Sands, the stillbirth and neonatal death charity, fears that 1000s of bereaved parents are not taking up the opportunity to find out why their baby died.
Sands and the Royal College of Pathologists are urging the Government to ensure proper resourcing for the UK's perinatal pathology services.
One bereaved mother, Helen Thompson, said: "After my first son Jack was stillborn the word that raced through my mind was WHY? The post mortem results were an important part of the grieving process for me and my partner because they went some way to answering that question and reassuring us that this could be prevented from happening again. In my next pregnancy a specific care plan was put in place as a direct result of the post mortem results which meant my second son Ethan was kept safe and born alive."
6,500 babies are stillborn every year which equates to 17 babies who are stillborn or die shortly after birth every day in the UK. However the post-mortem rate, on a baby who is stillborn or dies in the first week of life, in the UK remains low at around 39%.
In many cases bereaved parents are put off consenting to a post-mortem because the process for seeking consent is bewildering. Some maternity units are using post-mortem consent forms that are up to 25 pages long. Parents whose baby died perhaps only hours earlier may refuse consent simply because they are overwhelmed and confused by the complexity and brutality of the questions they are asked. In 2008, 9% of parents whose baby was stillborn or died in the first week of life were not even offered a post-mortem.
There is a failure to recognise that post-mortems are crucial to understanding stillbirths. Research shows that many midwives and doctors are not trained about the value of post-mortems nor how to seek consent. Contemplating a post-mortem is already deeply distressing for parents and they are easily discouraged. But proper resourcing of perinatal pathology services is essential. 61% of perinatal deaths are not investigated by post-mortem which means that parents are missing out on information that could help to explain their baby's death and inform their care in a future pregnancy. A perinatal post-mortem provides additional important information or changes a diagnosis of the cause of a baby's death in 22% to 76% of cases. Yet the crucial information that post-mortems can provide is being lost, inhibiting much needed research into reducing future baby deaths.
Sands and the Royal College of Pathologists want to see a national post-mortem consent form specifically designed for perinatal loss and a structured training programme for medical and midwifery staff to improve their knowledge of perinatal post-mortem. They would also like to see a standardised, multidisciplinary perinatal reviews after all deaths.
Neal Long, Sands Chief Executive: "While the decision to consent to post-mortem is very much a personal one, high quality pathology and bereavement services are essential to ensure bereaved parents have informed choice, and are not needlessly discouraged from consenting. Every parent, after all, wants to know why their baby died. The information has huge and often long-lasting personal implications, not least in planning future pregnancies."
Professor Furness, President of the Royal College of Pathologists: "The death of a child is almost the worst thing that can happen to a parent. I say 'almost', because surely it makes it even worse not to know why. It is worst of all to have a second child die, knowing that the second death could have been prevented if only the first death had been investigated properly. Good pathology services aren't there to investigate death; they are there to save life."
A bereaved parent said: "Why does it take so long to get the post-mortem results? We had to wait 3 months to be told that no reason was found for our baby dying at 37.5 weeks. We weren't told what was happening or when our baby would be returned to us. The wait for the results was absolute torment. In the end the results were faxed through. The actual post-mortem was done about 5 days after he was born but the report wasn't written for two and a half months."
Another mum said: "Our son died in labour on his due date weighing 7lb 10oz, normal but with a tight cord knot. The registrar on duty told us a post-mortem would not achieve much as Cause Of Death was often not established, and he could see a visible cause ie. the cord.Later at home when we were still shell shocked and deciding what to do, a nurse phoned to say that due to the shortage of pathologists our son would need to go to London or Bristol and that there could be a delay of up to 6 months, while our son might need to be preserved in formalin. Needless to say we refused a post-mortem, and were then even more confused to learn much later from a consultant that the cord knot might not have been the cause."
Sands the stillbirth and neonatal death charity, was established by bereaved parents in 1978 and obtained charity status in 1981. They aim to support anyone affected by the death of a baby and work in partnership with health professionals to improve the quality of care and services offered to bereaved families. They promote research and changes in practice that could help to reduce the loss of babies' lives. Sands is a national organisation, with over 100 regional support groups across the UK.