Why did babies die? A review of deaths in Neonatal Units in Wales in 2012 and 2013 Siddhartha Sen Consultant Neonatologist, Royal Gwent Hospital Clinical Lead for Quality and Safety, Wales Neonatal Network

Background Deaths, particularly childhood deaths very emotive All deaths need close scrutiny It is an undisputed outcome – no ambiguity Though a crude outcome measure, combined statistics of death, give an idea of quality and safety No review of this kind is available in Wales

Child Death Review (process) Chapter 7 of Working Together to Safeguard Children sets out the procedures to be followed when a child dies. There are two interrelated processes for reviewing child deaths (either of which can trigger a serious case review): – A rapid response by a group of key professionals who come together for the purpose of enquiring into and evaluating each unexpected death of a child – an overview of all child deaths (under 18 years) in the local safeguarding children board (LSCB) area(s), undertaken by a panel. Child death overview panels (CDOPs) are responsible for reviewing information on all child deaths, and are accountable to the LSCB chair. Child death review processes became mandatory in April 2008

MBRRACE 'MBRRACE-UK' is the collaboration appointed by the Healthcare Quality Improvement Partnership (HQIP) to continue the national programme of work investigating maternal deaths, stillbirths and infant deaths, including the Confidential Enquiry into Maternal Deaths (CEMD).HQIP  All deaths of pregnant women and women up to one year  Late fetal losses – the baby is delivered showing no signs of life between and weeks of pregnancy.  Terminations of pregnancy - resulting in a pregnancy outcome from weeks gestation onwards.  Stillbirths – the baby is delivered showing no signs of life after weeks of pregnancy.  Neonatal deaths – death of a live born baby (born at 20 weeks gestation of pregnancy or later or 400g where an accurate estimate of gestation is not available) occurring before 28 completed days after birth.  Post-neonatal deaths – occurring from the 28th day and before 1 year after birth

AWPS Gets data fed back from MBRRACE Produces annual report of – Stillbirths – Neonatal and perinatal mortality – Identifies trends – Classifies the causes of death by the CODAC classification – Neonatal, intrapartum, unknown, congenital abnormality, infection, placental and fetal

Ambiguity in data collection data for deaths This report is exclusively for deaths in Neonatal units in Wales Includes Babies born outside Wales but died in Wales Non- Welsh babies born and died in Wales Excludes Welsh babies that died elsewhere Babies that died in the delivery room and not admitted to a neonatal unit Babies that died outside a neonatal unit after discharge (e.g. PICU, Paediatric Wards, home etc)

Method Full anonymous database for Wales downloaded from BadgerNet Filtered for “death” in the “final outcome” Analysis on MS Excel

Deaths Total deaths Inborn Out-born (77%) 28 (23%) Deaths in neonatal units in Wales 2012 and 2013

Total Ysbyty Gwynedd, Bangor 000 Glan Clwyd Hospital 538 Wrexham Maelor Hospital 9413 West Wales General Hospital 011 Withybush General Hospital 101 Bronglais Hospital 000 Princess of Wales - Bridgend 011 Singleton Hospital University Hospital of Wales Prince Charles Hospital 0 0 Royal Glamorgan Hospital 213 Royal Gwent Hospital Nevill Hall Hospital Place of death of babies in 2012 and 2013

95% of all deaths occurred in 5 units

77% were inborn deaths

Overall, 1.9 /1000 live born babies died in NN Units in Wales

Age at death of 122 babies, 2012, 2013

Home2 NHH4 PCH4 PoW1 Royal Glam7 West Wales2 Withybush3 23 Deaths of babies born outside NICUs Unexpected births < 30 weeks10 At 30 and 31 wks2 > 32 weeks11

Summary and Conclusions This is the first All Wales neonatal death review Around 60 babies die in Neonatal units in Wales Most deaths (77%) deaths occur in the 3 NICUs of S Wales S Wales had 82.5% (80.5% births) and N Wales 17.5% (19.5% births) of deaths Most deaths (77%) were inborn babies 2.1% all babies admitted to neonatal units in Wales die

Summary and Conclusions (2) Survival rates of very premature babies in 2012 and 2013 have been: Two-thirds (66.9%) deaths were early neonatal deaths Extreme prematurity, Prematurity, Congenital abnormality and HIE accounted for 77% deaths Weekends and Bank Holidays did not have a greater representation of deaths or births of babies that died 23 wk24 wk25 wk26 wk27 wk 23.1%76%63.8%83.6%92.1%