygenrequirementsaremonitoredbypulseoximetry Oxygen iscommonlyusedinthetreatmentofbabieson neonatal support Respiratory

Bliss 2011– Glossary Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss formoreinformation)may

35 The neonatal unit 3 36 3 The neonatal unit

Bliss 2011 particularly suitableforbabies withseriousbreathingproblems. ventilation maybe 400 to900breathsperminute. Highfrequencyoscillatory andflow-interrupterventilatorsthatcanprovide ventilators includejet,oscillatory breathing rate(normallybetween60and80breathsperminute). Othertypesof which thishappenscanbevaried.Itadjustedtomatch thebaby’s own lungs, andthenallowstimefortheaircarbondioxide to exit.Thespeedat in use.Themostcommontypegentlypushestheair/oxygen mixintothe the breathingfunctioncompletely. Thereareseveraldifferenttypesofventilation lungs. Itcanhelpthebaby’s owneffortstobreatheor, ifnecessary, takeover cases, amechanicalventilatordeliversmixtureofairand oxygentothebaby’s Insuch supportintheneonatalperiodisessentialfortheirsurvival. respiratory gestation, thebrain’s centrehasnothadtimetomatureand respiratory Ventilation Insomepretermbabies,especiallythosebornbefore28weeks is usuallyonlyavailableatspecialisedneonatalcentres. ofthegasrequiresspecialisedequipmentandexpertisewhich dioxide. Delivery flow ofbloodpastthelungsandhencebetterexchangeoxygencarbon bloodvesselstodilate,allowingbetter lungs. Thegascausesthepulmonary lungs ofbabieswithsevereproblemsthecirculationbloodaround Nitric oxideThisisadrugwhichdeliveredasgasviatheventilatorto without barotraumaoroxygentoxicity. oxygenated bloodbacktothebaby. ECMOallowsthelungstorestandrecover artificial membranelung(wheregasexchangetakesplace)beforereturning Venous bloodisdrainedviaacannulatomechanicalcircuitcontaining an failure. orcardio-respiratory that helpssupportbabieswithsevererespiratory Extracorporeal membraneoxygenation(ECMO)ECMOisacomplextechnique newborns followingextubation. syndrome, newbornswithapnoeasofprematurityandobstructiveapnoeas, distress can breathespontaneouslybutwhohavemildormoderaterespiratory tubeorendotrachealtube).CPAPpharyngeal isusedtosupportnewborns who (most commonlybynasalprongsandlessviafacemask, during expiration.Warmed, humidifiedair/oxygenisdeliveredviathesystem distension ofthelungsitpreventscollapsealveoliandterminalairways cycle.Throughgentle spontaneously breathingbabythroughouttherespiratory disease. CPAP deliversapositive pressure appliedtotheairwaysofa supporttotreatbothtermandpretermbabieswithrespiratory respiratory CPAP (continuous positiveairwaypressure) Thisisaformofnon-invasive their own,butneedsomeextraoxygen. a baby’s headandsuppliesoxygen.Itisprimarilyforbabieswhocanbreatheon oxygen hoodisusedtoadministeroxygen.Thisaclearplasticboxthatfitsover be dischargedhomewithoxygentherapyvianasalcannulae.Very rarelyan – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – increased, the severity of respiratory diseaseinnewbornshasbeenreduced. increased, theseverityofrespiratory go intopretermlabourandgivingselectedbabiesexogenoussurfactanthas As thepracticeofadministeringantenatalsteroidstomothersthreatening • • • appropriate. Someofthosethatarecommonlyusedinclude: Lines orcathetersareinsertedintobloodvesselsindifferentpartsofthebodyas • • • intravenous andintra-arterialfluids,suchas: Infusion devicesTheseareusedtoprovideaccurateadministrationof transfusion maybenecessary. days. Ifbilirubinlevelsbecometoohigh,onrareoccasionsanexchangeblood Babies withjaundiceusuallyreceivephototherapytreatmentforthreetoseven or thebabymaybelaidontopofabiliblanketthatgivesoutsimilarlight. so fluorescentlights(phototherapy)maybeplacedoverthebaby’s incubator because thelivercannotremoveitfastenough.Bilirubinisbrokendownbylight, Phototherapy Sometimesbilirubincanbuildupinthebloodofnewbornbabies Other equipmentandprocedures or leg. usually done with a Hickman or Broviac catheter into a large vein in the neck Surgically insertedcentrallinesTheseareafterdirectcutdown; vein, usuallyinthearmorleg,toallowintravenousfeeding andmedication. Peripherally insertedcentrallinesAtypeoflinethatisplacedintoa umbilicus. the normalprocessofclosurethesebloodvesselsoccurs toformthe blood, nutrientsandmedications.Onceanumbilicalcatheter isremoved, sickbabies,andareusedtogivefluid, in extremelypretermand/orvery catheters (UVCs)areusedtoreducetheneedforperipheral venousaccess and bloodpressuregasesmonitored.Multiplelumenumbilicalvein (UACs) arethreadedtotheaorta.Throughthis,bloodcanbedrawn catheters have beenusedforsickbabiesmanyyears.Umbilicalartery Umbilical cathetersThesearerelativelyeasytoinsertinnewbornsand total parenteralnutrition. blood productsviaperipheralcannulaoveraprescribedperiod IV/IA medicationbyslowinfusionratherthanbolusinjections

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss

37 The neonatal unit 3 38 3 The neonatal unit

Bliss 2011 3. FurmanL,MinichN,HackM, 2009) 5. OhgiSetal, 4. Ludington-HoeSM,NguyenN,SwinthJY, SatyshurRD, 1. BAPM References transferred fromanincubatortoopencotwithaheatedmattress. overhead heater. Thesecangive easier accesstothebaby. Somebabieswillbe by evaporationfromtheskin.Otherincubatorshaveopentopsandoftenan control thehumidityaroundbabyandsopreventlossoftoomuchmoisture and aroundwhichaircancirculate.Thesekeeptheheatinhelp types ofincubators.Someareclosedboxeswithhand-sizedholesintheside regulation andmayprotectthemfrominfectionsnoise.Therearevarious Placing babiesinincubatorswillhelptokeepthemwarmthroughtemperature Incubators compared to incubators in maintaining body warmth in preterm infants, infants, preterm in warmth body maintaining in incubators to compared birthweight infants birthweight organisation, development, temperament in healthy, low birthweight infants infants birthweight low healthy, in temperament development, organisation, Biological Research for Nursing Nursing for Research Biological through 1 year, Journal of Perinatology Perinatology of Journal year, 1 through 2. DepartmentofHealth, – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Service Standards for Hospitals Providing Neonatal Care Neonatal Providing Hospitals for Standards Service Comparison of Skin-to-skin care and standard care: behavioural behavioural care: standard and care Skin-to-skin of Comparison , Pediatrics,(2002)190(4):e57 Toolkit for High-Quality Neonatal Services Neonatal High-Quality for Toolkit Correlates of lactation in mothers of very low low very of mothers in lactation of Correlates (2000) 2(1):60-73 2002, 22(5):374n Skin-to-skin care care Skin-to-skin (2010) (October 4 Nutrition and feeding issues in the early weeks

4. Nutrition and feeding issues in the early weeks 4 • Preterm babies can be fed on human milk (sometimes fortified), a preterm infant formula, or a combination of these. • Many mothers feel that providing breast milk is the one thing that they alone can do. It is important for the mother to express eight to ten times in 24-hours and once during the night to mimic a baby’s pattern of feeding. • Provision of expressed breast milk to preterm babies has been associated with low rates of a variety of serious illnesses, for example, necrotizing enterocolitis (NEC), and sepsis, which have a high mortality rate.

It is critical for a baby’s healthy development that they receive adequate nutrition according to their size and gestation. Ensuring that the baby’s nutritional intake meets their requirements for growth is a major concern. Preterm babies have higher nutritional requirements per kilogram of body weight than term babies due to their rapid growth rate. Stores of glycogen and fat are built up over the third trimester of pregnancy, so babies born preterm have limited reserves of energy at birth. This means that a source of nutrition is vital from soon after delivery. Establishing an adequate intake can be difficult during a sick baby’s first few days and weeks as they may be unable to tolerate large volumes of nutrition either into their stomach via tube (enterally) or intravenously (parenterally).

Babies’ dietary needs vary, depending on their maturity, nutritional and Nutrition and feeding issues in the early weeks clinical status.1

Feeding practices in preterm and very low birth weight babies can vary widely between and within neonatal units, however there are greater moves to guidelines based on clinical evidence. Feeding and growth often emerge as major areas of concern for parents of preterm babies, both when the baby is in hospital and once he or she has been discharged. This section deals mainly with early feeding and nutritional issues – those encountered in the days and weeks immediately after birth – when many preterm babies will still be in hospital. It also touches on feeding issues that may emerge later (these are dealt with in more detail in Chapter 8, Helping the family at home.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 41 42 4 Nutrition and feeding issues in the early weeks

Bliss 2011 reduce morbidity, forexample,lesssepsis andquickertofullenteralfeeds. condition allows.Thishasbeen showntoencouragegutdevelopmentand milk givenviaanasogastrictube followingbirthassoonthebaby’s clinical Trophic feeds aretinyamountsofenteralfeed,preferablycolostrum or breast Trophic feeds • • of enteralandparenteralnutrition.Parenteralnutritionmay alsobeindicated: or parenteralnutritionmaybegiven.Itiscommonforthere tobeacombination If thesecannotbegivenbymouthbecauseoftheinfant’s condition,intravenous soonafterbirththebabywillneedadequatefluidsandnutrition. Beginning very Parenteral nutrition the stomach(thesearecallednasogastricororogastrictubefeeds). will needtobegiventhroughatubepassedthenoseormouthinto to suckdirectlyfromthebreastorabottle,expressedmilkformula establishing thisco-ordinatedfeedingpattern.Beforeababyismatureenough leave hospitalforhomeatabout35weeksgestationwhentheymaystillbe is masteredbetween32to36weeks’gestation.Manypretermbabiesnow effectively coordinatesuckingwithswallowingandbreathing.Thisco-ordination to swallowfromearlyoningestation,ittakestimeforpretermbabies Although babiesareneurologicallyanddevelopmentallyabletosuck Modes offeeding as asolesourceofnutritionifthegutcannotbeusedforany reason. in enteralfeeds to supportnutritioninpretermbabieswhorequireaslowincrease – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Before a baby starts to take suck feeds there are a number of things that can 4 help support the development of their feeding skills:

• Non-nutritive sucking Non-nutritive sucking is practiced by babies in-utero as they suck on their hands and fingers. It is important to encourage this in the neonatal unit when babies are not yet able to suck feed. This encourages them to practice their sucking and can also provide comfort. Non-nutritive sucking during a tube feed can build an association between sucking and having milk in their stomach and lead to a faster transition to full suck feeds. This can be carried out using a pacifier/dummy or by encouraging the baby to suck at the mother’s emptied breast after she has expressed milk.

• Skin-to-skin contact Bringing the baby out of their incubator or cot during feed times and supporting them to be held skin-to-skin can help both with the mother’s milk production and in the transition to breastfeeding. A mother can learn to identify feeding readiness cues at feed times and encourage licking and tasting milk near the nipple as early feeding experiences during tube feeding.

• Mouth cares with milk Using expressed breast milk or formula when doing mouth care can give a baby early positive taste and smell experiences and encourage the transition to oral feeding. Nutrition and feeding issues in the early weeks

Types of feeds Breast milk Breastfeeding is the best start for all babies and has some specific additional benefits for the preterm infant. Breast milk is the best food for preterm babies as it provides immunologic, antioxidant and nutritional factors that are absent in formula milk. Provision of expressed breast milk to preterm babies has been associated with low rates of a variety of serious illnesses, for example,

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 43 44 4 Nutrition and feeding issues in the early weeks

Bliss 2011 Discussion paper on the use of breast milk fortifiers in the feeding of of feeding the in fortifiers milk breast of use the on paper Discussion preterm infants infants preterm fortified humanmilk. as wellratesofgaininweightandlengtharegreaterthosebabiesfed versus unfortifiedhumanmilkhavefoundthatintakesofproteinandminerals elements andvitaminsforsomepretermbabies.Studiesofinfantsfedfortified Breast milkmaynotprovidesufficientcalcium,phosphorusorprotein,trace Fortifiers milk bankoperatingaccordingtoNICEguidelines. to encouragingbreastfeeding.Donormilkshouldalwaysbeobtainedfroma the gapwhileamother’s milksupplycomesin,andprovidesavital support if babiesarefedformulaearlyon.Theuseofdonormilkcanbeusedtobridge than formula,andcanhelptopreventsomeofthecomplicationsthatfollow sickandpretermbabies give tobabies.Donormilkisbettertoleratedbyvery mothers. Milkdonorsarescreenedandthemilkispasteurisedsoitsafeto Some unitsusebreastmilkthathasbeenexpressedanddonatedbyother Donor breastmilk necrotizing enterocolitis(NEC),andsepsis,whichhaveahighmortalityrate. guideline toensurethatthosebabiesmostinneedareprioritised. not producingsufficientmilkforherbabyandisusuallygivenaccordingtoa requesting it.Donormilkcanbeusedtomakeuptheshortfallifmotheris neonatalunit,howevermostwillreadilytransportmilktounits present inevery advantages incognitivedevelopmentpretermbabies. Increasingly compellingevidencedemonstratesthatbreastmilkimparts for ashorttimeanditisprovidedbytheneonatalunit.(See available onlyinhospital,however, somebabiesaredischargedonfortifier with oneofseveralavailablebreastmilkfortifiersbeforefeedings.Fortifiersare – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – for moreinformation). 7 Forthesereasons,breastmilkmayneedtobemixed 5 Donormilkbanksarenot 4

Bliss Briefings – – Briefings Bliss 6

2,3

Formula milk 4 If the baby is not being fed on breast milk, specially formulated preterm formulas will be used. Formulas used for term babies are not suitable for preterm babies. If the preterm baby needs more breast milk than is available, and they are not in a high risk group which would benefit from donor milk, the shortfall can be made up with preterm infant formula. If a baby is on any formula at discharge they are usually changed to a post discharge formula designed for preterm babies, to ensure continued catch up growth and replenishment of nutritional status. This formula can be given for three to six months post estimated date of delivery and can be prescribed in the community. Preterm babies may therefore be fed on human milk (sometimes fortified), a preterm infant formula, or a combination of these.

Supporting the mother to breastfeed You can support and encourage mothers who are expressing breast milk in a variety of ways: ✔✔ Encouraging mothers to look after their own health and ensure that they take sufficient rest and follow a healthy diet. ✔✔ Providing consistent support and advice. Conflicting advice can undermine confidence - we recommend the BlissBreastfeeding your preterm baby booklet which has the up-to-date evidence based advice

for mothers of preterm babies. Nutrition and feeding issues in the early weeks ✔✔ Providing mothers with or helping them to access the equipment needed to facilitate expressing at home, storing and transporting of their milk. ✔✔ Facilitating contact with a breastfeeding counsellor who can give them practical advice and emotional support.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 45 46 4 Nutrition and feeding issues in the early weeks

Bliss 2011 the future. pattern offeedingandworktoproducethevolumemilkbabywillneedfor eight totentimesin24-hoursandonceduringthenightmimicababy’s is theonethingthattheyalonecando.Itimportantformothertoexpress taken overcaringfortheirbaby, manymothersfeelthatprovidingbreastmilk milk productionisinitiated.Atatimewhenmedicalstaffcanappeartohave ifpossibletoensurecolostrumisremovedand can, withinsixhoursofdelivery are encouragedtoexpressbreastmilkfortheirpretermbabiesassoonthey In viewofthemanybenefitsassociatedwithfeedingbreastmilk,mothers edition, 2010)whichwillbehelpfulforparents. Bliss hasproducedabooklet you andotherneonatalstaff. transition fromtubefeedstobreastfeedingmayneverthelessneedsupport For motherswhohavesucceededinlactationusinganelectricpump,the flow ofbreastmilkwhenusinganelectricpump. a pieceofclothingthatthebabyhaswornmayprovebeneficialinimproving has shownthathavingaphotographofthebabynearbyorholdingandsmelling or stimulationoftheirbaby, mayfinditdifficulttoproduceenoughmilk.Research Mothers whohavetoexpressmilkathomeorinaroom,withoutthepresence Encouraging theexpression ofbreast milk can alsohelptostimulatethemother’s breastmilkproduction. baby atthecotside.Itisbecomingincreasinglyrecognisedthatskin-to-skincare able toprovideportablepumpsandscreenssoamothercanexpressnexther The milkflowmayalsoimproveifthebabyisclosetomother. Someunitsare – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 10 Breastfeeding your preterm baby preterm your Breastfeeding 8

9 (Blissseventh The baby’s growth 4 Early postnatal increases in weight, head circumference and length will be measured and the baby’s weight will be plotted on a preterm centile chart to monitor growth velocities. After discharge the frequency of weighing and the measuring of the baby’s length is negotiable depending on the baby’s progress. There is no established standard of growth for the first 28 days of life although all babies have an initial weight loss: this can be up to 12 per cent in very immature babies and is usually not a cause for concern. Healthy preterm babies will catch up to their birth weight within one to three weeks; however, they may not be expected to catch up to grow along their birth centile as the initial weight loss is primarily extracellular water which they are not expected to regain. Weighing procedures may cause stress and anxiety to parents, as growth may initially be very gradual.11

It is important, therefore, that you strike the right balance between reassuring Nutrition and feeding issues in the early weeks parents that their baby is doing well and being alert to any significant growth problems that may need addressing by the appropriate health professionals. Any concerns about growth will be referred to the paediatrician or dietitian. Issues around growth may also be associated with feeding itself. It is not unusual for preterm babies to have uncoordinated feeding patterns until they have reached term gestational age. Early negative oral experiences, such as intubation and suctioning, increase the potential for aversive feeding behaviours. It is recommended that a paediatric dietitian and speech and language therapist be part of the neonatal unit team to monitor the baby’s progress while they are on the unit and following the baby’s discharge. Some units may also use the services of community therapists following discharge.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 47 48 4 Nutrition and feeding issues in the early weeks

Bliss 2011 11. Carver JDetal, 11. Carver 2005 7. KuschelandHarding2004 International, Formula After Hospital Discharge Discharge Hospital After Formula low birth weight infants risk of necrotizing enterocolitis or death or enterocolitis necrotizing of risk infants weight birth low Norwegian national cohort of extremely preterm infants receiving very early full full early very receiving infants preterm extremely of cohort national Norwegian 10. JonesE,KingC, birthweight infants2002Pediatrics190(4):e57 low 9. FurmanL,MinichN,HackM,Correlatesoflactationinmothers ofvery quotient, brain size and white matter development matter white and size brain quotient, 6. Arslanoglu,etal,2010. 5. NICEFeb2010Guideline93. 4. Isaacsetal2010PedRes67:357-362. 3. Ronnestadetal2005,Pediatrics115:269-276. 2. Meinzen-Derretal2009,JPerinatol29:57-62. 1. Agostonietal2010, References milk bank services bank milk growth in preterm infants. Cochrane Database of Systematic Reviews. Issue 1. 1. Issue Reviews. Systematic of Database Cochrane infants. preterm in growth and recommendations. Journal of Perinatal Medicine. Medicine. Perinatal of Journal recommendations. and vol 50 :1-9. Enteral Nutrient supply for Preterm Infants: commentary from the the from commentary Infants: Preterm for supply Nutrient Enteral :1-9. 50 vol human milk feeding milk human European society for paediatric gastroenterology hepatology and nutrition nutrition and hepatology gastroenterology paediatric for society European Committee on nutrition on Committee 8. MohrbacherB,StockJ, No: CD000343 – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 1991 Growth of Preterm Infants Fed Nutrient-Enriched or Term Term or Nutrient-Enriched Fed Infants Preterm of Growth Feeding and Nutrition in the preterm infant infant preterm the in Nutrition and Feeding Journal of Pediatric Gastroenterology and Nutrition Nutrition and Gastroenterology Pediatric of Journal The Breastfeeding Answer Book Answer Breastfeeding The Donor human milk in preterm infant feeding: evidence evidence feeding: infant preterm in milk human Donor Multicomponent fortified human milk for promoting promoting for milk human fortified Multicomponent Donor breast milk banks: the operation of donor donor of operation the banks: milk breast Donor Pediatrics Impact of breast milk on intelligence intelligence on milk breast of Impact

2001; 107:4,683-689 Late-onset septicemia in a a in septicemia Late-onset Role of human milk in extremely extremely in milk human of Role 38:347-51 (p77) Elsevier Press, La Leche League League Leche La Art 5 Multiple Births

including pretermlabourandbirth. foetuses areassociatedwithincreasedrisksforboththemotherandbabies will increase.Comparedwithsingletonpregnancies,pregnanciesmultiple continual improvementsinthecareofpretermbabies,itislikelythatthisnumber fertility techniquesandmothersdelayingpregnancyuntillaterinlifealongwith Each yearintheUKtherearemorethan10,000multiplebirths.Withadvanced • • • 5. Multiplebirths cradle thembothinherlap.She shouldsitwellsupportedandfeelcomfortable one thatsuitsthemthebest.If thebabiesarestilltiny, themothermaybeableto Mothers mayneedtoexperiment withseveralbreastfeedingpositionstofindthe Feeding positions information forparents. leaflets onbreastfeedingforhealthprofessionalswhile Tamba providesuseful guideline onfeedingbabiesfrommultiplebirthsandalsoprovide other Births Foundation(MBF)andtheNCT. TheMBFhavepublishedacomprehensive support fromtheTwins andMultipleBirths Association(Tamba), theMultiple breastfeed twinsormultiplebabies.Motherscanalsoobtain adviceand counsellor toprovidetheappropriatesupportamotherwho wantsto You mayneedtogainadditionalknowledgeandskillsfromabreastfeeding Breastfeeding Feeding can be very demandingforparentsemotionally,can bevery physically, andfinancially. regarding this.Followingdischargefromhospital,caringformorethanonebaby Alternatively, thehospitalmaytakeintoaccountparents’preferences remain withhisorhersiblingsinhospitaluntiltheyareallfittobedischarged. hospital atdifferenttimesandhospitalsdifferonwhetherawellbabyshould be caredforinseparatehospitals.Siblingsmayalsoreadydischargefrom needs ofsiblings,orlocalcapacityissues,oftenmeanthatthebabiesneedto Parents arelikelytoexperienceadditionalstrainandstressasthemedical depression. that mothersofmultipleshavealmosttwicetheaverageriskpostnatal signposting toothersupportagencies,areessential.Studieshavefound Continuing supportandpracticalsuggestionsfromyou,aswell breastfeed twinsormultiplebabies. counsellor toprovidetheappropriatesupportamotherwhowants You may need to gain additional knowledge and skills from a breast feeding children aswell. significantly relievepressureonparents,especiallyforthosewhohaveother weeks, ifthevisitingcommunityneonatalnurseisnotdoingso,can A simplethinglikeofferingtoweighthebabiesathomeforfirstfew

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Bliss 2011 Help andsupport a formulafeed,andalternatethebabieswithbreastmilk. with formula,themothermayprefertobreastfeedonebabywhileotherhas may findthatseparatefeedsareeasier. Ifbreastfeedingisbeingsupplemented tuck thebaby’s legsunderherarmsandcradletheirheadsastheyfeed.She equipment closeathand.Alternatively,with allthenecessary themothercan twins clubandtheNCTalsorun nearlynewsales. available throughlocaltwinsclubs sales.Tamba willhavedetailsof the nearest Good qualitysecond-handequipment (includingcotsandtwinbuggies)maybe 0800 882200orfromMaternity Action,orthelocalCitizensAdviceBureau. Lineon Further informationonthesecanbeobtainedfromtheBenefit Enquiry Depending ontheirincome,theymay, however, beentitledtostatebenefits. grants, apartfromthenormalentitlementofchildbenefitfor allchildren. Parents oftwinsormultiplebabiesarenotentitledtoadditional benefitsor support tomothers. nurses,theycanalsoproveinvaluableinofferingcontinuing employs nursery a nannyormaternitynursecanbeemployed.Ifthelocalhealth organisation experience placementswithfamilies.Alternatively, ifthefamilycanafford it, In someareaschildcareandeducationstudentsmaybelooking forwork can offer. intheamountoffamilysupportthey departmentsvary lives, whilesocialservices birth children.Theavailabilityofadditionalhelpwilldependonwherethefamily entitlementtohelpinthehomeforfamilieswithmultiple There isnostatutory – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – multiple birth. carers whohaveexperiencedthedeathofoneormorebabiesfroma The Tamba BereavementSupportGroup(BSG)existstosupportallparentsand When atwinortripletdies baby maynot. hayfever, onebabymayinherit ormoreoftheseconditionswhiletheother problems thantheother(s).Ifthereareallergiesinfamily, suchaseczemaor One babymaybedevelopmentallydelayedorhavemoreserioushealth weight betweenidenticaltwinshowevertheyoftenevenupasyearspass). discordant physicalgrowth(theretendstobeagreaterdiscrepancyinbirth particular developmentalmilestones.Parentsareoftenconcernedabout for theretobeagapofweeksorevenmonthsbetweenthebabiesreaching twins maywalkwithinafewdaysofeachother. Itisequallynormal,however, Twins andmultiplebabiesmaydevelopatasimilarrate,forexample,identical Health anddevelopment and allowparentsthetimetomeetshareexperiences. the opportunitytomeetotherparents.Localtwinsclubscanalsooffersupport multiple births,suchasTamba andtheMBF, whichofferadvice,informationand be informedaboutsupportgroupsandorganisationsforparentswithtwins as wellsignpostingtoothersupportagenciesareessential.Mothersshould of postnataldepression.Continuingsupportandpracticalsuggestionsfromyou Studies havefoundthatmothersofmultiplesalmosttwicetheaveragerisk The possibilityofdepression

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Bliss 2011 302: 75-8 Fraser, E.(2009) Sterility, 84(2):426-30 Linney, J.(1983) Thorpe, K.Golding,J.MacGillivray, I.andGreenwood,R.(1991)‘ prevalence of depression in mothers of twins and mothers of singletons’ of mothers and twins of mothers in depression of prevalence Garel, M.,Salobir, C.,Blondel,B.(1997) Fraser, E.(2009) Fisher, J.,Hammarberg,K.andBaker, H.(2005)‘ Robin, M.,Bydlowski,Cahen,F. andJosse,D.(1991)‘ Scutari Press Cooper, C.(2004) Useful information 1. RebarRW, DeCherneyAH, References triplets: a 4-year follow-up study’ Fertility and Sterility and Fertility study’ follow-up 4-year a triplets: States. New England Journal of Medicine. of Journal England New States. factor for postnatal mood disturbance and early parenting difficulties’, parenting early and disturbance mood postnatal for factor the birth of triplets’ of birth the Pregnancy Guide Pregnancy Care NHS Natal Post and to Adulthood to – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – , London:RandomHouse Multiple Births: Preparation - Birth - Managing Afterwards, Afterwards, Managing - Birth - Preparation Births: Multiple Expecting Twins, Triplets or More? The Healthy Multiple Multiple Healthy The More? or Pre Triplets of Twins, Experience Expecting Triplets and Twins of Parents’ Failings: Multiple , Guildford:Tamba Twins & Multiple Births – The Essential Guide from Pregnancy Pregnancy from Guide Essential The – Births Multiple & Twins . ActaGeneticaeMedicaeetGemellologiae.40:41-51 , Guildford:Tamba Assisted Reproductive Technology in the United United the in Technology Reproductive Assisted ‘Psychological consequences of having having of consequences ‘Psychological 2004;350(16)1603-1604 Assisted conception is a risk risk a is conception Assisted , 67(6):1162-1165 Maternal reactions to to reactions Maternal Comparison of of Comparison Fertility& . BMJ, 6 Bereavement

and healthprofessionalsunderstandthesignificanceoftheirloss. seen himorher, itmaybeparticularly importanttoparentsthatfriends,family died. Incircumstanceswhenababyhasnotcomehomeandnooneelse reactions, whicharelikelytobeespeciallydistressingbecausetheirbabyhas Mothers willexperienceallthenormalphysicalandemotionalpostnatal parent willreactdifferentlytothedeathofababy. needs, andeachindividualfamilywilldealwithgriefintheirownway. Each different willhavevery assume thatyouknowthebestwaytohelp.Everyone bereaved familiesthatyoutaketheleadfromfamilymembers,anddonot the abilityofparentstoresumeanormallife.Itisimportantwhensupporting this timemayaffecttheseverityanddurationofparentalgrieving,aswell child dies,canhavelifelongrepercussions.Goodcareshowntotheparentsat to parentsinthehospitalandcommunity, justbeforeandaftera child hasdied.However, experience hasshownthatthecarewhichisgiven There islittleanyonecansayordotohelpeasethepainfeltbyaparentwhose • • 6. Bereavement it difficulttobelievethattheir baby isnolongerwiththemanditmayseemasif itwiththemfortherestoftheirlife.Infirstfewdays, parentsmayfind carry than mostpeopleexpect.Parents arelikelyto‘contain’theexperienceand The griefthatcomesfromlosing ababycanbemuchdeeperandlastlonger How longdoesgrieflast? Understanding grief appropriate support. toensurethehealthteamhasacompletepictureandisoffering be necessary may followdifferentcustoms.Aprofessionalinterpreter(never usechildren)may undertaken withinparticulartimescales.Withinonereligion, differentgroups This canrangefromhowopenlypeoplegrievetospecificrituals thatmustbe of ways,andmanypracticescustomsneedtobesupported andrespected. People fromdifferentculturesandreligionsdealwithdeath andgriefinavariety Recognising differingneeds how theyarecopingandlistenshouldwishtospeakaboutit. support fromfamilyandfriends,youwillbeideallyplacedtoaskfamilies hospital’s whentheremaybe less direct care.Followingthefuneral service, You havean important roletoplayinsupportingthefamilybeyond family. will helptorecognisetheirroleasparentsandtheplaceofbabyin always willbe.Your acknowledgementthattheirbabywasarealperson important time,thisbabywaspartoftheirfamilyand the factthat,foravery Parents maychoosetokeepmementoesoftheirbaby’s lifeinrecognitionof

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Bliss 2011 babyorbabies. surviving practical advice,suchasencouragingthemothertocontinue breastfeedingthe twinortriplets.Itisimportantthatyouprovidesupportand needs ofthesurviving parents willhavetodealwiththeirowngriefaswellcontinuing tomeetthe To hisorherparents,anybabywhodies isanirreplaceableindividual,andthe When atwinortripletdies parents supportwhentheirbabydiesduringpregnancyor afterbirth. Sands, thestillbirthandneonataldeathcharity, isanorganisationwhich canoffer them tofeellessisolatedandseethattheirfeelingsareentirelyappropriate. seeking help.Talking thingsthroughwithsomeonewhounderstandsmayhelp appear ‘stuck’intheirgrief,forexample),itcanbebeneficialtotalkthemabout a parent,orbelievethatsomeonemaybeexperiencingabnormalgrief(ifthey The griefprocesswillnaturallytakeitscourse,butifyouareconcernedabout Abnormal grief perfectly normal. less.Allthesefeelingsare had lettheirbabydownwhentheystartedcrying grief becomeslessraw. Forexample,someparentshavesaidthattheyfelt after theirbaby. Othercommonemotionsincludeself-blame,particularlyasthe may directthisatthemselves,lovedonesorthehealthprofessionalsthatlooked their tinybabyfromdying.Angerissometimesareactionatthistimeandparents a feelingoffailureandoftenfeelguilty–asiftheyshouldhavebeenabletostop As thegrievingprocessprogresses,parents,especiallymothers,mayexperience or change. maternal urgescanbecommon.Itseemasifthepainisnevergoingtostop powerful – theymayfeel,hearorseesomethingthatcannotexplainandvery overwhelmed andfrightenedbytheintensityoftheiremotionalphysicalpain to makedecisionsorimaginehowtheyaregoingcope.Oftenparentsfeel disorientated, isolatedandexhausted.Theymayfindithardtotakeininformation, overwhelming andparents,theirfamiliesfriendscanbeleftfeelingdazed, The deathofababyisdevastatingexperience.effectsgriefcanbe Emotional impact ‘getting better’. the painatitsworstjustwhenyou,andothers,thinkthatitshouldbe they areinabaddream.Therealitywillslowlyunfoldandparentsmayexperience support groupsforfatherswho arebringingupchildrenalone. Bereavement supportandone-parent organisationscanbeuseful.Therearealso children. Supportfromyou,their family, and friendswillbeessentialatthistime. or herownreactions,aswell as continuingtomeettheneedsofchildor parentwillhavetodealwithhis When oneoftheparentsdies,surviving When aparentdies – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Palliative care Palliative care andendoflifecare so thatparentshaveaplaceto keepspecialreminders.Manyparentsgather Some neonatalunitsgiveparents a‘journeybox’whentheirbabyisadmitted for onefamilywillbeappropriate forall. for allreligionsandcultures itisimportantnottoassumethatwhatright However, itisimportanttorememberthatthesethingsmaynot beappropriate also be given a memento card with a foot print or a hand print and a lock of hair. for parentstobringhomewiththemortakeawayatalater date.Parentsmay Most neonatalunitswilltakeaphotoofthebaby(with parents’ permission) was partoftheirfamilyandalwayswillbe. importanttime,thisbaby different ways,inrecognitionofthefactthat,foravery with theirbaby. Parentsmaychoosetokeepmementoesoftheirbaby’s lifein Memories arepreciousforparentsandsothemoments thattheyhad Making memories their baby. and that–ifappropriateparentsaresupportedinprovidingnursingcarefor carers andfamiliesareinfullagreementaboutthemanagementofbaby, information toparentsabouttheconditionandtreatmentoftheirbaby, that You canhelp byensuringthatneonatalstaffprovidehonestandcomprehensive less involved. were moreabletocometermswiththeirlossthanthoseparentswho that thoseparentswhobecameinvolvedintheirbaby’s careandlosttheirbaby parents areencouragedtobeinvolvedintheirbaby’s care.Researchhasshown important,whatevertheprognosis,that uncertain fromthestart.Itisvery early,The outcomesforpretermbabies,especiallythosebornvery canbe End oflifecare lot ofsupporttoo,bothnowandinthefuture. caring forchildrenwithlife-limitingconditionsandtheycanoffereachfamilya skilledat surroundings thanahospital.Peopleworkinginhospicearevery place theirbabycanreceivepalliativecare.Ahospiceoffersmorehome-like If parentsliveinanareawithachildren’s hospice,thismightbeanother take theirbabyhomeandgethelpcaringforhimorherfromvisitingnurses. might beinthehospital,preferablyaquiet,privatearea.Theywantto Parents shouldbeabletochoosewheretheirbabyreceivespalliativecare.This as painrelief,comfortmeasuresandsupportforthefamilyarealwaysoffered. are alsoofferedcontinuingsupport,evenafterthebabyhasdied.Aspectssuch Palliative careaimstokeepbabiescomfortableandcontrolsymptoms.Families

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Bliss 2011 they needtotalktheirdoctor. children’s health.Again,thisreactionusuallyfadeswithtime.Ifitdoesnot,then mothers, tobecomeobsessedwiththeirown,partner’s ortheirother Finally, itisnotanunusualphenomenonforbereavedparents,particularly engorgement canbepainful,ifso,encouragethemtoask a midwifeforadvice. can besuppressedbymedicationmanywomendecidenot totakethis.Breast A bereavedmother’s breastsmaystillfillwithmilk.Althoughmilkproduction short walkinthefreshair. better. togetabitofexercise,perhaps Ifappropriate,encourageparentstotry their babyis.Howeverthosethatdogooutgenerallysay itmakesthemfeel the ideaofseeingothers’babies,orhavingtoexplainan acquaintancewhere difficulttoleavethehouse,andmaydread Many bereavedparentsfinditvery the emotionalaspectsbetteriftheyarephysicallystronger. their generalphysicalhealthbacktonormal–astheywillbeablecopewith excessive, encouragetheparenttotalktheirGP. Itisimportantthattheyget bereavement, lossofappetiteandweightarenotunusual;however, ifitis Parents maynotfeellikeeatingordrinkingbutneedtodoso.Afterany mother hasattendedhersix-weekpostnatalcheck. exhausted. Sleepmaybedifficultforawhile.Itisimportanttomakesurethatthe They maybepronetolotsofviralinfectionssuchascoldsorfeelphysically It maytakemotherslongertorecoverfromthebirththanwouldbeexpected. themselves physicallyafterthebirth. toencourageparents(andmothersinparticular)lookafter It isimportanttotry Health concerns Here aresomeitemsthatparentsoftenkeep: may becomeanimportantpartofthememoriestheyreturntoinfuture. importanttoparentsand admitted. Thesesignificantobjectscanbecomevery keepsakes oftheirbaby’s timeinhospital,startingwhentheyarefirstbornor considerations surroundinga deathcanbeextremelydifficultforgrieving helpfultobereavedfamilies.Themany practical Information canbevery Practical information – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – • • • • • • • • a diary, poemsornotesthattheyjotteddown. cards andlettersfromfamilyfriends cardiac monitorstickerorsyringe handprints orfootprints a hatorspecialclothing photographs ofthem,theirbabyandfamilytogether the baby’s nametagandbonnet a hospitalbraceletorcotcard Registering aneonataldeath through thisprocesscanbeinvaluable. relatives andclosefamilyfriendstotakeinretain.Helpguidance results areusually discussedwithparentsat thehospital,andalthoughsome stressful. The Many parentsfindwaitingfor thepost-mortemresultsvery ensure thattheseitemsstaywith thebabyandarereturnedwithhimorher. in aspecialshawl,orplace small cuddlytoywithhimorher. The staffshould mortem results.Beforethepost-mortem, someparentsdressorwraptheirbaby post-mortem examinationiscompleted. Thereisnoneedtowaitforthepost- varies considerablyaroundtheUK).Thefuneralcanbeheld assoonthe may besomedelaybeforetheirbaby’s funeralcantakeplace(thetimerequired If apost-mortemistobeundertakentheparentsneedunderstand thatthere the placenta. external examinationofthebaby, bloodtests,orjustanexaminationof have afullpost-mortemexamination,theycanaskforpartial post-mortem,an they needtofindoutwhytheirbabydied.Ifparentsdon’t want theirbabyto religious reasons,whileothersagree,inspiteofteaching, because those whowishfortheirbabytobeleftinpeace.Somerefuse post-mortemfor be difficultforparentstodecidewhetherhaveapost-mortem andthereare the parent’s knowledgeandconsent(calledauthorisationinScotland).Itcan a babycannotbecarriedout,andthebaby’s organscannotbekept,without same thinghappeninginafuturepregnancy. Apost-mortemexaminationon identified byearliertestsandinvestigations,helptoassesstheriskof may helpdiscoverwhyababydied.Itconfirmanyproblemsthatwere A postmortemexaminationofthebaby’s bodyandoftheplacenta(afterbirth) Post-mortems cremation. Anyitemsthatareremovedshouldbereturnedtotheparents. the crematoriumstaffmayremovesomeitemsfromcoffinbefore a letterorpoemasmemento.However, ifababyisgoingtobecremated, soft toy, aletter orapoem.Someparentskeepanidenticaloutfit,shawl,toy, to askthefuneraldirectorputspecialitemsintotheirbaby’s coffin,suchasa dressed inaparticularoutfitorwrappedspecialshawl.Theymayalsowant can arrangethefuneralthemselves.Parentsmaychoosetohavetheirbaby Scotland offertoarrangeandpayforafuneralbaby. Alternativelyparents a funeralbutthisisnotrequiredbylaw. ManyhospitalsinEngland,Wales and buried orcremated.Ababywhowasborndeadbefore24weekscanalsohave at anystageofpregnancyandthendied,heorshemust,bylaw, beformally If ababywasstillbornafter24completedweeksofpregnancy, orwasbornalive Funerals death, oramemberofthehospitalstaffcanregister. can registerthedeath,anotherrelative,someoneelsewhowaspresentat has notyetbeenregistered,thiscanbedoneatthesametime.Ifneitherparent parents orbyjustoneparent,whethernottheyaremarried.Ifthebaby’s birth If ababyisbornaliveandthendies,thedeathcanberegisteredbyboth

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Bliss 2011 Sudden infantdeath:‘Backtosleep’campaign something. doing and ahead going just than rather support offer to) and talk to else anyone have not may they (as parents the and staff to listen to time or informalsupport.Itisimportanttomakethe on thestaffandparentsofotherbabiesunitwhomay needeitherformal The deathofababywhoisstillintheneonatalunitmayhave aprofoundimpact Other parentsandstaffontheneonatalunit frequent changes. government agencies,insomecasesbyemployersandaresubjectto to. Maternityandpaternitybenefitsarecomplicated,administeredbyseveral that theyfindoutaboutalltherightsandbenefitsmaybeentitled Many bereavedfamiliesfaceunexpectedfinancialstrain,anditisimportant Financial support neonatologist, anditisimportanttoencourageparentsattendthis. Thereisalsousuallyabereavementfollow-upappointmentwith service. counsellors attachedtothem,orparentscanbereferredtheBlisscounselling to supportgroupsormedication.Somehospitalshavebereavement isneeded,suchascounselling,referral to recognisewhenotherintervention and beabletolistenshouldtheywishspeakaboutit.Itisalsoimportant family andfriends,youwillbeideallyplacedtoaskfamilieshowtheyarecoping whentheremaybelessdirectsupportfrom care. Followingthefuneralservice, You havean importantroletoplayinsupportingthefamilybeyondhospital’s Follow-up support no reasonforthebaby’s death. some cluesastowhytheirbabydied.However, insomecasesdoctorscanfind have highexpectationsofthepost-mortemandhopethatresultswillprovide will offertheparentsanappointmentwithageneticcounsellor. Manyparents hospital toaskforone.Ifageneticabnormalityhasbeenfound,theconsultant mother’s GP. Ifparentswant theirownfullcopy, themothercanwriteto ofthepost-mortemresults, whilethefullreportwillbesentto summary to encouragethemattendthismeeting.Parentswillnormallybegivena people findithardtogobacktheplacewheretheirbabydied,isimportant are availablefromtheFoundation fortheStudyofInfantDeaths(FSID). are involvedwiththefamilyof ababywhohasdiedsuddenlyandunexpectedly baby hasdiedareessential.Guidelines forcommunityhealthprofessionalswho and theprovisionofpractical support tothefamilyassoonpossibleafter can beparticularlyhardforparents todealwith.Acknowledgementofthedeath when theirbabywasintheneonatalunit,suddendeath oftheirbabylater theanxioustime birthweight areknownriskfactorsforSIDS,butaftersurviving of unexplaineddeathsbabiesinwesterncountries.Prematurity and/orlow Sudden infantdeathsyndrome(SIDS)continuestobethemost commoncause – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Fathers Other familymembers concentration, bullying, beingaggressiveand refusingtogoschool. include behaviourchangessuch asbecomingwithdrawn,bed-wetting,lackof to believetheyarenotaffected bythedeath.Normalsignsofgriefinchildren not showtheirfeelingsopenly, andanapparent lackofsadnessmayleadadults Older childrenmayexperience feelingssuchasshockanddisbelief.Theymay Schoolchildren physical closeness,holdingandcuddlesfromtheirparents. Ifpossible,theyshouldhavelotsof affected bythelossoftheir‘otherhalf’. fornoobviousreason.Twinsdisturbed sleeppatternsorcrying areespecially will reacttothosearoundthem.Theymayshowdistressthrough weightloss, Babies andtoddlersmaybedeeplyaffectedbytheirparents’ emotionsand Babies andtoddlers • • • grief included: A recentstudyfoundthatthemostimportantthingsindealing withachild’s sister, so explaining the death in terms of ‘it was nobody’s important. fault’ is very stage mostchildrenblamethemselvesforthedeathoftheirbabybrotheror to encouragechildrenshowtheiremotions,likewiseletthemcry. Atsome talk naturallyaboutthebabywhohasdiedandhowtheyfeel.Donotbeafraid for childrentoexpressthemselves,eitherinhospitalorathome,wheretheycan coping withthem.You canhelpparentstocreateanappropriateenvironment as theirown.Childrendonotneedprotectingfromfeelings,butsupportin died. Duringthistimetheywillbesupportingthechildthroughtheirgrief,aswell extremely difficulttoexplaintheirotherchildrenwhybrotherorsisterhas other childrenifthenewbabysiblingisnotexpectedtolive.Parentscanfindit confusion, angerandguilt,itisgenerallyhelpfulifparentscanpreparetheir Children alsogrieve,experiencingsimilarfeelingstoadultssuchasshock, Sibling issues his ownifhefearsthatwhatsayswilldistresspartner. own griefandconcernsareacknowledged.Itmaybehelpfultotalkhimon important thatyouaskthefatherdirectlyhowheisfeeling,andensurehis happen afterthefuneral,ifthereisone,orpossiblymanyweekslater. Itis the deathofbaby, butmanymenneedtimeandspacetogrieve.Thismay their emotionsandfeelingsopenly. To somethismaylooklikeindifferenceto differently, and evenintoday’s society, somemenmayfind itdifficulttoexpress surrounding theirpartner. Itisnot unusualformenandwomentogrieve have justasmuchtocopewith–suchtheirowngriefwellworries condition ofthemother. Fatherscan oftengetforgotten,eventhoughtheymay When ababydiesatbirth,therewillinevitablybeconcernsaboutthemedical keeping the memory ofthebabyaliveinfamily.keeping thememory including thechildinfamilyrituals recognising andacknowledgingtheirgrief

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Bliss 2011 www.nice.org.uk/cg45 NICE guidelinesonantenatalandpostnatalmentalhealth www.uk-sands.org.uk Sands, thestillbirthandneonataldeathcharity Useful information around accesstogeneticcounsellingorfertilitycounselling. discuss allconcernswithanobstetrician,andinsomecasesprovidingadvice during whatcanbeaterrifyingtime.Thisincludesencouragingparentsto the parentsthoughsubsequentpregnanciesandbirthsisparticularlyimportant sexual relations,andrealfearsaboutthehealthofanyfuturebabies.Supporting for parents.Theremaybepossibledifficultieswiththerelationshipand/or Planning for, orhavinganotherpregnancy canbeadifficultandemotionaltime Future pregnancies tobeaware. you shouldtry events. Thesemaybesignificantmilestonesexperiencedbytheparentsofwhich confused thoughts,tearsofjoyandsadnessordifficultiesinseparatingthetwo of anotherbaby’s death,parents mayexperiencemanyconflictingfeelings: or multiples’birthdays.Ifanewbaby’s birthdayisclosetotheanniversary twin painful. Parentsmayalsoexperiencedifficultiesincelebratingsurviving baby’s birthanddeath,NewYear andotherimportantreligiousdatesparticularly ofthe Parents mayfindfamilybirthdaysandspecialoccasions,theanniversary Anniversaries – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 7 Going home 66 6 Bereavement

Bliss 2011 – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Issues whichcauseconcernforparents You canofferarangeofpracticaladviceandemotionalsupportinthissituation. break fromtherelativesafetyofneonatalunit. unit tohome,itisalsoessentialgiveparentssufficienttimeprepareforthe available toanswerquestions.To ensureasmoothtransitionforthebabyfrom receiving ahighlevelofsupportintheunitandhavinghealthprofessionals During theirbaby’s journeythrough neonatalcare,parentswillgrowusedto • • • 7. Goinghome psychologically andpracticallyunpreparedforthenewchallenges athome. due date,aredeniedthisperiodofadjustmentandoftenfeel emotionally, Parents whosebabyorbabiesaredischargedunexpectedly, orbefore their earlier iftheyprogresswell. hospital isaroundthebaby’s expected dateofbirth,babiescanoftenbeready Although parentsareusuallyadvisedearlyonthatthetimeofdischargefrom Areas forparents ofconcern Sarah, motherofEllenMay, 24weeks she wasdoingreally well.” upset whenEllengottransferred tomylocalSCBUeventhough on theintensivecare unit staff asmyownfamily, andwasactually “The staff were Icametolook excellentandkeptuswellinformed. • • • • • • • • • and postdischargeinclude: provided withinthehome. treatment and/ormonitoring,orthatthecarerequiredissuchitcanbe confirmed whentheyaresatisfiedthatthebabynolongerneedsmedical The baby’s dischargedatewillbe assessedbystaff,andwillonlybe tremendous reassurance. familiar withtheirsituationandcanprovidehelpadvice,givesparents Meeting youbeforetheirbabyisdischarged,andknowingthatare well asgreatrelief. Planning totaketheirbabyhomecancauseparentsprofoundanxietyas social isolation. postnatal depression and accesstoadviceoncethey areathomewiththeirbaby developmental progressand uncertainty aboutthefuturepathwaysofhelp temperature control administering medicationsand/or managingsideeffects risk ofinfection identifying andcopingwithhealthproblemsoremergencies feeling differentfromotherfamilies feeding andgrowth

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Bliss 2011 experience intakingcareofall ofthebaby’s needsbeforedischarge. them abriefstayinhospital roomwiththebabysotheycangainsome Some hospitalsofferparentsof pretermbabiesarooming-inperiodthatallows training. with theserequirementsconfidence.Thisshouldinclude basicresuscitation support, isallowedtogohome,thefamilywillneedsufficient trainingtodeal Before ababywithspecialrequirements,suchastubefeeding orbreathing hospital untiltheirconditionisstable. needs suchasfeedingproblemsoroxygenrequirementswill needtostayin criterion fordeterminingreadinessdischarge.Othersbabies, whohavespecial will bedischargedafewweeksbeforetheirduedate.Weight isnotauseful Some babieswhoarefeedingwell,gainingweightandhave nootherproblems before goinghome. temperature, thebabywillneedtomaketransitionfrom incubatortoopencot As oneofthekeycriteriafordischargingpretermbabiesistheirabilitytomaintain baby’s feedingpatternsandthenecessity foranyspecialmedicaltreatments. temperature andwhetherornotthiscansuccessfullybemaintainedathome,the is assessed,takingintoaccountfactorssuchasthestabilityofbaby’s In ordertodeterminethebaby’s discharge date,thebaby’s overallprogress When canthebabygohome? – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 3 says Emma. happiness andextremeanxiety,” weekend homewasmixedwithextreme a hugesteptotakeonourown.Thatfirst bit longerImighthavesaidyes.Itfeltlike me thatdayifwewantedtostayalittle “I havetobehonest:ifthey’dasked family andhealthvisitor. experience. BothEmmaandMichaelrequiredessentialsupportfromtheir and specialfeedingrequirements,takinghimhomewasadaunting take theirlittleboyhome.Oliverwasdischargedwithnumerousmedicines Friday afternoonattheunitwaitingfortestresultstoseeiftheycouldfinally Emma andMichaelspentananxious Eleven weeksaftertheirsonwasborn, gastroesophageal reflux. hydrocephalus andsevere bleed onthebrain,anddeveloped haemorrhage,a a pulmonary 28 weeksgestationhesuffered After babyOliverwasbornat Emma andMichael’s story

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Bliss 2011 or dietitianasappropriate. growth, youmayneedtorefer thebabytoneonatalnurse,hospitalconsultant informed aboutpossibleside effects. Afterdischarge,ifyouareconcernedabout administer ittothebaby, givenfulldetails about whatthemedicationisforand Before discharge,ifthebabyisonmedication,familieswill be shownhowto aswellsupportfortheparents. degree ofco-ordinationbetweenservices put inplaceinvolvingtheneonatalunitoutreachteam.You willneedto ensurea shouldbeidentifiedandacareplan communityservices conditions. Thenecessary Some babiesmayhaveoneofawiderangelife-limiting or threatening may arise. into anycurrentconcernsofstafforparentsandpotential problemsthat units atanydischargeplanningmeeting.Thismeetingaffords youaclearerinsight You willhavevaluableinformationtoshareandshouldbewelcomedby neonatal side ofcaringforthebaby. is dischargedtheneonatalunitstaffwillalsodiscusswithparentspractical the neonatalunititislikelythattheywillcoordinatedischarge.Beforeababy with thelocalunit.Ifthereisacommunitynurseorfamilycareworkerattachedto where there from is unit one to available, unit, will so vary these should be checked Discharge proceduresandhandovertotheneonatalcommunityoutreachteam, Discharge planning – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – has medicalresponsibilityforthemanagementoftheseshouldbeidentified. problems withtheirsight,ormovementdifficulties.Plansforfollow-upandwho wheezy whentheyhaveacoldorvirusthataffectstheirchests.Othersmay For example,babieswhohavespentalongtimeonventilatoroftenbecome Some babiesmayhavemedicalproblemsthatcontinueformonthsoryears. Management oflongtermproblems may require additional preventative respiratory syncytialvirus(RSV)prophylaxis. may requireadditionalpreventativerespiratory orcardiacproblems they arestillinhospital.Babieswithcontinuingrespiratory baby’s pretermbirth.Somebabiesmaythereforestarttheprogrammewhile eight weeksafterbirth,asfortermbabies.Thatis,nocorrection ismade fora The immunisationprogrammeforbabiesbornpretermorsick usuallystartsat Immunisation complications relatedtotubefeeding. disadvantages includetheincreasedburdenforfamily and thepossibilityof costs, comparedwithwaitinguntilbabiesareonfullsucking feeds.Potential potential benefitofunitingfamiliessoonerandreducinghealthcare andfamily Early dischargeofstablepretermbabieswhostillrequiretubefeedshasthe doctor. for theparents.Afterdischarge,prescriptionscanbeobtainedfromfamily given bythehospital.Thepersoncoordinatingdischargewillorganisethis supplies andequipment.Somewillbefromthefamily’s doctorandsomewillbe If thebabyisgoinghomeonoxygen,prescriptionswillbeneededforoxygen education. the contextofanorganisedprogrammedischargeplanningandparent family, financial, andhomecommunityfactors.Thisisbestcarriedoutin careful planningtoensuresuccess,takingintoaccountanumberofpatient, Sending preterminfantshomewhiletheyarereceivingoxygentherapyrequires against exposuretovirusesfromillrelativesandfriendsathomemustbegiven. the home.Theriskofnosocomialinfectioniseliminated,althoughcounselling and parent-babyattachment,whichisbestachievedintheenvironmentof benefitisthepromotionofbaby’soxygen. Theprimary normal development accrue fromdischargingstableinfantswhiletheyarestillreceivingsupplemental Oxygen therapydoesnotrequireahospitalenvironment,andmajorbenefits Continuing medicalneeds 4

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Bliss 2011 • • • • • extra supportinclude: support, somefamiliesaremorevulnerablethanothers.Families whomayneed Although allfamilieswhohaveapretermbabywillneedcontinuing helpand Identification ofvulnerablebabiesandfamilies involved insupportingthemandthebabyoncetheygohome. dietitians. Beforedischargetheparentswillbegiveninformationonwho the baby’s caremayincludephysiotherapists, childdevelopmentspecialistsand whilst advisingonareassuchasfeeding.Otherhealthprofessionalsinvolvedin there forsupportwithcontinuingmedicalneeds,suchashomeoxygenassist, had ababyrecentlydischargedfromthehospital.Thisspecialistnursewillbe connected totheneonatalunitwhomakeshomevisitsfamilieshave Many hospitalsnowhaveacommunityneonatalnurseorfamilycaresister Support athome financial problems. households wherethereisintimate partnerabuseorsevere chaotic lifestyle parents whohavedrugoralcoholproblems,mentalhealth problems,a department parents whoseotherchildrenareknowntothesocialservices relatives andfriends young orsingleparentswithapoorsupportnetworksuchas lackofnearby accommodationorinpoormulti-occupiedhousing families intemporary – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – child dischargedintocareorplacedontheprotectionregister. In otherfamilies,childprotectionproceduresmayneedtobeinstigatedandthe and supportfromagenciessuchassocialworkers,orhousingbenefitadvice. before thechildisdischarged.Insomecases,familiesmayneedonlyextrahelp department, andtheholdingofacaseconferenceorprofessionals’meeting of suchinformationwiththeappropriatehospitalstaffandsocialservices Each areawillhaveitsownpoliciesbutthesewouldnormallyinvolvethesharing policies orchildprotectionproceduresshouldbefollowed. if childprotectionorotherconcernsareidentifiedoncetheisborn,local Where suchfamiliesarealreadyknowntocommunityhealthprofessionals,or • • • • • • • • ofkeyoutcomes: Summary advice andpsychologicalsupport. financial invaluable membersoftheteam,providingsignpostingservices, visibility oftheschemetobothparentsandstaff.Thesupport workersbecame based ontheunitoneafternoonaweektopromoteaccess andensurehigh to theChildren’s Centrelocaltothefamily. Adedicatedsupportworkerwas neonatal staffforallinfantsadmittedtotheunit(withfamily’s consent) An opt-outreferralsystemwasimplemented,withreferralsmadebythe based withineachchildren’s centre. they hadasufficientnumberofskilledsupportworkers,tohelpthefamilies staff madecontactwiththeWirralChildrenCentres’lead,whoagreedthat needed tobedoneimprovetherangeofsupportoptionsavailable.Unit a seriesoffollowupmeetingswithparentsmadeitclearthatsomething team. Theparentsreportedfeelingalone,unsupportedanddepressed, well) fromtheneonatalunit,andsubsequentlycommunity loneliness andisolationfourtosixmonthsaftertheirinfants’discharge(fit A numberoffamiliesfromArroweParkhadexpressedfeelingsloss, community professionalscanmakearealdifferencetoparents. betweenhospitaland outlineshowthecoordinationofservices This summary Cheshire &Merseyneonatalnetwork FaB (FamiliesandBabies)project, Case study only 1.6percentoffamiliesdeclined support. 100 percentfamilysatisfaction rate 11.8 percentweresignposted tootherservices 18.6 percentreceivedemotional support 30 percentreceivedbenefitadvice 15.2 percentreceiveddirectsupport 37.2 percentoffamiliesregisteredwiththeirlocalchildren’s centre 49.1 percentoffamiliescontactedsupportworkersontheunit

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Bliss 2011 neonatal unitstaffand/ortheparents: Before thebabyisdischargedyoumaywishtocheckfollowingwith Checklist beforedischarge

Information provision: Bathing andfeeding: Medicines: ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ Equipment: ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – booklet Have theparentsbeenofferedBliss Has thefamilyreceivedtheirbaby’s redbookandisitcompleted? Does themotherhaveaccesstospecialmilkformula,ifrequired? feeds, ifappropriate? Do theparentsknowhowtosterilisebottlesandmakeupbaby’s breast pump? If themotherwishestoexpressbreastmilk,doesshehaveaccessa Trust orotherbreastfeedingsupportorganisations? Has breastfeedinghelpbeensoughtfromthelocalNationalChildbirth Is breastfeeding,ifappropriate,fullyestablished? Do theparentsknowhowtobathetheirbaby? Are theparentsawareof ‘back tosleep’position? Do theparentshaveasuitable cotforthebabytosleepin? Is acorrectlyfittedcarseatavailableifthebabyisgoinghome bycar? may need? Have theparentsbeenshownhowtouseanyspecialistequipment they further immunisationsdue? Has thebaby’s immunisationprogrammecommenced?Whenare the babyneeds? Have theparentsbeenshownhowtodrawupandgiveany medication discharge? Are medicationsand/orequipmentorganisedandavailablefor syndrome andcotdeathprevention? Have theyhavebeengivenrelevantleafletsonsuddeninfantdeath Going Home: The Next Big Step Big Next The Home: Going (Blissfifthedition,2010)? Parent Pack Parent whichincludesthe

Follow upcare ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ problems? Who hasmedicalresponsibilityforthemanagementoflong-term problem? Who shouldyoucontactattheneonatalunitineventofa Who isgivingthefamilycontinuingsupportathome? the dateofthis? Have theparentsbeengivenafollow-upappointmentandwhatis

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Bliss 2011 Wiley &Sons,Ltd. 5. CollinsCT, MakridesM,McPheeAJ, 4. KotechaS,AllenJ, 3. NewK,FlenadyV, DaviesMW, 2. Naylor, ibid can we help? we can 1. NaylorH,GoingHome.Day/Bliss. References Archives of Disease in Childhood Fetal and Neonatal Edition Edition Neonatal and Fetal Childhood in Disease of Archives gavage feeding for stable preterm infants who have not established full oral feeds feeds oral full established not have who infants preterm stable for feeding gavage (Cochrane Review). In: The Cochrane Library, Cochrane The In: Review). (Cochrane open cot at lower versus higher body weight (Cochrane Review). In: The Cochrane Cochrane The In: Review). (Cochrane weight body higher versus lower at cot open Library, Library, – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Issue 2,2004.Chichester, UK:John Wiley&Sons,Ltd. [email protected] Oxygen therapy for infants with chronic lung disease. disease. lung chronic with infants for therapy Oxygen Transfer of preterm infants from incubator to to incubator from infants preterm of Transfer The stresses faced by parents of prems – how how – prems of parents by faced stresses The Early discharge with home support of of support home with discharge Early Issue2,2004.Chichester, UK:John 2002; 87:F11-F14 8 Helping the family at home

8. Helpingthefamilyathome the babyandthem. that frequentcuddleswillprovidereassuranceandasenseofstabilityforboth is usefultoremindparentsthattheyarethefamiliarfactorintheirbaby’s lifeand smells –anditcantakesometimeforbabiestosettleintoanewenvironment.It isnewanddifferent–colours,noises,temperature it isforthem.Everything Parents need to be aware that coming home is as big a change for their baby as Adjusting tolifeinthehomeenvironment which parentswillneedadvice. behavioural andemotionalproblemsminorlearningdisabilitiesabout babies haveahigherriskofslightdelaysinmotorandverbaldevelopment, disabilities,pretermandlowbirthweight In additiontocommonsensory-neural the neonatalperiodaschildgrowsandconfrontsnewhealthchallenges. and medication,theparents’uncertaintiesaboutfuturemaycontinueafter As wellasdealingwithanyfeedingdifficulties,specialnutritionalrequirements • • • around feeding. tocarefortheirbaby,necessary particularly ifthereareissues You canplay avitalroleinhelpingparentsgaintheskillsandconfidence stressful fortheparentsthanthatofatermbaby. The dailycareforapretermbabymaywellbemorechallengingand is essential. Continuing supportfromyouoncethefamilyhavetakentheirbabyhome

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Bliss 2011 problems, itmaybewisetoavoid placeswherethesemaybearisksuch dressed. However, whilethebabyisstillvulnerabletoinfection orhasrespiratory go outappropriatelydressed for theweather–asanyotherbabywouldbe extremely hotorcoldweather shouldbeavoided;otherwisethebaby avoiding infection,andnotbecoming isolatedathome.Exposingthebabyto Parents needtokeepahappy mediumbetweengoingoutwiththeirbaby, Going outandabout clinics. attend, youmaybeabletorearrangesomeoftheappointments withthevarious parents arehavingtroublemanagingthenumberofappointments theyhaveto time-consumingandtiringforparents,stressfulthebabytoo.If very than oneaweek.Travelling longdistances toandfromthehospitalcanprove coupleofmonthstomore fromoneevery The numberofappointmentscanvary Follow-up appointments maintained duringthedayaswithanybaby. being intheneonatalunitand,again,anormalhomeenvironmentcanbe The babywillalreadybeaccustomedtoanoisyandbrightenvironmentfrom Noise andlight used andthismaycauseconfusionwithparents. pharmacists mayalsobeproblematicasdifferentstrengthpreparations re-prescribe sothismayneedtobedoneatthehospital.Dispensingfromretail licensed foruseinbabiesand,thesecases,GPsmayinitiallybeunwillingto chemist canprovidetheseontimeandregularly. Somemedicationsarenot area, theywillneedtoplanorderingtheprescriptionsandensuringthat For example,somemedicationlastsjustsevendaysandiftheyliveinarural warning ofthenewmedicinesneededforbaby. the dosagerequired.Itisimportantthatparentsgivetheirfamilydoctoradvance follow-up appointmentsandmaychangethemedicinesbabyistaking Many babieswillgohomeonmedication.Thepaediatricianreviewthisatthe Medication layer ofclothingorablanketasnecessary. from hottocold,orviceversa,parentsshouldbeadvisedaddremovea from theneonatalunittemperatureof26°-28°C.Duringchangesinweather lowering roomtemperatureasthebabycannotcopewithanimmediatechange at homeisaround18°C(65°F).Abalancedapproachshouldbetakentowards babies, beingtoohotcanbedangerousandthebesttemperatureforbaby the roomtemperaturebeingmuchcoolerthanneonatalunit,but,aswithall sufficient bodytemperatureaswellanytermbaby. about Parentsmayworry By thetimebabyisdischarged,heorsheshouldbeabletomaintaina Temperature regulation – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – seat forthebaby’s size,whichis correctly fittedisessential. in activitieswithparentsoftermbabies.Iftravellingbycar, usingasuitablecar parents preferthattheirpretermbabiesaretreatedasnormalandwishtojoin neonatal unitwhichcanbeausefulsourceofemotionalsupport.Howeversome (RSV -seepage92).Somehospitalshavesupportgroupsconnectedtothe syncytialvirusseason especially fromOctobertoMarchduringtherespiratory as publictransport,childhealthclinicsandlargemotherbabygroups, can alsobeputintouchwithotherparentswhohavehadpreterm babies. appointments madeforimmunisationstobecompleted,if necessary. Parents for thebabytobeweighedathomefirstfewweeksorso,andseparate health clinicseitherjustbeforetheyopenorafterareofficiallyclosed, this. Ifappropriate,arrangementsshouldbemadeforparentstoattendchild babies –theymaybesubjectedtothoughtlessremarksbyotherparentsabout Some parentsaresensitiveaboutthesizeoftheirbabycomparedtoterm Parent support local authorityifrequired. Parents shouldbemadeawareofthisandassistedwithanapplicationtotheir medical needsrequirethetransportofbulkyessentialequipment. permit (bluebadgescheme)toparentsofchildrenundertwoyearsoldwhose There aremovestowardsextendingtheavailabilityofdisabledparking Car parking useful websitewithmoreinformationoncarsafety. special straps.TheRoyalSocietyforthePreventionofAccidents(ROSPA) hasa (notamosesbasket)withthecoveron.Itmustbeproperlysecured carrycot for ababytotravelisinproperlysecuredbackwardfacingseator There arelawsconcerningappropriatechildseats.Theonlylegalandsafeway Child seats

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Bliss 2011 028 9081505ortheBlissFamilySupportHelpline,onfreephone0500618140. andparentsupportgroups.ContactTinyLifebreast pumploanservice on babymassage, sick babyincluding:hospitalandhome–basedsupportservice, Ireland, TinyLife forfamilieswithapretermor providesarangeofsupportservices experiences aswellmanybranchesupanddownthecountry. InNorthern Bliss hasanetworkofparentswhoprovidesupportforotherwithsimilar activity andtheabilitytodirect andsustainattentiontofeeding. feeding requiresamaturearousal system,theenergyrequiredtoperform and theyalsoincreasethestrength oftheirsucking.To maintainengagement in babies mature,theysuckforlonger bursts,withlesstimebetweenthese baby mustcoordinatesucking,breathingandswallowingthroughout afeed.As tocarefortheirbabiesathome. confidence necessary To feedsuccessfully, the importantforyoutohelpparentsgaintheskillsand skilled atfeeding.Itisvery Some pretermbabiesaredischargedfromtheneonatalunit beforebecomingfully Feeding andfeedingissues playingsoftmusicorleavinganightlighton. try they canpositionthemosesbasketorcotnexttotheirbed. Theymayalsowantto stroking himorhertoreassurethebabythattheyarethere. Thiswillbeeasierif stillholdingor may wellbesleeping.Ifthebabyisunsettled,parentsshould try noisier insleepthantermbabies,andalthoughthebabyis movingatnight,they Parents shouldalsobeadvisedthatpretermbabiesmay moreactiveand let theirbabysleeponthesofaoracushion. because oftheincreasedrisksuddeninfantdeath,andthattheyshouldnever co-sleeping isnotrecommendedforbabiesbornbefore37weeksgestation (although thisisonlyrecommendedtillsixmonths)theyshouldbeadvisedthat to sleep.Althoughitishelpfulhavethebabysleepingintheirparents’room may wanttobeparticularlyclosethemandwishtakeintotheirbed Parents whohavebeenseparatedfromtheirbabiesforsomeweeksormonths Recommend thatthebabysleepsincot alternative sleepingpositionsmayberequired. difficultiesassociatedwithcongenitalabnormalities,other any airway/respiratory left lateralwherethereissignificantgastro-oesophagealreflux;and,ifare positions forsleep,example,raisingthebedtoa30degreeangleandsleeping at home.However, inafewcases theremaybemedicalindicationsfordifferent ‘back tosleep’positionisthesafestsleepingfortheirbabynowtheyare in theneonatalunit,parentsmayneedparticularreassurancefromyouthat sudden infantdeath.Asbabiesaresometimesplacedontheirfrontorsidewhile their backtosleep,withfeetatthebottomofcotreducerisk The governmentadvisesthatbabies(includingthosebornpreterm)shouldlieon Sleep – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – is fallingasleep,feedingshouldceaseandthebabyallowed torest. stimulate suckingifbottlefeeding,asthiscancausefeeding distress.Iftheinfant to interruptpausesforbreathingandresistthetemptation tojiggletheteat before thebabybecomesdistressed.Parentsshouldbetaught thatitiscriticalnot eyebrow, blinkinganddrooling. Theycanthenprovideabreakinfeedingearly– disengagement, suchaslongpausesintakingabreath,slower sucking,araised feeding bybeingtaughttospotthesubtlesignsofimmature co-ordinationand baby’s mouth.Parentscanhelpsupportababy’s co-ordinationwithbottle to thebaby’s sucking,milkflowsfromabottleassoonitistippedupinthe diminish. Unliketheflowofmilkfromabreast,whichisstimulated inresponse feeding. Inaddition,asbabiesbecometiredduringfeeding,theircoordinationcan breathing maystillhaveoxygendesaturation,fatigueandearlycessationof Babies whostillhaveimmatureco-ordinationofsucking, Bottle feeding dietitians whowilladvisewhentochangestandardmilkformula. will usuallyhavefollow-upappointmentswithneonatologists,paediatriciansor to re-ordertheirprescriptionsappropriately. Babiesrequiringspecialisedmilks pharmacies willkeeptheseformulasinstock,itisimportanttoencourageparents to takehome.Theyareavailableonprescriptioninthecommunity. Asnotalllocal will becommencedontheneonatalunitandbabyprovidedwithsome neonatal unitsnowuseformulamilksspecialisedforpretermbabies.Thesefeeds When breastmilkisunavailable,ortotreatspecificdigestiveproblems,many Milk formulas from thebreastaftereachfeedtomaintainmilksupply. attach tothebreastwithstrongersuction.Ifusingashielditisimportantexpress to fullbreastfeedingwhenhome.Sometimesanippleshieldcanhelpbaby before beingabletosucklewellatthebreast,heorshemayneedhelpadapting gets stronger. Ifthebabyhasreceived breastmilkfromabottleandisdischarged can makesureshecontinuestomaximiseherbreastmilksupplyasthebaby weaker sucksandnotfullydrainthebreastateachfeed.Byexpressingamother until thebabyreachestermgestationalage.Pretermbabiesmaystillhaveslightly it isimportantthatamothercontinuestofullyemptythebreastaftereachfeed they maybestrongenoughtoreceivealltheirnutritiondirectlyfromthebreastbut With support, many babies now leave the neonatal unit fully breastfed. Once home Breastfeeding Feeding more easily. enables themtocontroltheflow ofmilkandco-ordinateswallowingbreathing would ifbreastfed,theymayalsofeedbetterfedwithaslower flowteatthat preterm babiesmayfeedbetteriffedinanelevatedsidelying positionasthey 3

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Bliss 2011 feed wellusingthembeforethebabygoeshome. appropriate fortheirbaby, andtheyshouldalsoensurethatthebabyisableto unit staffusuallydiscusswiththeparentswhichtypeofbottleandteatwillbemost There isawiderangeofbottlesandteatsavailableonthemarket.Theneonatal Bottles andteats shows nosignoforalthrush. the areolaandnipples.Bothmotherbabyshouldbetreatedevenif the mothercomplainsofshootingpainsinherbreastorrednesssoreness in particular, isoftenacauseofbreastfeeding failureandshouldbesuspectedif problems mayincludemastitisandnipplethrush.Candidiasisinfection(thrush), unit. Apartfromproblemswithpositioningandattaching,otherbreastfeeding breastfeeding problemsaftertheirbabyhasbeendischargedfromtheneonatal As withanymotherbreastfeedingtheirbaby, somemothersmayexperience the babyabitmoreofherownmilkfrombottle. so thatifthebabyisnotyettakingenoughfrombreast,mothercanfeed needs tobemonitored.Expressingandstorageofbreastmilkshouldcontinued lactation andaremakingthetransitiontofullybreastfeeding.Ababy’s growth medical staffmayneedtooffersupportmotherswhohavesuccessfullyinitiated been expressingforaprolongedperiod.Communityhealthprofessionalsorother and babyhavebeenseparatedforextendedperiodsoftimeamotherhas Continuing tomaintainasufficientmilksupplycanbedifficultwhenmother Feeding issues – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – we’ve allachieved.” looking back,butalwaystorememberhowfarwe’vecome andhowmuch Their firstbirthdaywasaturningpointforme,tolookthe futureandstop could havehopedfor. my girlsearly. Two ofuswentinandfourcame out.ThebestoutcomeI precious earlyweeksIfelthadmissedouton.nowrealise thatIgottomeet It hastakenmeayeartocometermswithAmelie’s conditionandthose health visitorsandGPvisitsallgivingconflictingadvice. and feltoverwhelmedbythenumberofhospitalappointments,therapists, I foundbringinghomeachildwithongoingspecialfeedingneedsterrifying focused onwhenyouwillbeabletobringyourbabyhome. she shouldhavebeenborn.Whenyouachildintheunitarevery eventually Iwasabletotakeherhome,54daysafterbirthandonedaybefore had causedherthroattonarrow. SCBUtaughtmetotubefeedAmelieand struggling tofeedandnursesdiscoveredthatscartissuefromtheoperation unit thedecisionwasmadetotakeIsabelhome.Amelie,howeverstill She wastransferredbacktobebyhertwinsister’s side.After38days inthe finally acallcamefromthehospitaltosayshewasbreathingonherown. This wasthelowestpointformeandfeltlikeamajorbackwardsstep,but be ventilatedforfivedays. operation, Amelieneededto surgery. Exhaustedfromthe to anotherunitforlife-saving Amelie hadtobetransferred taken tointensivecareand babies wereimmediately by caesareansection.Both delivered eightweeksearly Hope andIsabelFaithwere “Our twingirlsAmelie Anna’s story

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Bliss 2011 • • • • • preterm babies: There areanumberofcommonproblemstotakeintoaccountwith Common feedingproblems Possibly forthisreason(and others),theydonotappeartobeatincreasedrisk Because ofthis,theirgutfunction maturesmorerapidlythanthatofatermbaby. first givenenteralfeeds,which canbeasearly14weeksbeforetheirduedate. The gastrointestinalsystemof prematurebabiesdevelopsfromthetimetheyare Weaning ontosolidfood discomfort andalackofappetitethatwillaffecthowwellthey feed. If ababygetsconstipatedanddoesnotpassstoolsregularly itcancause Constipation decided uponbythehospitalteambeforedischarge. ironsupplementationwillbe relatively lowironstoresatbirth.Anynecessary Preterm babieshavehigherironrequirementsduetotheir rapid growthand Iron deficiency nutritional needsvary. after hospitaldischarge.Clearcutrecommendationsaredifficult becausebabies’ Studies suggestthat‘normal’pretermbabiesbenefitfromnutritionalintervention Nutritional interventions small amounts,thisisevenmorethecasewithoxygen-dependentbabies. co-ordination. Whileitiscommonforallbabiesthatwerebornpretermtotake effortcausingmoreproblemswith smaller volumesduetoincreasedrespiratory to feedingdifficulties.Theyarefrequentlyslowerandmoredifficultfeed,taking additional workofbreathing,butfindtakinginsufficientcaloriesmoredifficultdue Oxygen-dependent babiestendtohaveahighercalorierequirementduethe Feeding oxygen-dependentbabies and shouldbemedicallyreviewed. oesophageal reflux.Projectilevomitingmayindicateamoresignificantproblem describe larger, morefrequentlosses andmayindicatethepresenceofgastro- the returnofswallowedairor‘wind’,andisunimportant.Regurgitationusedto in degree.Possettingdescribesthesmallamountsofmilk,whichoftenaccompany Both thesetermsmaybeusedtodescribethenon-forcefulreturnofmilk,butdiffer Possetting /regurgitation decided uponbythehospitalteambeforedischarge. Constipation. Iron deficiency The issueofnutritionalinterventions Feeding whileoxygendependent Possetting /regurgitation – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 4 Anyrequiredsupplements,suchasvitamindrops,willbe alert state. to dothisiftheyareinthequiet just afterbathingcanbeagood time can benefitbothbabiesand parents; using appropriatenaturalorganic oils, fragile and/ordry. Babymassage, especially asthebaby’s skinmaybe babies, dailybathingisnotnecessary, temperature. Aswithotheryoung bathed shouldbeatawarm,stable slip mat.Theroomwherethebabyis easiest touseababybathwith the neonatalunit.Theymayfindit to baththeirbabybeforeleaving Parents willnormallybetaughthow Bathing preterm babieswasofbenefitfordevelopmentaloutcomes, massage in2000concludedthattherewasnostrongevidencefor western parentswithtermbabies.Althoughacriticalreviewoftheliteratureon popularwith of years,andinrecentyearsbabymassagehasbecomevery Many cultureshaveusedmassageaspartofcaringfortheirbabieshundreds Touch andmassage to weanbetween5and8months(actual,notcorrectedage). problems withacceptingagoodvarietyoffoods),hasledtorecommendations with theneedtoensurethatweaningdoesnotoccurtoolate(whichmightcreate of gastrointestinalproblemsorallergyassociatedwithweaning.This,combined Bliss FamilySupportformoreinformation. afford topay. Alternatively, communityhealthprofessionalsorparentscancontact Centres) areasandprivateclassesmayalsobeavailableforparentswhocan Massage groupsareoftenheldinhealthcentresorSureStart(Children’s • • • • • The potentialbenefitsofmassageinclude: facilitate parent/babyinteractionandattachment. have beenseparatedfromtheirbabiesforweeksormonths,babymassagemay expressed satisfactionwhentaughtmassagefortheirbabies.Forthosewhomay be helpedtolookforappropriatecues. babies shouldstarttoshowreadinesscuesforintroducingsolidfoods;parentscan your preterm baby preterm your helping torelievethebaby’s colic, windandconstipation. promoting bettersleepinthebaby helping boostandbuildself-confidenceinbabyparents relaxing babyandparents helping theparentslearnabouttheirbaby’s needs (Blisssixthedition,2010)helpful.

Bliss 2011– 6 Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss Parentswillfindthepublication 7 manyparentshave 5 Aroundthistime Weaning Weaning

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Bliss 2011 24-hour medicalcare,especiallywhentheirbabyisill. addition tobackupfortheequipment,itisessentialthatfamilieshaveaccess fortheparentsandcarers.In will providetraininganda24-hourbackupservice andthelocalcompany oxygen companiescoveringdifferentregionsofthecountry prescription orHomeOxygenOrderForm(HOOF)theyreceive.Thereareseveral oxygen companywillsupplythefamilywithmostsuitableequipmentto Oxygen issuppliedincylinders(whichcontaingasorliquid)concentrators.The Using oxygenathome steel ones. and thenewercylindersmadeofaluminiumaremuchlighterthantraditional essential sothatthefamilycantakebabyoutofhomefromtimetotime, room areaandanotherinthebaby’s bedroom.Portableoxygencylindersare returned totheroom.Usually, twooutletsaresufficient:oneinthemainliving through theoxygentubesandnasalcannulatobaby. Therestoftheairis before use.Thisisdeliveredthroughtheoxygentubetoaflowmeterandthen (including bacteria)andnitrogen.Theresultantoxygenisstoredinareservoir work bytakingroomairthroughaseriesoffilterstoremoveparticulatematter electrical costsviathesupplier. backup incaseofmechanicalfailure.Arrangementsaremadetorefundthe – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 9 Ifparentshaveaconcentrator, they willalsoneedacylinderas 8 Oxygenconcentrators edition, 2010). the UKorabroadpleaseseeBlissbooklet, the outing.Formoreinformationontravellingoutsideof family’s localarea,in oxygen inthecylinderbeforetheyleavehousetoensure theyhaveenoughfor prevent damagetoanyoftheconnections.Remindparents tocheckthelevelof thecylinderinarucksack,ensuringthatitiswrappedsecurelytowelto carry handles, astheweightofcylinderwillpullitover. Asanalternative,parentscan tray orbasketunderneath.Portableoxygencylinderscannot behungoverpram family canleavethehouseandleadamoreactivelife.The pramwillneedasturdy oxygen cylindersfortheparents.Havingportable willmeanthatthe who iscoordinatingthedischargeofbabycanarrange toprovideportable Life canbequiteisolatingifthebabyisonhomeoxygenandithelpsperson Leaving thehousewithababyonoxygen ✔ ✔ ✔ ✔ It isessentialthat: stock upsothattheywillnotrunoutoveraweekendorbankholiday. for thecylinderstobedeliveredhome.Itisalsoagoodideaparents this willneedreplacingsosparepartsshouldbeavailable.Allcompaniesarrange the tubesandnasalcannulatobaby. Ifthenasalcannulabecomesblocked, regularly throughoutthedaytoensurethatthereisafreeflowofoxygenthrough to managetheoxygentubesandnasalcannulatheyneedcheckthese the oxygenequipment.Theneonatalunitnurseswillhaveshownparentshow The oxygencompanywilladviseparentsaboutthesafestwaytostoreandclean Storage, cleaninganddelivery ✔ ✔ ✔ ✔ confirming thattheyhavenotedthisinformationonthepolicy. claims iftheyhavenotmentionedthis.Itisusefultosomethinginwriting andstoringoxygeninthehousecarasitmayaffectfuture carrying The householdandcarinsureraretoldinwritingthattheparentswillbe house. advise thepropertyownerorcouncilthattheywillbehavingoxygenin If livinginrentedaccommodationorlocalauthorityhousing,parentsshould home fireriskcheckandwillalsoinstallafreesmokealarm. offerafree as aprecautionintheeventoffire.Mostfireandrescueservices The firebrigadeisalsotobenotifiedofthepresenceoxygeninhome car. andstoringoxygeninthehouse advised inwritingthattheyarecarrying The parents’gasandelectricitysuppliershouseholdcarinsurersare

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss Going home on oxygen oxygen on home Going (Bliss fourth

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Bliss 2011 somatic growthandsometimes,theweather. hypertension), including associatedmedicalproblems(forexample,pulmonary oxygen supplementation.Weaning islikelytobeinfluencedbyotherfactors, supplemental oxygen,usingtargetsaturationvaluessimilartothoseusedduring isusedtodeterminewhenitappropriateweaninfantsfrom pulse oximetry depend onthebaby’s individualprogress andneeds.Mostcommonly, prolonged longer thanayear. Thiswill be thatoxygenisneededfor just afewmonthsoritmay the babyneedsoxygenfor than necessary. Itmaybethat is notonoxygenforlonger baby’s progresssoheorshe paediatrician willmonitorthe methods arepreferable.The evidence thatgradualorabrupt home oxygen.Thereisno used inweaninginfantsfrom No uniformstandardsare Weaning fromhomeoxygen higher riskforhavingsymptomatic GORD. Those infantswithChronicLung Diseaseorneurologicallyimpairedchildrenareat and poorweightgainorloss.ThisisknownasGOR Disease(GORD). problem whenitcausessymptomsofdiscomfort,irritability, significant vomiting a particularproblembecausetheyhaveweakermuscletone. GORbecomesa but causeseffortlessratherthanprojectilevomiting.Preterm babiesmayhave bigger andstronger. GORisthemostcommoncauseofvomitinginallbabies, weak; andiscommoninmanybabieswhograduallygrow outofitastheyget occurs whenthesphinctermusclebetweenoesophagus andthestomachis of thegastriccontentsbackintooesophagusand,attimes, intothemouth.It passage Gastro-oesophageal reflux(GOR)describestheeffortless or involuntary Gastro-oesophageal reflux(GOR) to discharge. orpermanentstoma.Specialistsupportwillhavebeenarrangedprior temporary mayhavea health professionals.Somebabieswhohaverequiredbowelsurgery decision toadoptthistreatmentistakenafterconsultationwiththeappropriate Babies whoexperiencepersistentfeedingproblemsmayneedagastrostomy. The Gastrostomy andstoma – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – inhibitors maybeused. babies. IncasesofsevereGORoroesophagitis,H2antagonists orprotonpump Prescription-only productsmaybeaddedtoformulaorwater forbreastfed Medication may berecommended. older, overfeedingshouldbeavoided andsmallerfeedsofincreasedfrequency decrease regurgitationandvomitingasadvisedbyadoctor. Asthebabygets Thickening agentsmaybeaddedtoinfantformulaincreasefeedviscosityand Feeding help reducereflux. abdominal pressureandworsensreflux.Aleftlateralpositionmaybeindicatedto tends toassumeaslumpedposition,shouldbeavoided,asthisincreasesintra- degree anglebyproppingupthebedhead.Seatedpositions,wherebaby kept asuprightpossibleafterfeedingbybeingheldorata30 recommended becauseoftherisksuddeninfantdeath.Thebabyshouldbe Although studieshavefoundthepronepositionreducesGOR,thisisnot parents totreatGORonlyafterassessmentandadvicefromamedicalteam. Positioning techniques,feedingroutinesandmedicationsshouldbeusedby Positioning Management ofGOR may occurintheabsenceofemesis. aspiration ofgastriccontents.NotallbabieswithGORvomit,andsignificant problemscausedbyrepeatedpulmonary andavarietyofupperrespiratory crying, desaturation, bradycardia,stridor, oesophagitiswithirritabilityandexcessive babies. Theseincludefailuretothriveasresultofcaloricdeprivation,apnoea, GOR isamulti-factorialdisorderthatmaycausemanyclinicalproblemsinpreterm Complications ofGOR

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss

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Bliss 2011 80 percentofthesebronchiolitisinfectionsareattributabletoRSV. infectionsuchasbronchiolitisorpneumonia.Approximately following arespiratory However, pretermbabiescanbeathigherriskofbecomingmoreseriouslyill ofallagesthroughouttheyear.Coughs, coldandstuffynosesaffecteveryone Respiratory SyncytialVirus(RSV) to protecttheirbabies,especiallyduringthewinterseason(OctoberMarch). As healthvisitors,youarebestplacedtoadviseparentsaboutRSVandtheneed What tolookoutfor • • • • RSV –quickfacts • • • • • Parents can help to lessen the chance of their baby becoming infected with RSV by: at riskofdevelopingcomplicationsfromanRSVinfection. important torememberthattheirlungsarestillunder-developed andtheymaybe appear healthyandfinetomostpeople–includinghealthcareprofessionalsitis late pretermbabies(thosebornwithin33-35weeksgestationalage)usually RSV istheleadingcauseofviraldeathininfantsyoungerthanoneyear winter.RSV epidemicsarepredictableastheyoccurevery with RSV. year Around 20,000infantsintheUKareadmittedtohospitalevery breathing difficultiesifthelungsbecomeinfected. commonviruswhichcausescold-likesymptoms,butcanleadto RSV isavery can beparticularlyseriousinpretermbabies. keeping thebabyawayfromtobaccosmoke. or cuddlingtheirbaby discouraging otheradultsandchildrenwithcold-likesymptoms fromhandling cleaning toys,highchairsandworktopsregularly reducing theirbaby’s exposureto crowdsandpublictransport hands to washanddry ensuring thatallpeoplewhocomeintocontactwiththeirbabytakeextracare – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 12 10 11 12 10 Although 13 and 14

frequently andthoroughly, especiallyifthey haveacold. inthehouseholdshouldwash theirhands children andadultssoeveryone be caughtthroughdirectcontact withnasalsecretionsonthehandsofinfected next threetofiveyears.Some maydevelopasthma.Theinfectionisthoughtto but asmanyhalfwillhaverecurrentepisodesofcoughand wheezeoverthe the acuteillness.Mostinfantsrecoverfrominfection withintwoweeks, gets betterandthechildwillcontinuetocoughformanydays, evenweeksafter been showntotreattheinfectioneffectively. Bronchiolitisgetsworsebefore it is aviralinfection,nomedicines–suchasantibioticsorbronchodilators –have nasogastric tube or intravenous fluids if there is difficulty with feeds. As bronchiolitis Oxygen maybegiventothebabyifnecessary. Feedingmaybegivenvia distress occurinseverecases,whichcasethechildwillbe admittedtohospital. all thesecases,hospitalisationshouldbeseriouslyconsidered. Signsofrespiratory youngpatientsmayhavesignificantmorbidityandmortality.disease andvery In such aschildrenbornpreterm,withunderlyingcardiac orpulmonary to fivemonths.Mildcasescanbenursedathome,butcertain high-riskpatients, between twoandfivemonths.Itusuallyoccursinwinterepidemicslasting can alsoproducethecondition.Thepeakageincidenceforbronchiolitisis although otherviruses,suchastheadenovirus,influenzaandrhinoviruses, syncytialvirus– 80 percentofcases,bronchiolitisiscausedbytherespiratory infancy, with 90 percentofaffectedchildrenagedonetoninemonths.Inabout diseaseof in thefirsttwoyearsoflife.Itismostcommonseriousrespiratory illnessofchildrenthatcanoccur respiratory Bronchiolitis isanacuteinflammatory Bronchiolitis nurse. SeetheBlissbooklet, to thenearestRSVclinic,wheretheycanaccessfollow-upcarewithapaediatric from RSV, youcancontactyourlocalhospitalorcommunitynursetoreferthem If youidentifyapretermorvulnerablebabywhomaybeatriskofcomplications RSV clinics • • • • • complications fromRSVinfectionthanatermbaby. immature immunesystemandcanthereforebemoresusceptibletoserious If ababyisbornatlessthan35weeksgestationalagehe/shewillhavean Risk factors include: one ofanumberriskfactorsforsevereRSVinfection–othertoconsider smoking inthehome. birth precedingorduringtheearlypartofRSVseason(October–March) male gender pre-school agedsiblingsinthefamily low birthweight 16,17 Common winter illness illness winter Common

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 15 (second edition,2010). However, prematurityisonly

93 Helping the family at home 8 94 8 Helping the family at home

Bliss 2011 edition, 2010)containsusefulinformationforparentsonwhentocalladoctor. and willremainsmallthroughoutinfancychildhood, have difficultyinbreathing.TheBlissbooklet, wheezing.Inseverecasesthechildmaybecomecyanosedand and expiratory followed byamoreseverecough,theonsetofrapidbreathing,chestretractions household mayhaveacoldusuallybydaythreeorfour).Thesesymptomsare cough andsometimesamildfever, forthreetofourdays(othermembersofthe Usually thebabyfirstdevelopssymptomsofacold,suchasrunnynose, Symptoms ofbronchiolitis discharge. stay, withpreterm babiesweighingsignificantlylessthanexpectedathospital Postnatal growthrestrictionappearstobeinevitableduringtheinitialhospital Growth issues monitor isnecessary. this withtheneonatalunitstaffwhowilladviseastowhetherornotanapnoea to loanmonitors.Parentswhoareworriedaboutapnoeicattacksshoulddiscuss particularly iftheirbabyhasrepeatedapnoeicattacks.Somehospitalsareable increase theanxietyofparents.However, someparentsprefertohaveone, Research hasshownthatmonitorsdonotpreventsuddeninfantdeathandmay Apnoea monitor problems relatedtoinadequate intakeoffoodorhighmetabolicrate. intrauterine growthrestriction, earlypostnatalgrowthrestrictionandfeeding such astheincreasedworkrequired tobreathe,earlyuseofcorticosteroids, Different explanations for the slow growth in infants with BPD have been proposed, do not.Theimpairedgrowthsometimesextendsoverthefirst fewyearsoflife. growth duringearlyinfancycomparedwithtermandpreterm infantsbabieswho dysplasia(BPD)showimpaired Preterm babieswhodevelopbronchopulmonary health professionals. to anysignificantgrowthproblemsthatmayneedaddressing bytheappropriate balance betweenreassuringparentsthattheirinfantisdoing wellandbeingalert for manyparentsofpretermbabies.You willthereforeneedtostrikethe right It isimportanttorememberthatperceivedpoorgrowtha majorareaofconcern term health. evidence thatavoidingrapidcatchupgrowthmaybebeneficial intermsoflong blood pressureandlowerriskfactorsforheartdisease.Inadditionthereissome babies givenbreastmilkhadlongtermhealthadvantagessuchasloweraverage The idealrateofgrowthisunclear. Randomisedcontrolledtrialshaveshownthat will eventuallyfallwithintheexpectedrangefortheiragegroup. – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 18 Whilesomebabieswilldisplaylittlecatch-upgrowthafterdischarge Common winter illnesses illnesses winter Common 19 otherswillcatchupand (second

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss

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Bliss 2011 19. Cooke,( 83:F215-F218) extremely low birthweight infants. Archives of Disease in Childhood Fetal and and Fetal Childhood in Disease of Archives infants. birthweight low extremely 4. CookeRJ,EmbletonND, September 2003 18. Cooke,( 10. Black,CP. 7. VickersA,OhlssonLacyJBetal, http://www.bapm.org/nutrition/guidelines.php 16. LawBJetal. 15. HornSDetal.JPediatr, 2003;143:S133-S141 Neonatal Edition Edition Neonatal 13. BonnetDetal. 11. Bliss2009– 17. Figueras-Aloyetal. 5. King2009CL 8,9. KotechaS,AllenJ, 6. 14. GoddardNL,CookeMC, 2,3. ThoyreS, development of preterm &/or low birth-weight infants. Cochrane Database of of Database Cochrane infants. birth-weight low &/or preterm of development 12. HandforthJetal. 1. Tommiska V, ÖstbergM,FellmanV, References Archives of Disease in Childhood Fetal and Neonatal Edition Neonatal and Fetal Childhood in Disease of Archives Edition Neonatal and Fetal Childhood in Paediatrics and childhealth and Paediatrics Nursing. of Journal American care. proper regarding fears Systematic Reviews Reviews Systematic Consensus statement on weaning preterm infants preterm weaning on statement Consensus – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Archives of Disease in Childhood Fetal and Neonatal and Fetal Childhood in Disease Edition of Neonatal Archives and Fetal Childhood in Disease of Archives Respiratory Care, Respiratory Techniques for Feeding Preterm Infants: Education calms parents’ parents’ calms Education Infants: Preterm Feeding for Techniques Common winter illnesses winter Common Pediatr Infect Dis Dis Infect Pediatr 2002; 86(3)F161-F164 Cardiol Young Young Cardiol 2000; 2:CD000390 Paediatr Respir Rev Respir Paediatr An evidence based guide to weaning preterm infants. infants. preterm weaning to guide based evidence An Pediatric Infectious Disease Infectious Pediatric Oxygen therapy for infants with chronic lung disease. disease. lung chronic with infants for therapy Oxygen 2009;19:9;405-414 Gupta RK et al. Epidemiol Infection Epidemiol al. et RK Gupta Feeding issues in preterm infants. Archives of Disease Disease of Archives infants. preterm in issues Feeding 2003;48(3):209-233 2005;15(3):256-265 J 2004;23:806-814 Parental stress in families of 2-year old old 2-year of families in stress Parental Massage for promoting growth & & growth promoting for Massage 2000,83:F215-F218 , 2000;1:210-214 , 2004;23:815-820 2011 103(9): 69,71,73, 2002;87:F11-F14 , 2007;135:159-162 ) 2000, 9 Encouraging healthy family relationships

9. Encouraging healthy family relationships 9

• Mothers of babies born preterm or sick are at a higher risk of postnatal depression than mothers of term babies. • Maternal depression has been identified as the strongest predictor of paternal depression during the period immediately after the baby’s birth; symptoms for men usually start later after the birth than for women and can persist for up to a year.8 • It is therefore vital that you interact with fathers and acknowledge the father’s role in the family in order to enhance and contribute to the health and well-being of the child.

Jason’s story Jason is the father of Charlie, born at 29 weeks weighing 3lb 7oz. “One of the most difficult things I had to do was tell my daughter Jessica that her mum was staying in hospital, and I did not know when she was coming home. The Encouraging healthy family relationships injustice of parents having to travel for hours to see their child is, in my view, inhumane. While I was in the unit I spoke with another dad who travelled two hours each way to see his daughter every night. Being a mechanic, he had to attend work to earn money so he came every night after finishing at the garage and then drove home again.”

New challenges Parenting is challenging, even under ideal circumstances. The quality of parenting and the home environment are crucial factors in any child’s health and development. These factors are even more important in the outcome of the preterm or sick baby, but studies have shown that parental anxiety and stress levels are higher and depression is not uncommon in these households.1

The birth of a preterm or sick baby represents a well-documented emotional crisis for the parents and the family. Even when the baby is home, parents may need help in coming to terms with what has happened and parents of preterm babies with or without disabilities may question their reactions.2

They may feel that they should be grateful that their baby is alive and at home, but instead still feel anger or grief at what has happened. Parents of preterm babies react differently to stressful events such as illness, surgery, behaviour problems and perceived developmental difficulties. These events may resurrect the feelings

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 99 9 of helplessness, frustration and fears for the future of their child that they felt while the baby was in the neonatal unit. These recurring reactions are defined as ‘chronic sorrow.’3 You will need to acknowledge that this is an emotional and difficult time for the parents and may need to give them ‘permission’ to express these feelings as normal, without feeling guilty about them. Contact with other parents of preterm babies who share the same difficulties, and, if necessary, some professional counselling may benefit and help support the parents. You can relieve stresses upon both parents by communicating with the neonatal unit, answering questions, interfacing with the GP and social services if necessary, assisting with hospital appointments and offering emotional support. The parents’ relationship As discussed in Chapter 4, Understanding the parents’ perspectives, several studies confirm that the birth of a preterm baby is considered to be a crisis for both parents. The way in which each parent copes with this experience will be different, and no one way is ‘normal’ or ‘right’. The stress, fatigue and fear that are likely to accompany having a baby who needs hospital care may, in itself, place significant and considerable strain upon a relationship. The stress of caring for and adjusting to any new baby may also cause or intensify discord between parents. Encouraging healthy family relationships When a preterm baby goes home it is likely that the father will have returned to work. He may be unable to spend more than a few days at home, especially if he has had to take time off while the baby was in hospital. In most families with a new baby, it is likely that the mother will be the main caregiver, and in families with preterm or sick babies, the overall stress of mothers has been found to be higher than that of fathers. Sexual problems may occur in both mother and father following the traumas of the birth and these may cause additional discord within the parental relationship. Although the birth of a preterm or sick baby is a stressful event for parents, and anxiety and stress levels are higher than in parents whose babies do not require hospitalisation, it has been found that most parents seem to have recovered well by the time the child has reached the age of two.4

100 Bliss 2011 – Bliss Community Health Professionals’ Information Guide The father’s role in the family 9 Cultural expectations of fathers, and their participation in the care of children, have evolved over the past 20 years. Research has demonstrated that fathers have assumed more child care responsibilities and that the number of hours spent with children are converging for men and women. Research has confirmed that fathers make different, but equally important, contributions to a child’s growth and development with respect to emotional health and cognitive development.5 However, fathers sometimes feel ignored or marginalised, and their contributions unacknowledged. This may either discourage fathers, who may already be unsure about their new role, from becoming more involved, or alienate fathers who have strong feelings about being involved, leading to feelings of exclusion.6 It is therefore vital that you interact with fathers and acknowledge the father’s role in the family in order to enhance their contribution to the health and well-being of their child. Encouraging healthy family relationships Siblings These times can be very difficult for older brothers and sisters. They may know that their parents are struggling but they may not be old enough to understand the situation and its implications. Reassurance is essential and, as with term babies, appropriate involvement with the new baby is extremely important. Parental stress and the high levels of care required for a baby with continuing medical complications bring challenges to family relationships and these inevitably impact on siblings.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 101 9 The next pregnancy The risk factors for preterm labour and low birthweight babies are discussed in Chapter 1, Preterm and sick newborn babies: the overview. Depending on the cause of the preterm birth, parents may benefit from advice on how to prevent a subsequent preterm birth. For example, if smoking was a factor, advice on smoking cessation should be made available. If other factors such as cervical incompetence or pre-eclampsia/ hypertension are involved, antenatal staff will normally closely monitor any subsequent pregnancy and appropriate treatment and advice will be offered. Encouraging healthy family relationships

Mothers returning to work The arrival of a preterm or sick baby inevitably has a big impact on any previously laid plans for a mother to return to work. The birth may have meant a sudden departure from the workplace and, depending on the situation, possible short term medical complications for the mother too. With many families dependent on two salaries, and other families consisting of single parents, the pressure on the mother to return to work can be intense. Many parents express worries about putting their child in the care of others when their baby has had such a frightening and fragile start to life. This may be coupled with concerns about continuing medical complications, developmental issues or simply a sense that their baby is exceedingly vulnerable. The actual return to work can be difficult too, particularly if the original departure was sudden. As well as the obvious concerns about their baby, the mother may also be struggling to come to terms with the events of the previous weeks and months. No allowances are made for mothers in terms of maternity benefit or leave when a baby is born preterm and this may add to the pressure on the family if the mother has no choice or flexibility in when she has to return to work. Depending on where they live, the family may be eligible to access Sure Start services.

102 Bliss 2011 – Bliss Community Health Professionals’ Information Guide Postnatal depression 9 Postnatal depression is a serious disorder that has been found to affect up to 20 per cent of women six weeks after childbirth.7 For most parents, the birth of their preterm baby can be a time of great anxiety and stress and many parents will feel depressed, angry and isolated. Not surprisingly, therefore, postnatal depression is found to be greater in mothers of preterm babies (and also in mothers of twins and more). As discussed in Chapter 10, The preterm child’s health and development, this may affect the growth and development of the baby.

Layla’s story Layla is the mother of Daisy, who was born at 24 weeks weighing 1Ib 7oz. “I don’t honestly think I was really aware of the scale of what we went through until a couple of months after getting Daisy home. I started having

the most horrible nightmares and started sleepwalking and screaming, Encouraging healthy family relationships seeing Daisy like she was when she was really poorly.

My health visitor was excellent and between her and my doctor I was diagnosed with post traumatic stress disorder. It took a number of months, and counselling sessions, to deal with what we had been through and what we had seen on our journey. I did not go back to work as I didn’t think it was the right thing for Daisy. I still find it really hard to leave her with anyone. I have only let grandparents babysit a couple of times and only in our house. I don’t know when I will be less protective but I will get there. It’s just about taking it one step at a time.”

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 103 9 Post traumatic stress disorder (PSD) The capacity of parents to adjust to a preterm birth (with the baby not corresponding to expectations, separation, invasive treatment and anxiety) has been considered to be a critical factor in many recent studies. Preterm birth may cause considerable stress for parents and result in post traumatic stress disorder symptoms such as invasive memories, attempts to avoid or ignore certain specific experiences and emotional vigilance which may have implications with regard to the transition to parenthood.8 It is important therefore for community health professionals to acknowledge that post traumatic reactions can occur after a birth and that supportive care and psychological help may be needed.9 Postnatal depression in men Depression among new fathers, who have to adjust to new gender roles and parental responsibilities, has received little attention. However, there is some evidence that men experience depression after the birth of a child, and that paternal depression is linked to maternal depression. During the first year after the baby’s birth, the incidence of paternal depression has been found to range from 1.2 per cent to 25.5 per cent in community samples, and from 24 per cent to 50 per cent among men whose partners were experiencing postnatal depression.10 Maternal depression has been identified as the strongest predictor of paternal depression during the period immediately after the baby’s birth with depression levels tending to be mild to moderate. Symptoms for men usually start later after Encouraging healthy family relationships the birth than for women and can persist for up to a year.11 It is important therefore for you to consider whether or not both parents may be suffering from depression.

104 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 9 Things to look out for

Predictors for postnatal depression Significant predictors for postnatal depression in mothers of preterm babies include: • Prenatal depression • Poor social and family support • Life stress • Low socio-economic status • Low self-esteem • Childcare stress • Prenatal anxiety • Poor relationship with partner • Difficult temperament of the baby • Unplanned or unwanted pregnancy

Recognising depression The signs and symptoms of depression include:

• Crying Encouraging healthy family relationships • Anxiety • Panic attacks • Sleeplessness or early waking • Excessive fatigue • Feeling unable to cope • Indifference to the baby • Frequent concerns about the baby • Memory loss • Feelings of unreality • Loss of self-esteem • Loss of, or excessive appetite • Inability to concentrate • Antagonism towards partner

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 105 9 Assessment of postnatal depression Routine assessments, for example, using the Edinburgh Postnatal Depression Scale (EPDS, a screening tool developed specifically for health visitors), are carried out by community health professionals in many organisations. It may be particularly appropriate for you to offer ‘listening visits’, as a first line intervention for women with preterm babies found to be depressed or felt at risk of depression. In addition to any tool you should also use your own intuition, clinical knowledge and experience, along with keen observation to pick up cases of postnatal depression. This is done by observing the interaction between mother and baby, discussing the mother’s own well-being, listening to what the mother is saying and observing her mood.12 A study to improve the early detection and treatment of postnatal depression has found that a substantial number of women were identified for the first time as likely to be suffering from postnatal depression 12 months after giving birth.13 The authors concluded that community health professionals should screen for postnatal depression throughout the period of their contact with mothers, not solely in the period immediately after giving birth. This conclusion may be particularly appropriate for mothers with preterm babies. Intimate partner abuse Intimate partner abuse (formerly known as domestic violence) is reported by up to one in four women in Britain. It encompasses physical, sexual, emotional and psychological abuse. The psychological and social consequences of intimate Encouraging healthy family relationships partner abuse include alcohol and drug dependence, suicide attempts, depression and post traumatic stress disorder. Intimate partner abuse is also associated with preterm birth and low birthweight, and it has been found that a pregnancy within the past 12 months doubled the risk of physical violence.14 You should be aware, therefore, that some women who have had preterm babies may be vulnerable to intimate partner abuse and should provide appropriate support and advice to them. Child protection issues As discussed in Chapter 7, Going home, although all families who have a preterm baby will need continuing help and support, some families are more vulnerable than others. In particular, higher rates of child abuse and neglect have been reported among preterm babies, and, childhood neglect is also significantly associated with delayed cognitive development and head growth. You will already be aware of other factors that may indicate child abuse and neglect, and each organisation will have its own child protection guidelines and referrals systems for you to follow.

106 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 9

How community health professionals can improve outcomes Encouraging healthy family relationships Your role is vital in assisting healthy family relationships and for giving the preterm or sick baby the best possible chance of a healthy future. You can relieve stresses upon both parents, communicate with the neonatal unit, answer questions, interface with the GP and social services if necessary, assist with hospital appointments and offer emotional support when it may be very much needed. Valuable insights can be obtained by reading the parent stories on the Bliss website www.bliss.org.uk/parentstories Bliss has an active parent forum within its website in which parents may share experiences and discuss feelings with others in a similar situation.

Bliss 2011 – Bliss Community Health Professionals’ Information Guide 107 9 References 1, 2, 3. Hummel P, Parenting the High-Risk Infant. NBIN 2003; 3(3):88-92

4. Tommiska V, Östberg M, Fellman V, Parental stress in families of 2-year old extremely low birthweight infants. Archives of Disease in Childhood Fetal and Neonatal Edition 2002; 86(3) F161-F164

5,6. Tiedje L B, Promoting Father-Friendly Healthcare. American Journal of Maternal Child Nursing 2003; 28: 6, 350-357

7. Davies B, Howells S, Jenkins M, Early detection and treatment of postnatal depression in primary care. Journal of Advanced Nursing 2003; 44: (3), 248-255

8, 9. Pierrehumbert, B L et al, Parental post-traumatic reactions after preterm birth: implications for sleeping and eating problems in the infant Archives of Disease in Childhood Fetal and Neonatal Edition 2003; 88:5, F400-F404

10, 11. Goodman J H, Paternal postpartum depression, its relationship to maternal postpartum depression and implications for family health. Journal of Advanced Nursing. 2004;45:26-35

12. Rowley C, Dixon L, The utility of the EPDS for health visiting practice. Community

Encouraging healthy family relationships Practitioner 2002; 75: 10, 385-389

13. Davies B, Howell S, Jenkins M. Journal of Advanced Nursing 2003; 44: (3), 248- 255

14. Thompson J, Pregnancy: depression and domestic violence. Community practitioner 2004; 77:5, 192-193

108 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 10 The preterm child’s health and development

resources available. alleviate and/orreducethesenegativeinfluencesbymakinguseofallthe particularly inrelationtocognitivedevelopmentandlanguageskills. and adversesocialfactorsmaycontributetopooreroutcomesforthechild, Postnatal influencessuchaspoornutrition,achallenginghomeenvironment healthy development. shown toreducematernaldistressandarebelievedpromotethebaby’s programmes–suchasthosethatyoucanprovidehavebeen and intervention parents andvalidationoftheirparentingskillsisimportant.Parentalsupport development needstobecloselymonitored.Providingcontinuedsupport Following dischargefromtheneonatalunit,pretermbaby’s healthand • • • 10. Thepretermchild’s healthanddevelopment being smallwhenattendingthe childhealthclinic. on anyweight,orbesensitivetoremarksfromotherparents abouttheirbaby women mayalsoavoidattendingclinicsessionsincasetheir childhasnotput weighs ratherthanontimespentdiscussinganyunderlying difficulties.Some feelings ofinadequacyincreasedwhentheemphasiswas placed onweekly they feltasenseoffailurewhentheirbabywasnotgaining weightandtheir and depressioninthebaby’s parents.Instudies,womenhavereportedthat use ofthenegativedescriptiveterm‘failuretothrive’cancontribute toanxiety baby gainsweight.Repeatedweighingofchildrenwithfaltering growthorthe for gestationalage’babiesmayfeelunderintensepressure toensurethattheir lowbirthweightbabiesorwith‘small should beawarethatparentswithvery While itisimportanttomonitorthepretermbaby’s weightgainandgrowth,you Pressures onparents Weight gainandgrowth family undueanxiety. therefore beexercisedbetween monitoringthebaby’s growth and causingthe development. maternal distressandarebelievedtopromotethebaby’s healthy Regular, supportivevisitsfromhealth visitorshavebeenshowntoreduce depression inthebaby’s parents. negative descriptiveterm‘failuretothrive’cancontributeanxietyand Repeated weighingofchildrenwithfalteringgrowthortheuse ensure thattheirbabygainsweight. with ‘smallforgestationalage’babiesmayfeelunderintensepressureto lowbirthweightbabiesor It isimportanttorememberthatparentswithvery

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 2 Professionaljudgementmust 1 You can

111 10 The preterm child’s health and development 10 Early weight gain and growth The early growth of a baby born preterm is the result of a complex interplay of nutritional and endocrine factors that is incompletely understood.3 Growth status is an important index used to monitor the overall health of very low birthweight babies, which is defined as less than 1,500g.4 Studies suggest that very low birthweight babies grow differently than higher birthweight babies, and reduced neonatal growth continues to be a major problem, especially among the smallest and sickest babies.5 Poor postnatal growth is associated with neuro-developmental impairment and other developmental difficulties. Reduced neonatal growth of very low birthweight babies may also influence adult growth attainment and have long term implications for adult health.6

Reduced height and/or weight gain Many parents find the phrase ‘failure to thrive’ distressing and health professionals are advised to avoid this description. Despite there being no consistent definition for reduced height and/or weight gain, a fall across two centile channels or a fall beneath the second centile on standardised growth charts for at least three months (to exclude weight loss secondary to an acute illness) are well-established criteria for identification of this condition.7 The preterm child’s health and development The preterm child’s

112 Bliss 2011 – Bliss Community Health Professionals’ Information Guide unique growthpatterns. the charts.http://rcpch.hosting.opendev.net/research/uk-who-growth-charts Organization 0-4 years growth charts growth years 0-4 Organization persistent problems. with atransientprobleminweightgainadditiontothosemore has lessimplicationofseverityorpersistence,coveringthespectrumchildren The term‘falteringgrowth’hassimilarrecognitioncriteriato‘failurethrive’but Faltering growth associated withthepoorestgrowth. difficulties andfeedingproblems. illnessis To alesserextent,respiratory at anincreasedriskofpoorsomaticgrowth,neurologicaland developmental Children whoarebornat25completedweeksofgestational ageorlessare pretermbabies Risks facingvery formula feeds. there aresomelong-termhealthdisadvantagesassociated withfastgrowthon babies, notonlyinweightbutalsolength.However, researchindicatesthat nutrient intake.Formula-fedbabieswillalsogrowmorerapidly thanbreastfed fed babiesarewellrecognisedandhavebeenattributedto differencesin lowbirthweightbreastfedandformula- Differences inthegrowthpatternofvery Factors affectinggrowth from birthtotheageoftwoyears.Aleaflet, for plottinggrowthmeasurementsofpretermand/orlowbirthweightinfants four months.Thesuiteofdocumentsalsoincludechartsspecificallydesigned and WHOdataarebasedoninfantswhohavebeenbreastfedforatleast predominately formulafedbabies.TheUK-WHOgrowthchartscombineUK90 in 2009andreplacedthepreviousUK1990chartswhichwerebasedon The UK-WHOgrowthchartsforchildrenuptofouryearsofagewerepublished Centile charts inhibited. height towardswhatheorshewouldhaveattainedhadgrowthnotbeen after aperiodofgrowthinhibition,theeffectwhichistoraisechild’s Catch-up growthhasbeendefinedasaheightvelocitygreaterthannormal Catch-up growthinheight supporting thebaby’s healthydevelopment. emotional problemsandchronicconditionssuchasasthmaorcoeliacdisease. other causesofshortstaturesuchasanendocrinedisorder, environmentaland measuring heightvelocity, shouldincludefamilialshortstatureandpossible fail tocatchupbythisagearedestinedremainsmall.Otherfactors,when infants achievenormalagerangestaturebytheoffouryears;thosewho other significantpsychosocial factors. affected byhomeenvironment, caregivingpractices,theeffectsofpoverty, and 9 Between80percentand90of‘smallforgestationalage’ 10 Cerebralpalsyisfrequentlyassociatedwithpoorgrowthand 8 11

Bliss 2011– 12 However, postnataloutcomeisalso 13 , isalsoavailabletosupportyouinusing Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss Again,youhaveasignificant rolein Using the new UK-World Health Health UK-World new the Using

113 10 The preterm child’s health and development 10 Referrals When other measures such as feeding advice are unsuccessful, and reduced growth or faltering weight gain has been identified, a referral should be made through the appropriate health professional such as a paediatrician or GP. Referrals may also be made to a speech therapist, dietitian or play therapist, for example. Early identification of poor postnatal growth patterns can be very helpful because they alert clinicians to a timely assessment of neuro- developmental status and thus, if appropriate, initiate early intervention programmes.14

Points to remember Factors that can negatively affect growth: • Medical complications such as Chronic Lung Disease and frequent illness. • A poor home environment or low income. Childhood neglect is also significantly associated with delayed cognitive development and head growth.15 • Postnatal depression. Although there is a strong need for caution before making any assumptions, there is some correlation between depression in mothers and faltering growth in their children. Depression in mothers The preterm child’s health and development The preterm child’s of children with faltering growth during the first two years of life has been found to be significantly greater than in mothers of children who are gaining weight appropriately.16 • Male sex. Researchers have found after tracking the physical growth rates of very preterm babies over a 20-year period that male preterm babies lag behind their female counterparts, while the young women not only catch up in weight and height with their normal birthweight counterparts but also exhibit similar rates of obesity.17 • Feeding-related difficulties, including gastro-oesophageal reflux and oral motor dysfunction. • Children with developmental disabilities who are at increased risk for developing feeding-related difficulties.

114 Bliss 2011 – Bliss Community Health Professionals’ Information Guide delay insitting,crawlingandwalking. of pretermbabies,babywalkerscanalsoaffectmuscledevelopment,leadingto baby, but,inthecase asnot only aretheyafrequentcauseofaccidentalinjury as necessary. Parentsshouldbeadvisedagainst babywalkersfortheirpreterm and thechildshouldbereferredtoapaediatricianordevelopmentteam range aftercorrectionforgestationalagecouldsuggestabnormaldevelopment of stimulationandneglect.However, failuretoobtainaskillbythelatterage nutrition andirondeficiencyanaemiamaycauseslowdevelopment,ascanlack For theextremelypretermbaby, thereislikelytobesomeglobaldelay. Poor late walkingortalking,mayruninthefamily. age rangewithin‘normal’development,andsomeskillsuchas developmental milestonesofasix-month-oldbaby. Thereis,ofcourse,awide so anine-month-oldbabybornthreemonthspretermshouldhavethe level ofpretermbabiesshouldbeassessedatthecorrectageforgestation, Unlike commencingweaningorimmunisationschedules,thedevelopmental Developmental milestones attention span. cognitive disabilitiessuchasproblems inlearning,behaviourand preterm babiesshouldbecontinued atleasttopre-schoolageinorderdetect palsy, areusuallydiscoveredbytheageof twoyears.However, follow-upfor all that thetimingsaremoremanageable. Majordisabilities,suchascerebral professionals canhelpbyoffering torearrangesomeoftheappointmentsso to manageiftheylivesomedistancefromthehospital.Community health more thanoneaweekintheearlystages.Parentsmayfind thisdifficult Some babiesmayrequirefrequentfollow-upmedicalappointments, sometimes Follow-up appointments

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss

115 10 The preterm child’s health and development 10 Behavioural and cognitive problems Very preterm and very low birthweight children not displaying classical neurological signs and in mainstream education may still be vulnerable to problems later in childhood, particularly behavioural, attention and cognitive disorders. Despite these concerns, however, the great majority of children who are born preterm enter mainstream education. Attention is increasingly being turned to the quality of life of these children and their educational and behavioural status.18 Studies of these children have shown that as many as 40 per cent may show learning difficulties, often associated with problems of visuospatial perception, minor motor impairments and behavioural difficulties. The origin of these difficulties has been attributed, variously, to a delay in neurologic maturation, early cerebral injury, social factors and poor early growth.19 Most children who are born preterm and receive good support from family and health care professionals will enter mainstream education and thrive both physically and mentally. The contribution of good health care, including support from community health professionals, cannot be over-emphasised.

Educational issues Some ten to 15 per cent of children born in the United Kingdom with very low birthweight (less than 1,500g) will have major physical impairments that usually

The preterm child’s health and development The preterm child’s require special educational provision, but the majority will enter mainstream school.20

Growth in adolescence Recent reports of the adolescent growth attainment of very low birthweight babies indicate that some catch-up occurs during childhood; however, they continue to lag behind in growth when compared with normal birthweight children.

116 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 2011, infants preterm weaning on statement consensus Weaning problems. Smallbabiesmayalso needtobeofferedfoodfourfivetimesa possible intothebabytomaximise weightgainasthismayleadtofeeding Parents shouldbediscouraged frompushingasmuchfoodandmilk baby isreadyandintroducing lumpyfoodsatsixtoeightmonthsfrombirth. guidelines fortermbabiesshould befollowed,includingfingerfeedingwhenthe Once adecisionhasbeenmadetostartweaning,thenormal weaning www.bapm.org/nutrition/guidelines.php eight months(uncorrectedage)frombirth. It isadvisedthatweaningshouldbestartedinpretermbabies betweenfiveand term baby. their gutfunctionismuchmorematureatexpectedbirthday thanthatofa systems developmorerapidlythaniftheyhadremainedin utero.Duetothis From thetimepretermbabiesarefirstgivenenteralfeeds their gastrointestinal will differaccordingtothedegreeofprematurity. appropriate forpretermorsicknewbornbabies.Whenababyisreadytowean acknowledges thatthesedeadlinesareforhealthy, termbabiesandarenot for sixmonthsbeforesolidfoodsareintroduced.TheDepartmentofHealth Government guidelinesfortermbabiesnowadviseexclusivebreastfeeding long chainpolyunsaturatedfattyacids,zinc,iron,calciumandselenium. from theneonatalunit.Theseadditionalrequirementsincludeenergy, protein, Low birthweightpretermbabieshavespecialnutritionalneedsafterdischarge to lookforappropriatecueswhichareoutlinedinarecentpiece ofwork, start toshowreadinesscuesforintroducingsolidsfood,parents canbehelped

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 21 Aroundthistimebabiesshould A A

117 10 The preterm child’s health and development 10 day, especially those who are still catching up with their growth. Fortification of solid meals with high energy foods and extra fat should be considered. It is vital to monitor growth following the introduction of solids and refer the infant to a dietitian should weight velocity start to slow significantly.22 The neonatal unit may have a dietitian who is happy to offer advice following the baby’s discharge. The above guidance on weaning is supported by the Paediatric Group of the British Dietetics Association. Also see the Bliss booklet Weaning your preterm baby (sixth edition, 2010).

Why weaning is advised between five and eight months: • Weaning should commence between five and eight months actual not( corrected) age. • Delayed weaning causes problems later with different tasting food and coping with lumps – mainly because the baby has missed out on the critical phases of developing taste from four to six months and establishing the ability to cope with lumps from six to eight months. • A good variety of foods from the beginning will help ensure nutritional adequacy and help ensure any sensitive periods for accepting new foods are not missed. • Many behavioural feeding problems can be avoided if preterm babies are on solids by seven months from their birth date at the latest.

The preterm child’s health and development The preterm child’s • Preterm babies are at no more risk of food allergies than term babies.

118 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 5. HackMetal, 111: 4,750-758 extremely low birthweight infants. infants. birthweight low extremely 15. StrathearnLetal, Pediatrics 2003;143:2,163-170 17. Hack,(Pediatrics2003;112: 1,e30-e38) 16. O’Brien,(Pediatrics2004;113:5, 1242-1247) 13. KilbrideHetal, 2. O’BrienLMetal, Neonatal Edition2002;86(3)F161-F164 Very Low Birthweight (1500 Grams) Infants in the United States. States. United the in Infants Grams) (1500 Birthweight Low Very 11. RobertsonC, 7. O’BrienLMetal, 6. Hack,(Pediatrics2003;112:1,e30-e38) 4. Sherry Betal, 4. Sherry Fetal andNeonatalEdition2003;88:F492 9. LeePA etal, 8. O’Brien,(Pediatrics2004;113:5,1242-1247) 10. SinghalA,Lucas 3. EPICure:Wood NSetal, 1. Tommiska V, ÖstbergM,FellmanV, References 12. EPICure The JournalofPediatrics2003;142:2,145-146 Pediatrics 14. Latal-HajnalBetal, Low Birthweight Infants: A Prospective Study. Study. Prospective A Infants: Birthweight Low Compared With Full-Term Siblings. Full-Term With Compared hypothesis? Study. Study. of Growth Hormone Treatment in Children Who Are Born Small for Gestational Gestational for Small Born Are Who Children in Treatment Hormone Growth of Age. Pediatrics2003;112:1,150-162 Pediatrics 2004;113:5,1242-1247 Pediatrics 2004;113:5,1242-1247

2003; 112:1,e30-e38 The EPICure study EPICure The The Lancet2004:363:1642-1645 Persistent Short Stature, Other Potential Outcomes, and the Effect Effect the and Outcomes, Potential Other Stature, Short Persistent Catch-up growth among very-low birthweight preterm infants. infants. preterm birthweight very-low among growth Catch-up Growth of Very Low Birthweight Infants to Age 20 Years. Years. 20 Age to Infants Birthweight Low Very of Growth Evaluation of and Recommendations for Growth References for for References Growth for Recommendations and of Evaluation Preschool Outcome of Less Than 801-Gram Preterm Infants Infants Preterm 801-Gram Than Less of Outcome Preschool Postnatal Depression and Faltering Growth: A Community Community A Growth: Faltering and Depression Postnatal Postnatal Depression and Faltering Growth: A Community Community A Growth: Faltering and Depression Postnatal Childhood Neglect and Cognitive Development in Extremely Extremely in Development Cognitive and Neglect Childhood Early origins of cardiovascular disease: is there a unifying unifying a there is disease: cardiovascular of origins Early Postnatal growth in VLBW infants. infants. VLBW in growth Postnatal The EPICure study. study. EPICure The

2003;88:F492 Bliss 2011– Pediatrics2004;113;4,742-747 Archives ofDiseaseinChildhoodFetaland Parental stress in families of 2-yearold 2-yearold of families in stress Parental Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss Pediatrics 2001;108:1,142-151 Archives ofDiseaseinChildhood The Journalof Pediatrics 2003;

119 10 The preterm child’s health and development 10 18. O’Brien, (Pediatrics 2004; 113:5, 1242-1247)

19. Abernethy L, Cooke R, Foulder-Hughes L, Caudate and Hippocampal Volumes, Intelligence, and Motor Impairment in 7-year-old children who were born preterm. Pediatric research 2004; 55:5, 884-893 20. Abernethy, (Pediatric research 2004; 55:5, 884-893)

21. King C, King CL, An evidence based guide to weaning preterm infants. Paediatrics & child health 2009; 19:9: 405-414

22. Marriott L D et al, Weaning preterm infants: a randomised controlled trial. Archives of Disease in Childhood Fetal Neonatal Edition 2003; 88:-F302- F307 The preterm child’s health and development The preterm child’s

120 Bliss 2011 – Bliss Community Health Professionals’ Information Guide 11 Glossary and Bliss resources

Glossary The most common perinatal and neonatal medical conditions are listed alphabetically below. Glossary Apnoea Normal respiration rates for infants are 40-60 breaths per minute. All babies, especially preterm babies, may take pauses of five to ten seconds between breaths. True apnoea is a time delay of greater than this, and this is rare in term infants, but not uncommon in those born preterm. These episodes of loss of effective breathing can lead to hypoxia and bradycardia. Minor episodes can be managed by gentle stimulation but more frequent or prolonged episodes may require treatment with respiratory stimulants or in the most severe cases positive pressure ventilation.1

Chronic Lung Disease (CLD) Chronic Lung Disease (CLD) is a major cause of morbidity and mortality among very low birthweight babies (weighing less than 1,500g). CLD has been reported in between ten per cent and 40 per cent of very low birthweight infants in different studies. It is a major cause of long term pulmonary complications including recurrent respiratory infections, reactive airway disease and abnormal pulmonary function. In addition to respiratory disease, survivors with CLD have an increased risk of cerebral palsy, mental impairment and other less serious motor and cognitive disorders. CLD, in most cases, correlates with the pathologic process known as bronchopulmonary dysplasia (BPD).2 Risk factors for CLD include: • Gestational age • Birthweight for dates • Mechanical ventilation • White race • Pulmonary air leak • Patent ductus arteriosus • Septicaemia • Acute respiratory distress • Chorioamnionitis

Jaundice (Hyperbilirubinaemia) As liver function is initially poor in newborn infants, mild jaundice is common. If necessary, this can be treated by exposure to blue light, which converts bilirubin into substances that can be excreted by the kidney.3 As preterm babies have more immature red blood cells (and can therefore produce more bilirubin) and have more persistent immaturity of liver function (and are thus less able to clear it) they are more prone to jaundice. Every jaundiced baby needs assessing and, if the bilirubin levels are high or if the baby is not feeding well or is dehydrated or if the jaundice is prolonged (such as lasting for more than two to four weeks), the baby needs to be referred for further investigation.

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Glossary

distress syndrome.Arecommendedcoretemperature increases andthereisanincreasedriskofpoorgrowthrate andrespiratory mortality If pretermorlowbirthweightbabiesbecomecoldafterdelivery • • • • This isbecausepretermandsickbabieshave: vulnerable. preterm babiesandthosewithintrauterinegrowthrestrictionareparticularly Allnewbornbabiesaresusceptibletobecomingtoocoldbut Hypothermia and intravenousglucose. intravenous dextroseifnot.Anysymptomaticinfantneedsurgentassessment cause cerebraldamage.Treatment canincludeenteralfeedsiftolerated,and Early detectionandtreatmentisessentialassymptomatichypoglycaemiamay • • • • • • • • thereafter. Causesinclude: of lessthan2.6mmol/Linthefirst24-hourslife,and3.5 Hypoglycaemia istraditionallydefinedasabloodglucoselevel • • • • • • born include: and hypoglycaemia).Conditionsthatmayrequireresuscitation whenthebabyis haemorrhage, heartfailureandmetabolicdisturbances(such ashypocalcaemia after birth)includebraininjury, seizures,increasedincidenceofintraventricular to avoidpostnatalhypoxia.Seriousconsequencesofhypoxia (beforeand Hypoxia before birthEffectiveresuscitationofinfantsisextremelyimportant essential. detrimental andmaintainingthetemperaturewithinnormal rangeis infant is36.7to37.3°C.Itshouldbenotedthathyperthermia mayalsobe Bliss 2011 very permeableskin. very limited controloftheirbodytemperature reduced orabsentfatstores(particularlybrownfat) a largesurfaceareatobodyratio Exchange transfusion Adrenal insufficiency A diabeticmother Hypothermia Chronic asphyxia Delayed feeding Prematurity Intrauterine growthrestriction Prolonged ordifficultlabour Serious fetalabnormality Multiple pregnancy Low birthweight(duetoprematurity and/orreducedgrowth) Antepartum haemorrhage Fetal distress – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – 4 5 for the very preterm forthevery • • • infants aremoresusceptibleduetotheirrelativeimmunedeficiency. Infection isamajorcauseofneonatalmortalityandmorbidity. Newborn times. resuscitation. Skilledresuscitationmustthereforebeimmediatelyavailableatall In manycasestherearenoidentifiableriskfactorsininfantswhohaverequired infection. The numberofinvasiveproceduresthattheyneedalsoincreasestheirrisk particularly poorimmunity, withlesseffectivecutaneousandmucosalbarriers. lowbirthweightbabies.Thisisbecausepretermbabiesoftenhave care andvery incidence ofinfectionismorethandoubledinbabiesneedingneonatalintensive diagnosed atamuchlaterstage. consequences ofintracranial haemorrhage iscerebralpalsy, whichwouldbe be exercisedbeforegivingprecise estimatesofprognosis.Onethepossible accuratepredictorand cautionshould developmental outcomeitisnot avery Although thereisanassociationbetweenthegradeofIVH and adverseneuro- The prognosistosomeextentdependsupontheof haemorrhage. scans candetectfourgradesofIVH,withgradeIVbeingthe mostserious. majority ofallcasesIVHarediagnosedonroutineultrasound scans.Ultrasound IVH usuallyoccursinthefirstweekoflifebuthasbeennoted antenatally. The immaturity, distresssyndrome,pneumonia,hypoxiaandhypotension. respiratory haemorrhage, arisingparticularlyinimmaturebabies.Risk factorsforIVHinclude Intraventricular haemorrhage(IVH)isthemostcommontype ofintracranial • • • • • origin, withdifferentprognoses.Themajortypesofintracranialhaemorrhageare: babies. Thereareseveraldifferenttypesofhaemorrhagedependingonsite Intracranial haemorrhageThisisarelativelycommonconditioninpreterm • gut. Anotherpotentialsourceofcontaminationiswaterfrombirth. Intrapartum Vaginal birthcanresultincontaminationofthebaby’s skinand devastating effectsonthefetus(forexample,rubella). Transplacental Someagentscancrosstheplacentalbarrierandthishas longer thatthishappenspriortobirth. likely tooccuroncethemembranesarerupturedandriskincreases the majorriskfactoriscontactfromotherpeople. Postnatal Allbabiesaresubjecttocontaminationfromtheenvironmentand Intracerebellar Intraparenchymal Intraventricular Subarachnoid Subdural particularly incasesofGroupBStrepandStaphAureus. Ascending Thisisrareifthemembranesareintactbuthasbeenrecognised, 7 Babiesareexposedtoinfectioninfourways:

Bliss 2011– Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss 10

8 Colonisationismore 6 The 9

125 Glossary Necrotising enterocolitis (NEC) Approximately five to ten per cent of very low birthweight infants develop necrotizing enterocolitis (NEC).11 The cause is considered to be multifactorial, with a variety of predisposing risk factors including prematurity, intrauterine growth restriction, poor gut blood flow as

Glossary shown on doppler studies, lack of exposure to antenatal steroids, being of African Caribbean origin, patent ductus arteriosus (PDA) and the placement of an umbilical catheter. There is no consistent agreement that these are independent risk factors.12 During their initial acute illness, infants with NEC often require ventilator support. Some 20 per cent to 50 per cent of babies with NEC require surgical management and suffer more morbidity, such as infection, retinopathy of prematurity (ROP), or bronchopulmonary dysplasia (BPD), which lengthen their hospital stay.13 Infants with NEC can often experience difficulties with feeding and poor growth and there is a strong association between more severe grades of NEC and poor neurodevelopmental outcome.

Patent ductus arteriosus (PDA) The ductus connects the pulmonary artery to the aorta and provides a pulmonary-to-systemic diversion during fetal life. In most term babies the ductus closes functionally within the first three days after birth. In some babies, especially preterm babies, there is delayed closure and in a proportion this may have a significant impact upon the infant. PDA is associated with increased mortality and morbidity in preterm babies14 and increases the risk of IVH, NEC, Chronic Lung Disease, bronchopulmonary dysplasia and death.15 There is controversy as to whether and when the ductus should be closed by either pharmacological or surgical methods. The most common medication used to close a PDA is indomethacin, although use is associated with renal, gastrointestinal and cerebral side effects.16 Surgery is indicated if other treatments are clearly contraindicated and the baby’s clinical condition warrants it but there is increasing evidence to suggest that surgery should be avoided unless absolutely essential.17

Reduced growth Slow growth in early childhood is very common in preterm babies. This is seen more commonly in the extremely preterm or very low birthweight babies and in those who have suffered long term illness. Babies who have been treated with prolonged courses of systemic steroids for chronic lung disease are also more commonly affected.18

Respiratory distress syndrome Pulmonary immaturity associated with surfactant deficiency leads to diffuse atelectasis and decreased lung compliance. Mechanical ventilation of a newborn with very small lung volumes, a compliant chest and increased incidence of patent ductus arteriosus may lead to barotraumas and volutrauma and initiate or exacerbate more chronic respiratory disease (bronchopulmonary dysplasia).

126 Bliss 2011 – Bliss Community Health Professionals’ Information Guide need treatmentwithlasertherapy. the neonatalunit.MostmildROPregressesbutbabieswithmoreseveremay closelydefinedwindowofpostnatalagewhileon must bescreenedwithinavery prematurity andlevelsofarterialoxygen.Allpretermbabieswithsignificantrisk 8. Ben-DavidY, HallakM,EvansMI,Abramovici H, 7. Tortora, (JohnWiley&Sons,1996) 3. Tortora G,ReynoldsS, Research 2002;52:713-719 2. RedlineW, Wilson-CostelloD,Hack M, 2004. Chichester, UK:JohnWiley & Sons,Ltd. 4. StephensonT, Marlow N,Watkin S,GrantJ, Wiley &Sons,1996) apnoea in preterm infants (Cochrane Review). Review). (Cochrane infants preterm in apnoea environment of healthy very low birthweight infants in week one of life. life. of one week in infants birthweight low very healthy of environment factors. including growthrestriction,gestationalage,useofsurfactantandgenetic amounts ofoxygenbutitisnowevidentthatotherfactorsarealsoinvolved and blindness.Itwasoriginallythoughttobeentirelycausedbyexcessive preterm babies.Inseverecasesitcanleadtopartialortotalretinaldetachment Retinopathy ofprematurity (ROP)Thisisavasoproliferativeretinopathyaffecting • • These include: Other respiratory disorders 1995; Vol 40;No6,eite485 Erscheinungsdatum 1995.Zeitschrift JournalofReproductiveMedicine.Ausgabe 1. Henderson-SmartDJ,OsbornA, References 5. SauerPJ,DaneHVisserKA, Livingstone, 2000) Factors for Chronic Lung Disease in Very Low Birth Weight Infants. Infants. Weight Birth Low Very in Disease Lung Chronic for Factors birthweight infants in intensive care nurseries. care intensive in infants birthweight Delivery with Intact Amniotic Membranes Involving Staphylococcus aureus. aureus. Staphylococcus Involving Membranes Amniotic Intact with Delivery 6. FaixRGetal, Disease inChildhood1984;59:18-22 aspiration syndrome. diseasesuchaslunginfectionandmeconium acquired respiratory diaphragmatic herniaandhypoplasticlungs the structurallyabnormallungasseenininfantswithcongenital 19 ThetwomajorfactorsindeterminingseverityofROParethedegree Mucocutaneous and invasive candidiasis among very low low very among candidiasis invasive and Mucocutaneous Principles of Anatomy and Physiology, and Anatomy of Principles

Bliss 2011– 20 New standards for neutral thermal thermal neutral for standards New Kinesthetic stimulation for preventing preventing for stimulation Kinesthetic Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss Placental and Other Perinatal Risk Risk Perinatal Other and Placental Pediatrics198983:101-107 Pocket Neonatology Pocket The CochraneLibrary, Issue2, Amnionitis and Preterm Preterm and Amnionitis 8thedition(John Pediatric , (Churchill Archives of

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Glossary

17. CosterDetal, 16. Shah,(TheCochraneLibrary, Issue2,2004) Library, Issue2,2004.JohnWiley&Sons,Chichester Ophthalmology 112:903-912 15. ShahSS,OhlssonA, Library, Issue2,2004.Chichester, UK:JohnWiley&Sons,Ltd. 10. RennieJ,RobertsonNRC, 20. 18. Woods NSetalfortheEPICureStudyGroup, 11. BisqueraJ,CooperT, BersethC,I Livingstone 1999 9. HawkinsS,1995:W 19. FlynnJTetal, Archives ofDiseaseinChildhoodFetalandNeonatalEdition2003;88:F492 in preterm and/or low birthweight infants (Cochrane Review). (Cochrane infants birthweight low and/or preterm in Neonatal Intensive are Unit, Unit, are Intensive Neonatal transcutaneous oxygen monitoring. monitoring. oxygen less. or age transcutaneous gestational of weeks 25 at born children in problems associated of Stay and Hospital Charges in Very Low Birthweight Infants. Infants. Birthweight Low Very in Charges Hospital and Stay of mortality and morbidity in preterm infants (Cochrane Review) Review) (Cochrane infants preterm in morbidity and mortality Natural Ocular Outcome of Preterm Birth and Retinopathy 1994. 1994. Retinopathy and Birth Preterm of Outcome Ocular Natural 14. FowliePW, DavisPG, 13. Bisquera,(Paediatrics2002,3:423-426) 12. Bisquera,(Paediatrics2002,3:423-426) 3:423-426 Bliss 2011 Cryotherapy for Retinopathy of Prematurity Cooperative Group, The The Group, Cooperative Prematurity of Retinopathy for Cryotherapy – Bliss Community Health Professionals’ Information Guide Information Professionals’ Health Community Bliss – Retinopathy of Prematurity. A randomised prospective trial of of trial prospective randomised A Prematurity. of Retinopathy Surgical Closure of the Patent Ductus Arteriosus in the the in Arteriosus Ductus Patent the of Closure Surgical ater vs. conventional births. births. conventional vs. ater Ibuprofen for the prevention of patent ductus arteriosus arteriosus ductus patent of prevention the for Ibuprofen Prophylactic intravenous indomethacin for preventing preventing for indomethacin intravenous Prophylactic Annals of Thoracic Surgery 198948:386-389 Annals ofThoracicSurgery Textbook of Neonatology, of Textbook mpact of Necrotising Enterocolitis on Length Length on Enterocolitis Necrotising of mpact Ophthalmology 1987,4:630-638 The EPICure study: growth and and growth study: EPICure The Nursing Times 91:38-40 3rdEditionChurchill TheCochrane in TheCochrane Pediatrics Archives of

2002, the waysweaimtoachieveourmissionisthroughsupportingfamilies. As wellasfundingresearchandtrainingcampaigningforbettercare,oneof special carebabiesandtheirfamilies. Bliss wasestablishedin1979andistheonlyUKcharitydedicatedtoworkingfor andthateachonehasthebestqualityoflife. survive Our missionistomakesurethatmorebabiesbornprematurelyorsickintheUK direct impactontheirhealthandwellbeingfortherestoflives. critical carethatthesebabiesreceiveinthefirsthours,daysandweekshasa year.Throughout theUK,80,000babiesarebornprematurelyorsickevery The Bliss For morecallus on 02073781122orvisitwww.bliss.org.uk information of caretobeavailable,regardless ofwhenandwhereababyisborn. most vulnerablebabiesandtheir familiestobemet.We want thebeststandards birth playsakeyroleinshapingtheirfuturelives.Blissfights fortheneedsof The careprematureandsickbabiesreceiveinthefirstfew daysandweeksafter Campaigning forbettercare of goodpracticethroughoutthesector. days forhealthprofessionalstoimprovetheirskills,aswell ashelpingthespread new developmentsincarebyfundingvitalclinicalresearch andprovidingstudy Neonatal medicineisfullofconstantchangesandbreakthroughs. Blisssupports Funding research andtraining • • • • • • Our FamilySupportTeam offers: through. offering awayforparentstotalkotherswhoknowwhattheyaregoing families, helpingthemtounderstandwhatishappeningtheirbabyand experience. Blissprovidesarangeoffreeadvice,supportandinformationto Having aprematureorsickbabyisoftenfrighteningandoverwhelming Supporting families access toqualifiedcounsellors. a networkoflocalsupportgroups a wideselectionoffreeinformation,bothinprintandonline well asaninteractiveparentmessageboard a comprehensivewebsitecontaininginformationandusefulcontacts,as have gonethroughasimilarexperience toputpeopleintouchwithotherparentswho Parents4Parents –aservice a freephoneHelplineprovidinginformationandsupport

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Common winter illnesses Coughs, colds and stuffy noses affect us all throughout the year. Nobody is entirely immune, but some are at higher risk than others. For the very young and in particular those born prematurely, with lung problems or with a congenital heart condition, the high season of October to March can prove to be particularly challenging. This guide to winter illnesses has been written to provide parents with information on some of the more common infections during this period. It outlines the symptoms to look out for, treatments available and tips on how best to prevent illness.

Breastfeeding your premature baby This booklet is intended to give a greater understanding of breastfeeding a premature baby and complement the medical advice parents receive from those involved in supporting their baby. Includes: benefits of breast milk, feeding plan, expressing and storing breastmilk and top tips. This booklet is also of interest to health professionals who are supporting parents of premature or sick babies. Bliss resources

• Bliss Family Handbook • Bliss Baby Charter Standards • Bliss Parent Pack • Breastfeeding your premature baby • Comfort holding poster • Common winter illnesses • Financial advice for families • Going home – the next big step • Going home on oxygen • Kangaroo Care poster • Little bliss magazine** • Look at me – I’m talking to you! • Multiple births – a parent’s guide to neonatal care • Resuscitation DVD – basic life support for babies • RSV (Respiratory Syncytial Virus)* • Skin-to-skin with your premature baby • The next pregnancy* • Ventilation and Chronic Lung Disease – your questions answered* • Weaning your premature baby

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