Natasha Adams's daughter Honey was stillborn on May 16, 2007, aged 36 weeks and six days. Just two days previously Natasha had felt her daughter's last kicks. Desperate to understand the cause of Honey's death, Natasha and her husband Matthew agreed to a post-mortem examination.

“The post mortem was extremely helpful, but also very distressing,” says Natasha. “It took seven weeks for the final results to come through and they raised as many questions as they answered.” Nonetheless, what the post mortem revealed will hopefully have helped to prevent further tragedy.

The pathologist's report showed that Honey had died because the placenta was too small, with several clots and a 10per cent “abruption” - separation of the placenta from the uterus. She was also suffering from “asymmetric growth restriction”.

“This all meant that when I got pregnant again I underwent blood tests to look for clotting disorders,” explains Natasha. “The tests revealed that I have Factor V Leiden, a genetic condition which means I have a five-times greater risk of developing a blood clot than the general population.” Now 35 weeks pregnant Natasha is taking low-dose aspirin as well as receiving injections of Clexane to thin her blood and reduce the risk of complication. “If we hadn't had the post mortem we might not have been able to identify the risks accurately this time round.”

More than one in every 200 pregnancies in the UK - more than 3,600 a year - end in stillbirth, the death of a foetus at 24 weeks' gestation or beyond. The statistics are as astonishing as the event is tragic. Stillbirth is as common as sudden infant death syndrome (SIDS) in the UK and couples who experience stillbirth understandably want to know what caused their baby to die: whether they did something wrong, whether the doctor did something wrong and if it might happen again.

Because of lack of research into the subject, however, most parents never find out what the problem was. “More than 50 per cent of stillbirths are unexplained, with no specific cause identified,” says Erica Stewart, of Sands (the Stillbirth and Neonatal Death Society). “The impression is that because these deaths are unexplained, they are unavoidable. We disagree. If the causes of stillbirth were better understood the possibility of intervention and early delivery could save the lives of many of these babies.”

Later this month Sands prepares to launch its “Why 17?” campaign, based on the alarming statistic that 17 babies are the victims of stillbirth or neonatal death syndrome in the UK every day. “Most unexplained stillbirths occur in apparently low-risk pregnancies. And most of these occur at late gestations when a baby might reasonably survive and thrive if delivered early,” says Stewart. “Clearly these pregnancies are not low risk, only the risk has not been identified.”

Post mortems can contribute significantly to understanding cause of death. There is also the issue of future pregnancies. Having once experienced a stillbirth, a woman's risk of another increases between two and tenfold, depending on the reason for the first loss, if any can be found. A history of stillbirth also increases the risks of other complications in subsequent pregnancies, including pre-term delivery and low-birth-weight babies.

“Autopsy findings can help to define the risk of recurrence and modify the advice parents receive about future pregnancies,” explains Dr Stephen Gould, a pathologist at the John Radcliffe Hospital, Oxford. According to a recent report by The Confidential Enquiry into Maternal and Child Health (Cemach), new information was obtained after post mortem in 26 per cent of cases and cause of death was discovered in 19 per cent.

Yet in the UK less than 50 per cent of parents agree to a post mortem. The uptake of such procedures after a stillbirth has declined from 58 per cent in 1993 to 45 per cent in 2005.

Natasha Adams can understand why a significant proportion of parents opt not to have a post mortem. “Reading the post-mortem results is incredibly distressing. No parent should have to read how much each part of their child's brain weighs. I had very vivid nightmares.”

The organ-retention scandal at Alder Hey Hospital, Merseyside, has also helped to deter many parents. In 2001 the Redfern Report revealed that the pathologist Dick van Velzen had systematically ordered the “unethical and illegal stripping of every organ from every child who had had a post mortem” during his time at Alder Hey Hospital. The official inquiry also revealed that more than 104,000 organs, body parts and entire bodies of foetuses and stillborn babies were stored in 210 NHS facilities without the parents' knowledge or consent.

A new law on informed consent was brought in and there was a review of the coroners system but still the level of post-mortem uptake is only just beginning to recover. Moreover, the shortage of pathologists that also followed in the wake of Alder Hey has resulted in longer waiting times for post-mortem reports - a key factor in many couples' decision not to request the procedure.

Another factor in the low uptake of post mortems is poor communication with parents about what is involved. Catherine Evard's third child died on his due date in 2005 with a “true cord knot” (an entanglement of the foetus and umbilical cord) noted as the likely cause of death. “Initially I was advised that a post mortem would be unlikely to add any significant information,” says Catherine. “I was also told that due to shortages of pathologists the post mortem could take up to four months, during which time our son would have to be preserved in formalin. We could not tolerate the idea.”

However, Catherine and her husband Andrew were later told by a consultant that the knot might not have been the cause of death but without a post mortem it was impossible to be certain. It got worse. “A year after the event, by which time I was heavily pregnant again, I was told by a member of the ‘Birth Afterthoughts' service at our hospital that when a baby dies midwives are trained to look for a cause of death to relay to the parents to comfort them, even if it might not be the correct/only cause,” says Catherine. Not surprisingly this heightened her anxiety about the new pregnancy.

Dr Gould feels that Catherine's case illustrates the communication problem. “It is usually possible to generate a relatively rapid interim report to relay significant findings to the parents within days rather than weeks,” he explains. “However, good communication between the obstetrician requesting the post mortem and the pathologist is critical.”

Moreover, according to the latest Perinatal Mortality Report produced by Cemach, many clinicians are not fully aware how much information a post mortem can potentially supply. Latest figures on autopsy uptake after stillbirth or late foetal loss show that in 19 per cent of cases post mortems were not even requested by medical staff.

Recent data suggest that the lack of perinatal pathologists (and the resulting delays) remains the main reason for clinicians not requesting a post mortem. But it's something of a postcode lottery. “Turnaround time is an issue and there may be significant variation around the country,” says Dr Gould, citing the latest figures from within London showing that more than a third of post mortems were completed within five days of the birth and over 80 per cent had been performed by ten days postpartum. Nonetheless, even within London 3 per cent of parents still had to wait more than 21 days for the post mortem and in rural areas the waiting times may be longer still.

However, when the results of an post mortem are relayed to parents speedily after stillbirth or second-trimester miscarriage they can provide an enormous amount of comfort, as Sarah Gibson found after the death in utero of her baby during the second trimester.

“I had so many questions. I felt an overwhelming sense of failure and stupidity that I hadn't even realised my baby had died. I wanted to try to find out when death occurred and, crucially, if my baby was a boy or girl.”

Sarah was told she would have to wait weeks for the autopsy results but in fact the pathologist who performed the post mortem rang from the lab at 9.30pm four days later to tell Sarah that she had given birth to a son. She was able to give a confident assertion of time and cause of death and to reassure Sarah that there was nothing she could have done to prevent it and the likelihood of recurrence was slim.

“We will be eternally grateful to the pathologist, without whose help we wouldn't have been able to name our son or have known what happened to him,” says Sarah. “Prepared by the postmortem findings, I felt able to go to see him and say goodbye, which was incredibly important to me. If it hadn't been for the post mortem, we would have cremated Jack without knowing who he was.”

Perinatal pathology in the UK has been described by the Royal College of Paediatrics and Child Health as a service “in crisis”, with problems related to “pathologist recruitment and lack of public confidence after recent publicity over organ retention”. But if we are to understand more about the causes and prevention of stillbirth it's vital for this situation to be addressed. “One of the hardest things is not knowing why,” explains one member of Sands. “I am a logical person and I know I could move on if I could understand it. It has taken me so long to accept that we will not find an answer.”

Moreover, for many, such as Natasha Adams, opting for a post mortem may just help to prevent history repeating itself. Shortly after we interviewed Natasha, she gave birth to Kaysie Blossom, a healthy little girl who may just owe her life to her stillborn elder sister.

Help and support
Soon after your baby has died hospital staff will ask whether you would consider a post mortem. This investigation is not a legal requirement and cannot be undertaken without your consent.

If you find it hard to accept a full post mortem, it may be appropriate to have a partial investigation instead, such as tissue sampling, X-rays or specific organ examination.

If religious traditions dictate that you bury your baby as soon as possible, then hospital staff should be able to fast-track any investigation.

You must legally register your baby if he/she is stillborn after 24 weeks of pregnancy. The doctor or midwife who was at the birth or examined the body will issue a Medical Certificate of Stillbirth, which must be taken to the nearest office of the Registrar for Births, Marriages and Deaths.

If your baby was stillborn after 24 weeks of pregnancy or if your baby was born and died soon after birth (at any stage in your pregnancy), you are entitled to all your maternity rights and eight weeks' child benefit.

Sands helpline, 020-7436 5881; uk-sands.org/ Support/Important-practical-issues/

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