We fear that overstretched perinatal pathology services in the UK may mean thousands of bereaved parents are not taking up the opportunity to find out why their baby died. Together with the Royal College of Pathologists we are urging the Government to ensure proper resourcing for the UK’s perinatal pathology services. The appeal is part of National Pathology Week, 1 – 7 November, which this year is focusing on the role of pathology in the health of mothers and babies.
“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.” Helen Thompson, bereaved mother.
17 babies are stillborn or die shortly after birth every day in the UK. That’s 6,500 babies dying every year. However the perinatal post-mortem (post-mortem on a baby who is stillborn or dies in the first week of life) rate in the UK remains low at around 39%, with little effort being made to improve up-take since the organ retention scandals in the late 1990s.
There are several reasons why post-mortem rates on babies are so low:
- 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 (ref CEMACE report 2008). There is a failure to recognise the crucial contribution that post-mortems make 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 if staff are ill prepared or lack confidence in the process.
- The length and complexity of the consent process can also deter staff from even raising the possibility.
- Despite the dedication of perinatal pathology staff the fact is that the service is underfunded and as a result understaffed with too few pathologists and mortuary staff, and variation around the country in the quality of service on offer. A significant increase in the number of specialist perinatal pathologists is required to cope with even current low rates of post-mortem up-take, let alone the number needed were perinatal post-mortem up-take to increase.
- These shortages mean there can be unacceptable delays for parents in having their baby’s body returned to them (in some cases up to six weeks) and longer delays for post-mortem reports to be returned. Babies’ bodies are sometimes transported hundreds of miles to specialist pathology centres, which causes parents great anxiety. Parents are discouraged from consenting to post-mortem if they don’t trust that the system will care for their baby.
- Funding structures for perinatal pathology services are unsatisfactory in most areas with a failure to manage, fund and prioritise perinatal post-mortem services. Some maternity units are reluctant to refer all babies for post-mortem because of worries about cost.
Why is proper resourcing of perinatal pathology services essential?
- 61% of perinatal deaths are not investigated by post-mortem. 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 cases¹ . Yet the crucial information that post-mortems can provide is being lost, inhibiting much needed research into reducing future baby deaths.
What does Sands and the Royal College of Pathologists want to see?
- A national post-mortem consent form specifically designed for perinatal loss.
- A structured training programme for medical and midwifery staff to improve their knowledge of perinatal post-mortem and guide good practice in seeking consent and delivering high quality bereavement care.
- A national care pathway for perinatal death to help to improve and standardise practice.
- Minimum standards of perinatal pathology service should be defined.
- Funding structures reviewed and managed to ensure perinatal pathology services are adequately resourced in every region.
- Standardised, multidisciplinary perinatal reviews after all deaths.
Neal Long, Sands Chief Executive: “Despite the dedication of perinatal pathology staff there is significant variation in the quality of care after a baby had died throughout the UK, particularly the availability of perinatal pathology services and the lack of standardisation in the post-mortem consent form."
“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.”
Dr Phil Cox, Consultant Perinatal Pathologist at the Birmingham Women’s Hospital: “It should be the right of every parent who loses a baby or child to be given the opportunity to make an informed decision about a post-mortem as this is their best chance of getting an explanation of their sad loss. If they choose to have a post-mortem, there should be an easily-accessible, expert perinatal pathology service available, that can undertake the examination in a timely fashion and provide a detailed report in an acceptable time. Even in the West Midlands, where we are relatively well-funded, compared to some other parts of the country, the service is constantly very stretched, despite the currently low consent rate. Improvements in training of clinical and bereavement staff in discussing post-mortem with families are showing signs of increasing rates of consent in our Region. This is very much welcomed, but is likely to add to the pressure on perinatal pathology services.”
Quotes from parents:
“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.” Bereaved Mum
“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.” Bereaved Mum