Thames Valley & Wessex Operational Delivery Networks (Hosted by University Hospital Southampton NHS Foundation Trust) THAMES VALLEY & WESSEX NEONATAL OPERATIONAL DELIVERY NETWORK Guideline for Management at the Extremes of Prematurity Approved by/on: Thames Valley & Wessex Neonatal ODN Governance Group December 2020. Date of publication September 2020 Last Reviewed January 2021 Review date (Max 3 years) January 2024 Natalie Crawford, Patient Safety Felloe, O&G Trainee Lambri Yianni, Neonatal Transformation Fellow, TV&W Neonatal GRID Authors Trainee Tara Selman, UHS Consultant Obstetrician Victoria Puddy Wessex Neonatal ODN Clinical Lead Distribution Thames Valley and Wessex Neonatal Clinical Forum Thames Valley and Wessex Neonatal Network website Thames Valley and Wessex Neonatal Network e-bulletin Related documents References BAPM 2019. Perinatal Management of Extreme Preterm Birth before 27 weeks of gestation. A Framework for Practice. https://hubble-live- assets.s3.amazonaws.com/bapm/attachment/file/182/Extreme_Preterm_28- 11-19_FINAL.pdf Royal College of Obstetricians & Gynaecologists, 2014. Perinatal management of pregnant women at the threshold of infant viability (the obstetric perspective) scientific impact paper no. 41. UK: RCOG. Crowther et al Repeated doses of prenatal corticosteroids for women at risk of preterm birth for improving neonatal health outcomes. Cochrane Database Syst Rev 2015 7: CD003935 McKinlay et al Repeat antenatal glucocorticoids for women at risk of preterm birth: a Cochrane Systematic Review. Am J OG 2012 206 (3): 187- 194 https://www.togetherforshortlives.org.uk/wp- content/uploads/2018/01/ProRes-Core-Care-Pathway.pdf Macfarlane PI, Wood S, Bennett J. Non-viable delivery at 20-23 weeks gestation: observations and signs of life after birth. Arch Dis Child Fetal Neonatal Ed 2003;88: F199-202 Manktelow et al 2013 Population-based estimates of in-unit survival for very preterm infants. Pediatrics 131: e425-432 MBRRACE-UK :National clinical guidance on signs of life before 24 weeks where following discussion active survival focused care is not appropriate Nov 2020https://timms.le.ac.uk/signs-of-life/resources/signs-of-life- guidance-v1.0.pdf Page 1 of 33 Guideline for Management at the Extremes of Prematurity – Final January 2021 TV & W Governance group ratified January 2021 Neonatal Generic email: [email protected] Neonatal Website: https://southodns.nhs.uk/our-networks/neonatal Implications of race, This guideline must be implemented fairly and without prejudice equality & other diversity whether on the grounds of race, gender, sexual orientation or religion. duties for this document Guideline for Management at the Extremes of Prematurity Contents Paragraph Page 1 Executive Summary 3 2 Introduction 3 3 Scope and Purpose 4 4 Definitions/Abbreviations 5 5 Antenatal Management 5 6 Active (survival focused) obstetric management 9 7 Palliative (comfort focused) obstetric management 11 8 Summary of risks and management 12 9 Roles and Responsibilities 12 10 Implementation (including training and dissemination) 12 11 Process for Monitoring Compliance/Effectiveness of this Policy 12 12 Arrangements for Review of this Policy 13 Appendices Appendix 1 BAPM 2019 National mortality and morbidity data 14 Appendix 2 TV & Wessex 5-year survival outcome data (Professionals Information) 15 Appendix 3 Gross Motor Function Classification System (GMFCS) Grades 1-5 16 description Appendix 4 Extreme Premature Birth: Risk Assessment 17 Appendix 5 Proforma for Management Decisions at the Extremes of Viability 18 Appendix 6 Extremes of Prematurity: Parent Information Leaflet 19 Appendix 7 BAPM Communication: Guidance for professionals consulting with 25 families at risk of extreme preterm delivery Appendix 8 Grid of Predicted Survival from NNU admission (Manktelow charts) 29 Document Status This is a controlled document. Whilst this document may be printed, the electronic version posted on the intranet is the controlled copy. Any printed copies of this document are not controlled. Page 2 of 33 Guideline for Management at the Extremes of Prematurity – Final January 2021 TV & W Governance group ratified January 2021 Neonatal Generic email: [email protected] Neonatal Website: https://southodns.nhs.uk/our-networks/neonatal As a controlled document, this document should not be saved onto local or network drives but should always be accessed from the intranet. Page 3 of 33 Guideline for Management at the Extremes of Prematurity – Final January 2021 TV & W Governance group ratified January 2021 Neonatal Generic email: [email protected] Neonatal Website: https://southodns.nhs.uk/our-networks/neonatal 1. Executive Summary 1. This guideline has been developed in conjunction with the British Association of Perinatal Medicine’s (BAPM) framework ‘Perinatal Management of Extreme Preterm Birth before 27 weeks of gestation’i, produced by a multidisciplinary working group in the light of evidence of improving outcomes for babies born before 27 completed weeks of gestation, and evolving national and international changes in the approach to their care. 2. Management of labour, birth and the immediate neonatal period should reflect the wishes and values of the mother and her partner, informed and supported by consultation and in partnership with obstetric and neonatal professionals. 3. Whenever possible extreme preterm birth should be managed in a maternity facility co-located with a designated neonatal intensive care unit (NICU). 4. Neonatal stabilisation may be considered for babies born from 22+0 weeks of gestation following assessment of risk and multiprofessional discussion with parents. It is not appropriate to attempt to resuscitate babies born before 22+0 weeks of gestation. 5. Decision making for babies born before 27 weeks of gestation should not be based on gestational age alone, but on assessment of the baby’s prognosis taking into account multiple factors. Decisions should be made with input from obstetric and neonatal teams in the relevant referral centre if transfer is being contemplated. 6. Risk assessment should be performed with the aim of stratifying the risk of a poor outcome into three groups: extremely high risk, high risk, and moderate risk. 7. For fetuses/babies at extremely high risk, palliative (comfort focused) care would be the usual management. 8. For fetuses/babies at high risk of poor outcome, the decision to provide either active (survival focused) management or palliative care should be based primarily on the wishes of the parents. 9. For fetuses/babies at moderate risk, active management should be planned. 10. If life-sustaining treatment for the baby is anticipated, pregnancy and delivery should be managed with the aim of optimising the baby’s condition at birth and subsequently. 11. Conversations with parents should be clearly documented and care taken to ensure that the agreed management plan is communicated between professionals and staff shifts. 12. Decisions and management should be regularly reviewed before and after birth in conjunction with the parents; plans may be reconsidered if the risk for the fetus/baby changes, or if parental wishes change. 2. Introduction Advances in perinatal care have led to steadily improving outcomes for babies admitted to UK neonatal intensive care units (NICUs), particularly at the lowest gestational ages. Perinatal care at extremely preterm gestations will always need to be individualised and should be led by senior staff in midwifery, obstetrics and neonatology. Parents and families should be an integral part of these discussions, and their hopes and expectations explored with honesty and compassion in a realistic way. Decisions should be based on the best available evidence about the prognosis for the individual baby, and mindful of the need to act in the baby’s best interests. It is essential that such decisions reflect all relevant prognostic information and not simply gestational age. Page 4 of 33 Guideline for Management at the Extremes of Prematurity – Final January 2021 TV & W Governance group ratified January 2021 Neonatal Generic email: [email protected] Neonatal Website: https://southodns.nhs.uk/our-networks/neonatal 3. Scope and Purpose This guideline covers management of delivery and initial resuscitation of babies born extremely preterm i.e. between 22+0 and 26+6 weeks gestation. This includes the following hospitals: Thames Valley Buckinghamshire Healthcare NHS Trust - Stoke Mandeville Hospital, Aylesbury Frimley Health NHS Foundation Trust - Wexham Park Hospital, Slough Milton Keynes University Hospital NHS Foundation Trust - Milton Keynes General Hospital Oxford University Hospitals NHS Foundation Trust - John Radcliffe Hospital, Oxford Royal Berkshire NHS Foundation Trust - Reading Wessex Dorset County Hospital NHS Foundation Trust - Dorset Hampshire Hospitals NHS Foundation Trust - Basingstoke Hampshire Hospitals NHS Foundation Trust - Winchester Isle of Wight NHS Trust - St Mary's Hospital University Hospital Dorest Foundation Trust - Poole Hospital Portsmouth Hospital University NHS Trust - Queen Alexandra Hospital Salisbury NHS Foundation Trust - Salisbury University Hospital Southampton NHS Foundation Trust - Princess Anne Hospital Western Sussex Hospitals NHS Foundation Trust - St Richard's Hospital, Chichester Guideline Objectives To improve consistency in management and advice given to parents with extremely preterm pregnancies within the regional network. To