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/
