Stillbirth: Giving Parents an Explanation | Action Medical Research | Children's Charity

Stillbirth: giving parents an explanation for this tragic loss of life

First published on 22 November 2011

Updated on 7 September 2015

What did the project achieve?

Although the number of stillbirths is falling in the UK, it’s still estimated that over 3,200 babies are stillborn each year, bringing untold heartache to bereaved parents.1 Many other babies die soon after birth.1 Parents often want to know why their baby has lost their life, but many such deaths remain unexplained.

“In this project, we worked with seven extended families who had each experienced the unexplained death of more than one baby before, during or soon after birth,” says Dr Lucy Raymond of the University of Cambridge.

“We discovered genetic changes that explain why four of the families we worked with have repeatedly lost babies,” says Dr Raymond. “Family members who want to can now find out if they carry those genetic changes, and genetic testing is available during pregnancy if requested.

The team also identified a new gene, called SETD5, which is linked to severe learning disabilities and sometimes congenital heart disease. This important discovery has given parents of children who carry this gene a better understanding of their child’s condition.

“We had planned a much larger investigation into the possible genetic causes of stillbirth, but we didn’t go ahead with that work because we discovered that another group had just completed such a study to a very high standard,” continues Dr Raymond. “All unused funds were returned to Action Medical Research to support other projects.”


1. National Perinatal Epidemiology Unit. Perinatal Mortality Surveillance Report 2013. Website accessed 29 July 2015.

This research was completed on 30 April 2014

Around 4,000 babies are stillborn each year in the UK and many others die soon after birth.1 Losing a baby in such tragic circumstances is deeply upsetting – the grief can be overwhelming. Frequently, it is not possible to work out exactly why the baby died, leaving great uncertainty for couples embarking on a subsequent pregnancy. Dr Lucy Raymond, from the University of Cambridge, is looking for genetic causes of stillbirth, to give more parents an explanation for their sad loss.

What is the problem and who does it affect?

Sadly, around one in every 200 babies is stillborn* in the UK and one in every 300 babies born alive dies within just four weeks of birth.1

“The death of a baby late in pregnancy or soon after birth is profoundly shocking, acutely painful and grievous,” explains Dr Lucy Raymond. “Parents often feel numb and bewildered – we do not expect bereavement to be the outcome of pregnancy. Many want to know why their baby has died, to help them come to terms with their loss and to find out whether it might happen again if they try for another baby.”

All too often though, the cause of death cannot be identified adequately. “Current investigations include performing a post-mortem examination, checking for infection, assessing the placenta and some screening for genetic problems,” explains Dr Raymond. “The genetic testing offered after stillbirth is limited though when compared with that available in many other situations.”

Unfortunately, one in four stillbirths remains unexplained, leaving parents with many unanswered questions.2 We urgently need better ways to find out why these babies are losing their lives.

*If a baby is born dead after 24 weeks of pregnancy, he or she is said to be stillborn.

What is the project trying to achieve?

Dr Raymond suspects that some babies who are stillborn, or who die soon after birth, have genetic abnormalities that have not been identified yet. She is investigating this by studying the genetic codes of six families who have lost several babies in this way and another 200 babies who were stillborn or who died within four weeks of birth.

“We aim to find out whether better genetic testing after the death of a baby might improve our ability to explain why the baby died,” explains Dr Raymond. “This knowledge could be invaluable. It could help bereaved parents to make sense of their tragic loss, reach closure and readjust to life after their baby’s death. It could also be beneficial if couples want to know whether they are at risk of losing another baby in the future. Anxiety levels surrounding subsequent pregnancies can be especially high if a baby’s death remains unexplained.”

What are the researchers’ credentials?

Dr Raymond’s research group has successfully identified 12 genes that cause severe intellectual disability in children, along with a further four genes that are likely to cause such disability. They are international leaders in this area of research and are perfectly placed to focus their skills on this new investigation. 

Project LeaderDr F L Raymond
LocationDepartment of Medical Genetics, Cambridge Institute for Medical Research, Addenbrookes Hospital, University of Cambridge
Duration2 years
Grant awarded22 August 2011
Start date1 May 2012
End date30 April 2014
Grant amount£165,529.00
Grant codeSP4640, GN1825

We do not provide medical advice. If you would like more information about a condition or would like to talk to someone about your health, contact NHS Choices or speak to your GP. Please see our useful links page for some links to health information, organisations we are working with and other useful organisations. We hope you will find these useful. We are not responsible for the content of any of these sites.


  1. Confidential enquiry into maternal and child health (CEMACH). Perinatal mortality 2007. Published June 2009. (website accessed October 2011).
  2. Sands. Media Centre. Key fact no 6 (website accessed November 2011)
Help us spread the word