New Sands-funded study shows that even with a full post mortem only 4 out of ten parents will get an answer to why their baby was stillborn. The findings provide evidence that we need to dedicate more research into finding new, novel and better ways of investigating how and why babies continue to die during pregnancy and close to birth.

• What is this study exactly?

Analysis by a Great Ormond Street Hospital (GOSH) led team looking at the effectiveness of different elements of the post mortem (also known as autopsy) process shows that, despite full standard investigation, in the majority of cases of stillbirth the cause remains unknown. The papers published by Ultrasound for Obstetrics and Gynaecology today, highlight the need for further research to understand why 1 in 219 births ends in stillbirth.

Researchers put anonymised information from over 1,000 post mortems of babies who died during pregnancy from 22 weeks gestation up to 43 weeks, into a specially constructed database. This allowed the researchers to look at the findings of the post mortems and see which of the tests and investigations were objectively the most helpful.

• What was the main finding of the study?

Researchers found that, for most babies, studying the mother’s placenta gave sufficient information, when taken together with information from the mother’s notes and looking at the baby externally to find the cause. Invasive post mortem techniques to remove normal-looking organs to examine tissue added further information to the cause of death in very few cases. Crucially, the study tells us that, with our current knowledge, a definite or highly likely cause of death can be found for only around 4 in 10 babies who die. So the study highlights how much more work there is to do to find the causes underlying stillbirth and late miscarriage.

• What does this study tell us about the placenta?

We know that problems affecting the placenta are responsible for a large proportion of deaths before birth. Yet very little is known about how it works and what can go wrong. And we can’t test how well the placenta is working till quite late on in pregnancy. In this study, around one-third of the stillborn babies had signs of placental abnormalities, but it was not clear for all the babies whether this actually led to the death.  If we are to unravel the tragedy of why babies die during pregnancy and achieve the government’s ambition to halve stillbirths by 2030, much more research is needed on the placenta. We need good-quality tests to check the placenta is working properly during pregnancy and to increase our understanding of how the placenta can malfunction.

• The study seems to show that growth restriction in babies isn’t as common as was thought.

During pregnancy, a baby’s growth will slow down (called ‘growth restriction’) if the placenta isn’t able to deliver enough nutrients and oxygen. This study provides new information about how pathologists should take into account the interval between the baby’s death in the womb and delivery, and also the time between delivery and post mortem.  Although it’s likely that the number of babies with growth restriction has been overestimated up till now, it’s important to remember that around one-quarter of stillborn babies are growth-restricted even when all the intervals that will lead to weight loss are taken into account.

Clea Harmer, Chief Executive at Sands said: “We urge the Royal College of Pathologists to consider these findings as they update their guidelines around perinatal pathology. It’s clear that routinely taking tissue from internal organs which haven’t been found to be abnormal during ultrasound scans in pregnancy, is rarely useful, and may also deter some parents from having a post mortem.

“This study should have a major impact on the way we design post mortem services for families. Given that fewer than half of all parents currently consent to full post mortem, we would like to see the development of less invasive post mortem techniques, such as MRI scanning techniques, to examine the baby’s organs. Studies already show these techniques are as good as full post mortem in 95% of stillbirth cases. But they are only available at a handful of centres, and are not routinely offered to parents across the UK. We’d like every bereaved parent to have access to them.”

Notes to editors

For further information or to be put in touch with families affected by stillbirth, please contact the Sands press office on 0203 598 1959 or communications@uk-sands.org .

About Sands

Sands is the leading stillbirth and neonatal death charity in the UK. They work nationally to reduce baby deaths through promoting better maternity care and funding research. They have a programme of training and a wide range of resources designed to support professionals to improve the bereavement care they provide following the death of a baby, and they provide a comprehensive bereavement support service both nationally through their helpline and locally through around 100 regional support groups based across the UK. Further information can be found at www.uk-sands.org.

About Great Ormond Street Hospital for Children NHS Foundation Trust

Great Ormond Street Hospital is one of the world’s leading children’s hospitals with the broadest range of dedicated, children’s healthcare specialists under one roof in the UK. The hospital’s pioneering research and treatment gives hope to children from across the UK with the rarest, most complex and often life-threatening conditions. Our patients and families are central to everything we do – from the moment they come through the door and for as long as they need us.

Great Ormond Street Hospital, with its academic partner, the UCL GOS Institute of Child Health, has a world leading research portfolio. Its programme is made possible through many different funding sources, such as government and charitable funding, including from Great Ormond Street Hospital Children’s Charity. You can help us to provide world class care for our patients and families. For more information visit www.gosh.org

About the Journal

Ultrasound in Obstetrics and Gynecology (UOG), published by Wiley, is the official journal of the  International Society of Ultrasound in Obstetrics and Gynecology (ISUOG) and is recognised as the leading peer-reviewed journal on imaging within the field of obstetrics and gynecology, publishing important research from all parts of the world. ISUOG is a charity and membership association encouraging exceptional research and education in ultrasound and related imaging within the field of obstetrics and gynecology. ISUOG, founded in 1991, has over 13300 members in 128 countries,  and is the leading international society representing professionals in ultrasound for obstetrics and gynecology.