The committee received evidence from many parents and family members who
described the devastating emotional impact of being told that their baby would
The pain and grief may last a lifetime, compounded by inadequate
information about the risks, the personal and financial implications, and the
social stigma that continues to keep the tragedy of stillbirth in the shadows.
This chapter discusses the need for better stillbirth education of
families, clinicians and other health professionals, hospitals, workplaces and
the community generally.
A hidden tragedy
Mr Gavin Youngman, Director, Stillbirth Foundation Australia, described
the contrast between public perceptions of pregnancy and the reality of those
who experience stillbirth.
...it's not discussed, so I don't understand how we think we
can go from having that lack of conversation even in those intimate circles to
all of a sudden—when you're told, you feel completely alone.
Several witnesses described how societal attitudes to death underpin the
silence and stigma surrounding stillbirth:
We're not very good at talking about deaths in general in
Australia and so the taboo around speaking about the death of a baby is a whole
other element. Babies dying is somehow treated differently in all of our
society including that coroners don't get to look in on that because they're
not really seen as real people yet.
Our society finds it very difficult to talk about death and
finds it very difficult to talk about intense emotion, and the death of a
little baby or a child is such a painful and confronting area for people.
When I've spoken to friends of ours who are obstetricians and
I've asked, 'Are you using the Still Aware stuff?' they have said, 'Well, you
know, it doesn't happen that often.' That's not the answer we want to hear. How
we get past that, how we deal with bereavement, how we deal with grief, how we
deal with asking for help and how we deal with taking help on board is a stigma
in Australia, and I think we need to look beyond it.
One witness described how her stillbirth was met with silence and
Instead of feeling included, I felt a strong sense of being
kept in the dark at arm's length. How can I trust a patriarchal healthcare system
with a future pregnancy when it appears to prioritise silence over transparent
Ms Natasha Donnolley, a bereaved parent, researcher and advocate, argued
that the 'paternalistic approach' to antenatal care contributes to a lack of
awareness of stillbirth amongst women, and to feelings of shame and guilt amongst
those who experience it. She urged clinicians and health professionals to be
more open about stillbirth, citing the example of airline safety briefings that
are presented to passengers on every flight, even though the risk of a crash
occurring is extremely low.
Most passengers don't run off the plane screaming in fear
that because it was discussed, it's going to happen. But we assume that women
will do that if stillbirth is discussed. We desperately need a public awareness
campaign and improvements to antenatal education to address this.
One submitter expressed the importance of sharing the stories of
families who have experienced stillbirth.
Learning how to be a mother to a child who never got to live
is a horrible path to walk, but our children being acknowledged, and us being
heard in the hope to help to make a change in their name and potentially save
other babies and break the silence surrounding stillbirth is a small...piece of
Dr Michael Gannon drew attention to the irony that women in developing
countries with no organised maternity care are far more aware of the risk that
they or their baby could die, whereas Australians tend to take their maternity
care system for granted so that stillbirth or neonatal death is 'at least out
of sight and potentially out of mind'.
Public awareness campaigns
Public awareness campaigns such as Red Nose Day have been highly
successful in raising public awareness, helping to reduce Sudden Infant Death
Syndrome (SIDS) deaths by 85 per cent in Australia.
However, even though stillbirth is statistically more common than SIDS, it is
rarely discussed in public contexts.
Associate Professor Camille Raynes-Greenow, a public health specialist
at the University of Sydney, cautioned that, whilst there is merit in a public
awareness campaign, the emphasis should be on reducing the risk and not just
providing information. She added that such a campaign should be evidence-based,
inclusive, tailored to suit specific settings, and aimed at women who are
likely to be at the greatest risk of stillbirth.
Nevertheless, as one bereaved parent noted, there is a widely-held
perception that stillbirth only occurs in high-risk pregnancies, indicating
that stillbirth education should be aimed at all women, regardless of risk.
Our naive understanding of stillbirth was that it was
something that only happened in high-risk pregnancies, and that these families
knew that there was a risk for their baby. We had researched many aspects of
pregnancy and birth, but we had not researched stillbirth because we believed
it was not a risk for us. As we have now learnt, many normal, healthy
pregnancies like ours also end in stillbirth.
Contrary to popular thinking, greater awareness is likely to reduce the
incidence of stillbirth rather than create undue stress.
There is a feeling of not wanting to cause alarm or ‘scare
monger’ women who are doing everything they can to bring a healthy child into
the world. There is a feeling of not wanting to put too much responsibility on
mothers since many cases are unavoidable. There is a fear of causing too much
anxiety. My response to this is the example of SIDS. A terrifying thought for
any new parent, however we are educated thoroughly and properly on the risk
factors (from waiting room posters, to Parent Ed classes to midwife visits).
The education on SIDS has not caused mass hysteria or anxiety, it has reduced
Several witnesses and submitters called for a government-funded public
campaign aimed at pregnant women so that they can be better educated about the
risk of stillbirth and techniques for identifying and monitoring potential
issues. Suggestions included:
- advice that pregnant women know their baby's movements, sleep on
their side, trust their instincts and expect to be listened to when they have
the distribution of pamphlets about stillbirth at antenatal
appointments and classes such as the information provided by the organisation
Still Aware, using clear, non-technical language in information and guidelines
and avoiding medical terms such as 'fetal demise' and acronyms that most people
will not understand; and
information about mobile apps that enable pregnant mothers to
monitor their babies' movements similar to the Australian government’s ‘Quit
for You—Quit for
Two’ App released in 2013.
Still Aware highlighted the importance of using clear terminology and
language in educational materials, rather than acronyms and technical language
which serve to perpetuate the lack of awareness and discussion about
Mr Terry Slevin, Chief Executive Officer of the Public Health
Association of Australia, drew on his extensive experience to outline the
elements of conducting an effective national public health campaign but noted
that, whilst Australia is internationally recognised for its public health
campaigns, the financial investment in these programs is generally inadequate
to meet the costs.
Mr Slevin advised that such a campaign should be not only properly
researched and implemented, but also appropriately funded over the longer term,
in order to have a societal impact:
...if you think about any of those campaigns, whether in the
skin cancer area, with Slip! Slop! Slap! or in HIV and the famous Grim Reaper
campaign, those got attention to the issue; but there's been an awful lot of
hard graft that's followed those things, and it's the hard graft that makes the
Mr Slevin stressed that a public awareness campaign focusing on stillbirth
is more likely to be effective if it not only identifies the problem but also
offers the solution. It should also be delivered through different channels so
that it will target particular audiences.
When it comes to issues of stillbirth, it is a really
powerful and highly emotive issue. I think that with the right demographic it
has the impact of having an emotional, and therefore likely, behavioural
response that makes people more prepared to take up the practical advice you
provide as to how they tackle obesity, or smoking cessation, or alcohol
consumption or whatever it might be. So the issue gets embedded into the call
for influencing people's behaviour in a healthy way.
Education for families
Recent Australian and international research has shown that many
stillbirths are preventable and that the number of deaths can be reduced
through greater awareness and improved quality of care.
Antenatal education is provided in a variety of ways and by a range of
organisations and individuals, often on a fee-paying basis, and there is
currently no standardised curriculum or content guidelines meaning that such
education is generally not accessible to those without the means to pay.
Ms Victoria Bowring, Chief Executive Officer, Stillbirth Foundation Australia,
described how the silence surrounding stillbirth during pregnancy poses
challenges for educating families.
I would say it's probably the biggest hurdle that we face at
the moment in regard to the issue. In the time that I've been with the Stillbirth
Foundation, the very first thing that nine out of 10 families that come to us
ask is, 'Why wasn't I ever told this was a possibility?' As was referred to
before, we are told not to eat soft cheese and all of these different things,
yet the issues arising from those particular behaviours are far less common
than stillbirth. One in every 135 pregnancies in Australia will end in
stillbirth. It's not spoken about. For nine out of 10 families to not even know
that that is a possibility is astounding.
Ms Bowring estimated that the rate of stillbirth in Australia could be
reduced by one-third if two of the biggest risk factors were common knowledge
amongst pregnant women, clinicians and other health professionals.
Research indicates that, if two of the stillbirth risk
factors that we are currently aware of—decreased fetal movement and maternal
sleep position—were common knowledge among the pregnant population and health
clinicians there is potential to reduce the number of stillbirths by up to 30
per cent...The sleep position, particularly, which we're working on at the moment
through a public health campaign, has the potential to reduce that risk by up
to 10 per cent, and just in Australia alone that's 200 babies a year.
Dr Gannon, who reflected on his extensive experience in the area of
stillbirth prevention, noted that he tended to avoid directly mentioning
stillbirth to his patients, unless the discussion was 'remote from the delivery
I will usually talk to them at 36 weeks about the increased
frequency of visits, about the importance of reporting decreased fetal
movements and the reasons why I will want them to give permission for them to
be scheduled for induction of labour not long after 40 completed weeks or
sometimes before 40 weeks. I will refer in bleak terms to it being safer for
the baby. So even someone like myself who understands the issue and possibly
should call [it] out is reluctant to use the word. There remains a taboo about
Similarly Professor Steve Robson, President, Royal Australian and New Zealand
College of Obstetricians and Gynaecologists (RANZCOG), found it
difficult to discuss the issue of stillbirth with his patients.
There's an increasing recognition that perhaps people have
been afraid to tell pregnant people certain things, and stillbirth would be key
among them. Even I don't like directly bringing it up. If I'm seeing somebody
and we're talking about things and they talk about movements or I do a scan,
it's very difficult to say, 'I'm worried that your baby will die.' I often will
phrase it: 'I'm anxious here. I would do something. I wouldn't want something
to go wrong.' It's very difficult to say that.
Recent international research has shown the value of preconception care
in improving pregnancy outcomes. Professor Craig Pennell, Senior Researcher,
Hunter Medical Research Institute (HMRI) noted that the outcomes of a pregnancy
are often good if conditions associated with adverse outcomes, such as low
folate, Zinc, vitamin D and iron, are addressed before pregnancy. In the Hunter
region, for example, the HMRI team meets each week with every family who has experienced
a preterm birth or a stillbirth, and offers them an evaluation and assistance
with planning for the future.
Also there is an offer available for preconception care for
anyone who wants to have it in pregnancy through the referral system through
GPs. That partly encourages GPs to do it, because they can do a lot of it, but
for people with more complex issues they need to be referred in.
Professor Robson also observed that every hospital has a different
antenatal education program, and those that do operate do not necessarily
provide for culturally and linguistically diverse families.
Several witnesses and submitters drew attention to the success of the
Scottish education program, Maternity Care Quality Improvement Collaborative,
which has created a 'cultural change' in Scotland's medical system around the
issue of stillbirth.
Scotland had one of the highest rates of stillbirth in Europe. In 2011 the
Scottish government invested $7.1 million over four years to implement a
package that has seen a 22 per cent reduction in stillbirths in a population of
60 000 births.
Ms Danielle Pollock, Stillbirth Researcher and Bereaved Parent
representative, Global Stillbirth Advocacy Network, summarised the reason for
It actually seems so simple when you break it down. It was
just educating pregnant women. It was not being afraid to mention the word
'stillbirth'. They got rid of the anxiety myth, which has absolutely no
evidence for it.
The initiative was based on the successful program implemented in the
Netherlands in 2001, which resulted in a 55 per cent reduction in stillbirths
over 14 years. It is based on the concept that, whilst the risks of
stillbirth are well known, 70 per cent of mothers of stillborn babies have no
significant medical condition. The stillbirth prevention package includes five
- a tailored patient education campaign with clear messaging that
stillbirth can happen to anyone and some are preventable;
implementation of a new package to reduce smoking in pregnancy
across all maternity units in Scotland;
raise awareness for reduced fetal movement;
risk assessment and fetal surveillance for fetal growth
restriction (FGR); and
implementing a new Perinatal Mortality Review Tool.
Red Nose noted that it has been offered the new Perinatal Mortality
Review Tool, developed for the Scottish Program and recently adopted by the
United Kingdom (UK), for evaluation in a clinical setting as part of the Red
Nose Stillbirth Prevention Program.
Red Nose estimated that the cost of rolling out the Scottish package in
Australia would cost $37 million over four years ($9.3 million annually),
resulting in 1218 fewer stillbirths during implementation, and 500 babies'
lives saved per year thereafter.
Education for clinicians and other health professionals
Ms Donnolley noted that clinicians are required to stay up-to-date on a
wide range of issues, and may have limited time to discuss research on
stillbirth with pregnant women during their appointments.
However, while FGR is widely understood to be a major risk factor for
stillbirth, there is still a need for clinicians to educate women in this area.
Most pregnant women can recite the foods they should avoid
during pregnancy and that they should avoid alcohol but most women have no idea
that their baby’s movements shouldn’t slow down at the end of pregnancy or that
they should avoid sleeping on their back. Most women have no idea that their
baby is far more likely to be stillborn than to die of SIDS, but most know to
sleep their baby on their backs with no head covering or toys in the bed.
Several witnesses drew attention to the need for better education and
training of sonographers to enable them to identify potential health issues
during routine scans in pregnancy. Some reported discrepancies in the way that
test results were reported by sonographers and clinicians.
Mrs Doshni Stewart, for example, received conflicting information about
her baby's measurements from the sonographer and the obstetrician. She also
noted that medical staff involved in her care seemed unaware of research from
other countries that revealed how people from certain ethnic backgrounds had a
shorter gestation period, even though the information was readily available on
Mrs Tiffany McIntosh experienced severe itchiness at 32 weeks, and was
told that it was hormonal. After losing her baby, she discovered an online fact
sheet about cholestasis of pregnancy identifying what action should have been
taken. However, she claimed that the clinicians involved in her care were
unaware of the diagnostic tests that were required at the time.
No medical professionals around me spoke about the fact that
your baby could die before it's born. And even in the birthing class I attended
they tell you to look out for symptoms like swelling, high blood pressure,
reduced movement—nothing about itching, but furthermore, nothing about the fact
that some of these symptoms can lead to stillbirth. So I think we still have a
lot of people who haven't started a family yet that are simply unaware that
that could happen to them, and when they're told about these symptoms in
pregnancy have no idea of exactly what the adverse outcome can be.
One witness suggested that this problem could be addressed by
establishing an online stillbirth research and education 'clearinghouse',
bringing together domestic and international research in an accessible way for
clinicians, health professionals and the general public.
The National Health and Medical Research Council (NHMRC) noted that the
Centre of Research Excellence in Stillbirth (Stillbirth CRE) has been
developing a Fetal Growth Restriction Program, a clinical face-to-face training
program for health professionals designed to improve detection and management
of women at risk.
The HMRI noted that Professor Craig Pennell is currently developing a
pre-conception program in Newcastle for every pregnant woman, or a woman planning
to have a baby. The program aims to reduce child mortality by improving the
health of women before and during pregnancy.
Witnesses who had experienced the trauma of stillbirth described
responses from clinicians and other health professionals ranging from
empathetic to unhelpful, and highlighted the need for better education about
stillbirth amongst those who care for the bereaved parents and their families.
Ms Deborah De Wilde, Volunteer, Stillbirth Foundation Australia, stated
that there are significant issues around the care of bereaved parents that need
to be addressed, including the bedside manner and language used by clinicians
and other health professionals at a time when bereaved parents are in a state
of profound shock and disbelief.
We need to throw a ring of care and support around these
people. We need to provide them with service providers who have a high level of
communication. We need them to feel that we can give them, as we should, all the
time in the world. We need to have people raise those important issues about
seeing their baby, spending time with the baby, what delivering a baby who has
died before it's birth might be like, how that little baby is going to feel in
your arm, a parameter for how long you might be with your baby and who else
might be invited into what, for me, becomes a sacred site.
One witness noted an obvious lack of empathy and knowledge of basic
administrative processes relating to stillbirth amongst some of the medical
staff she encountered, both in hospital and at home following the stillbirth.
Another highlighted the long-term impact of stillbirth when appropriate
counselling is not provided:
In 14 hours from learning our baby was dead, we were never
offered counselling. The midwife tried her best taking ink prints of Nina’s
hands and feet. She took photographs the best she could. But we needed more and
should have been provided with much more. A grief counsellor should have
supported us throughout those 14 hours. The guilt I carry with me for not
picking her up could have been eased with a grief counsellor.
The review undertaken into the unusually high number of perinatal deaths
at the Bacchus Marsh Hospital in 2013−14
found that death may have been preventable in seven of the 11 cases. The
Wallace Report found that the workforce was inadequately skilled, and
recommendations included improved staff education.
One witness, whose daughter was stillborn during a homebirth, expressed
concern that homebirth midwives downplay the risks of stillbirth, and that
parents do not have sufficient information about the stillbirth risks
associated with homebirth.
Homebirth midwives need to be under stricter onus to
correctly communicate the risks of stillbirth to their clients, as well as the
limitations of their practice in the home. It is an absolute must, to
counter-act the incredible amount of misinformation that is propagated by
Stillbirth CRE noted the need for more resources to support clinicians
and other health professionals in caring for bereaved parents:
Providing care after stillbirth is a challenging area of
practice for many health care professionals. Education, training, resources and
support are critical enablers and organisational support and financial
commitment are both required to create the conditions and structures for the
implementation, monitoring and evaluation of best practice care. Training for
clinicians in the care of women and families after stillbirth is urgently
Stillbirth CRE drew attention to the Improving Perinatal Mortality
Review and Outcomes Via Education (IMPROVE) program developed by the Perinatal
Society of Australia and New Zealand Stillbirth and Neonatal Death Alliance (PSANZ-SANDA)
to provide clinicians and health professionals with appropriate training in
managing a stillbirth or neonatal death
including investigations, counselling for autopsy, and examining the
Professor Vicki Flenady, Director of Stillbirth CRE, noted that the
IMPROVE program has been well received by clinicians and midwives. The training
comprises a half-day workshop conducted in hospitals, community centres or
conference venues, and includes all aspects of care, including how to have a
conversation about stillbirth. However, she noted that there is no funding provided
for this training, and that the educators involved often provide it in their
The only state that's actually putting in money for hospitals
to avail themselves of this course is Queensland at the moment. We've had
recurrent funding in Queensland for a few years to offset the cost for
clinicians to attend. It's quite an expensive workshop, really, for hospitals
with limited resources, but that's something we really need upscaled.
Dr Glenn Gardener, Director of Maternal Fetal Medicine, Mater Health
endorsed the IMPROVE program, noting that it has been successful in increasing confidence and knowledge
of participants and is being made available internationally.
Dr Adrienne Gordon, Neonatal and Perinatal Medicine Specialist, Royal
Australasian College of Physicians (RACP) proposed
that the program could be expanded to provide practical guidance on
communicating with bereaved families.
Clinical practice guidelines
The committee noted that there are currently multiple guidelines to
guide clinical practice in relation to pregnancy, stillbirth and neonatal
death. None of these guidelines are mandated, so their application is ad hoc
and there is little information on how to implement them.
As one witness observed: 'some do it extremely well; others don't'.
As noted in Chapter 4, PSANZ-SANDA updated its Clinical Practice
Guideline for Care Around Stillbirth and Neonatal Death in March 2018. It
best practice across Australia and New Zealand around the time of a perinatal
death to improve maternity and newborn care for bereaved parents and families
and to improve the quality of data on causes of stillbirth and neonatal deaths
through appropriate investigation, audit and classification.
The PSANZ Guideline provides information for effective monitoring to
reduce perinatal deaths; increased understanding of causes to further reduce
perinatal deaths; better care and outcomes in future pregnancies; and improved
psychosocial outcome for parents and families. There are also specific guidelines
relating to aspects of antenatal care, including decreased fetal movement.
Professor David Ellwood, Co-Director of the Stillbirth CRE noted that,
whilst there is 'a plethora of guidelines about everything', there are no
nationally consistent guidelines.
Guidelines for antenatal care
In 2005 the Department of Health developed Clinical Practice
Guidelines: Pregnancy Care, a series of national evidence-based antenatal
care guidelines as one of four projects approved by the Australian Health
Ministers Conference and Community and Disability Services Ministers
Conference. The guidelines, updated in 2018, cover a range of topics including
stillbirth, and are intended to assist health professionals who provide
antenatal care to healthy pregnant women.
Professor Susan Walker, Head, Department of Obstetrics and Gynaecology
and Chair, Women's and Newborn Health Network, Melbourne Academic Centre for
Health, The University of Melbourne, reported on the success of live-streaming
education events to 200 rural and remote sites to enable maternity care
providers to be kept informed and connected with current practices and
knowledge in relation to stillbirth risk and prevention.
They are the ones delivering prepregnancy care and, indeed,
they're delivering much of the first half of antenatal care, as many of our
public hospitals do not book patients until perhaps 16 to 18 weeks.
Some state jurisdictions have also produced clinical guidelines.
Queensland Health, for example, has a guideline for 'Stillbirth care' as part
of its Maternity and Neonatal Clinical Guidelines.
Guidelines for bereavement care
Stillbirth CRE noted that Respectful and Supportive Perinatal
Bereavement Care Guidelines form part of the larger Clinical Practice
Guideline for Care Around Stillbirth and Neonatal Death, and are designed
to improve the quality of bereavement care for parents who experience
stillbirth or neonatal death.
Stillbirth CRE also drew attention to the 'Sands Australian Principles
of Bereavement Care', and recommended that all major maternity hospitals should
establish specialist bereavement care, with outreach services to smaller and
Support for health professionals
Several witnesses and submitters discussed the emotional impact that a
stillbirth can have on the clinicians and other health professionals involved,
noting that there is a need for strategies to care for health professionals and,
where necessary, to guide them in handling their grief in the presence of the
Professor Pennell noted that staff might take leave, or occasionally
even leave the profession, after having been involved in an unexpected
stillbirth, and reflected on how he had developed his own ways of dealing with
If I feel like crying, I cry. I have no shame about giving
the husbands hugs, sitting there holding their hand while their wife's pushing
out their dead baby. But the implications are huge, and to do it repeatedly and
see it repeatedly and not to see it change is frustrating, and it drives me
into doing what we're doing.
Professor Caroline Homer, Distinguished Professor of Midwifery at the
Centre for Midwifery, Child and Family Health, University of Technology Sydney,
noted the stresses for those who care for a woman giving birth to a stillborn
baby, and recommended education programs that help to build resilience in those
One obstetrician told me about scars on his soul. He says,
'Every time something goes wrong, there's like a little scar on my soul. But I
have to pick myself up and do it again tomorrow.' But how many scars can you do
over time and still provide exemplary care? So I don't think we look after
people well enough.
I know that as a midwife, standing outside a door going into
a room where there is a woman who is going to give birth to a stillborn baby,
you have to take a big breath and think, 'I've got to get this right.' That's
quite stressful. You can't rewind it, really. So I think there is silence in
the community and also in the professions, and we need to talk about it more,
both at an undergraduate level and at the clinical coalface.
Autopsies and other port-mortem investigations
For bereaved parents, making a decision about whether to allow an
autopsy following stillbirth is a harrowing and unexpected experience. A number
of submissions pointed to the difficulties that face parents, families and
healthcare providers in approaching the subject of autopsy.
Whilst information brochures are available that may help bereaved
families decide whether or not to consent to an autopsy, many families will
fear making such a decision or are unwilling to proceed with an autopsy for
religious, cultural or other reasons. In one instance, the bereaved parents
decided against an autopsy of their baby daughter because they were told it
would 'rip her little body apart and probably never find out why'.
In some cases, a baby may need to be transferred to another hospital for the
autopsy to be conducted, adding to the stress of the bereaved parents.
The bereaved parents may also be confronted with the cost of an autopsy
or other post-mortem investigation costs associated with the autopsy process,
including transporting the baby to the autopsy, travel and accommodation for
the parents, and the cost of the autopsy itself (see Chapter 3 for further
discussion of the financial implications of stillbirth for families).
Stillbirth CRE recommended that all parents should have access to a
high-quality autopsy service without charge.
The autopsy process itself can also add to the uncertainty and stress of
bereaved parents, particularly where parents are given incomplete information.
Our experience with the autopsy process was also a nightmare.
We continually had to chase up the progress and status of the results.
Eventually a meeting was scheduled with one of the doctors at the hospital we
delivered Evelyn (we had not had any interaction or involvement with this
particular doctor until the meeting). The meeting was brief and brutal. The
doctor basically said that there was no clear cause of death and then went on
to say, “better luck next time”. I was an emotional mess—it was such a cold, quick and heartless
delivery of results and I was left full of questions and fears for the future...A
few weeks later we were left even more confused when we received a call from
ANOTHER hospital to say our autopsy results were ready and they would like to
schedule a meeting. Apparently the first meeting we had attended, and the
results delivered were based on an incomplete report.
We had to go back to the hospital when the autopsy results
were completed. It was horrible to sit there with my husband and the ob and a
nurse while they talked to us about it. To be honest I wasn’t expecting any
answers. I think the results took about 7 weeks. I had googled hydrops a lot
and there were a lot of causes. I was expecting them to say that it was my
fault and I could have done something better. That was how I felt. I felt like
it was my fault for whatever reason there was, it didn’t matter what had
happened but it was my fault. They told us that they found a valve in the heart
that hadn’t developed properly so the blood wasn’t going back through, it was
pooling in his heart. This is what caused the hydrops and that i[s] why he
died. As much as I try, I can’t remember the medical term, I think one day I
will ask for records so I can find out what it was called. I did call the
hospital to ask but it was really hard to get the information released so I
Professor Walker noted that the discussion with parents should not just
be about the surgical procedure involved, but it should also convey the
importance of obtaining as much information as possible about why the baby
I often ask those families, 'Can I spend a little bit of time
to try to ascertain what I can about why your baby might have died?' If we had
a minimum dataset that recorded biometry, amniotic fluid volume, whether there
was any evidence of fetal hydrops—that is, excess fluid accumulation within the
baby's body—if there were calcifications noted in the liver or the brain, then
these are things whereby, if a family does not have autopsy, at least we might
have some signal of why the baby died.
Nevertheless, even an autopsy may never provide an answer for bereaved
families, as one witness explained:
Ultimately, it showed that they found nothing, which to me
seemed unfathomable. I had given birth to a four-kilogram baby. He looked
absolutely perfect. It seemed insane that nobody could tell me, after
everything I'd been through—that this had all happened for no apparent reason.
In the months that followed after that I think we tried to contact a
pathologist to give us some sort of explanation as to what had gone wrong. At
the end of the day they couldn't really find anything.
These issues highlight the need for bereaved families to be better
informed about autopsies, and to be given the opportunity to meet the
pathologist performing the autopsy. Nevertheless, parents should also have
other options available to them.
Discussing autopsy after stillbirth
Educating clinicians and other health professionals about how to have a
conversation about a stillbirth autopsy may help bereaved parents to make an
Mr Brad Farrant highlighted the need for clinicians to be better trained
to discuss the importance of an autopsy with bereaved parents. He reported that
he and his wife were cared for by 'well trained and understanding midwives' who
gave them time with their baby and information about the autopsy and review
Nevertheless, the cause of the stillbirth could not be determined, highlighting
the need for more research. As Mrs Jaime Yallup Farrant observed:
...it's almost like there's an acceptance and a total
toleration that this just happens sometimes. People even said that to us: 'It
just happens sometimes, and we don't know why'—as if that's okay. And yet in
our society we would never accept that for SIDS, for example, or for cancer. If
people were dying of cancer and, as clinicians, politicians and a community, we
just went, 'You know, it just kind of happens sometimes; sorry and all,'
there'd be an uproar. I think that's part of what really needs to shift in this
conversation: the toleration that it just happens. Life happens, yes. Death
happens, yes. But lots of these cases are actually preventable if we do the
However, the trauma of an unexpected stillbirth may make it especially difficult
for a clinician to discuss the issue of autopsy with the bereaved parents.
Deciding whether to undertake an autopsy is a harrowing
decision for any parent to make at the time of their child's birth, and not
something that any of us expected to be doing. So this decision is not made
lightly, and it is made in the hope that answers can be found for the child's
death, and in the hope that others may also benefit from information
identified. It is therefore a travesty when this information is not used as
part of perinatal mortality audit, and lessons are not being learnt about how
maternity care can be improved to prevent stillbirth. 
Even in cases where the bereaved parents consent to an autopsy, the
decision may still be fraught with uncertainty or the results may leave parents
with more questions than answers. This situation demonstrates the need for more
research into unexplained stillbirths.
I cannot explain why she is dead and I have no way to prevent
this from happening again in any future pregnancies. I don’t know if anything
more than the autopsy and placenta analysis could have been done to try and
identify the causes of Hannah’s death. I wish that more were done to find out
about the causes of stillbirth, about understanding why it happens and about
finding ways to prevent this happening to other families. It is inconceivable
that for the last two decades there has been no improvement in the rate of
stillborn babies, and that in more than 40% of cases the cause of death is
unknown. I am not aware of anything I could have done to prevent Hannah’s death.
I would have done anything in my power to prevent my daughter’s death. Had
there been more research and investigation into stillbirths, she might still be
We owed it to ourselves, because we would have to live with
not knowing, if we didn't pursue that, whether there was perhaps something
genetic or something that could affect our future children. We felt not that we
didn't have a choice, but that from a medical sense that was something
important we needed to pursue. I know that we were very lucky that we did get
an answer, but we had a six-week wait to receive that answer. I really
struggled with that wait. I'm thinking medically: 'Oh my God; is it this? Is it
that?' It was building my anxiety, because I just wanted to know why this had happened.
It's also very difficult, when you put your child in their coffin, and you go
to re-dress them, to see that they had been cut. Obviously that is done with
the utmost respect, but it's very difficult to see your child like that, and I
can understand that many parents just can't do it. But, in moving forward, we
need to talk to parents about how important it is to do these post-mortems and
to do more research. That way we can figure out why this is happening. There
are so many people that just don't get an answer. There have to be answers out
there; we just don't know what they are yet.
Bereaved parents need to be confident that the information gathered in
an autopsy will be available to stillbirth researchers so that, ultimately, the
results might help prevent future stillbirths.
[Had I] had more time to take every ounce of my experience
into consideration, and to understand the real value in proceeding with an
autopsy, my decision would have been different...it is absolutely necessary and
paramount that medical professionals engaged in this type of scenario are
equipped enough to navigate parents and families to really raise awareness as
to why conducting autopsies and examinations is so important.
One witness expressed concern that bereaved parents were not asked for
information about their own observations and experiences in the lead up to the
stillbirth, noting that such information may help to inform the results of the
investigation. In her own situation, Ms Britt Jacobsen and her partner had consented
to an autopsy because they not only wanted answers but also hoped that the
information yielded might help other families.
Professor Euan Wallace, Carl Wood Professor and Head, Department of
Obstetrics and Gynaecology, Monash University noted that, following the inquiry
into perinatal deaths at Bacchus Marsh, Victoria had established a dedicated
perinatal autopsy service. However, he also noted that there are a limited
number of sites where such autopsies are undertaken, meaning that a stillborn
baby may have to be taken to another hospital for autopsy before being returned
to the bereaved parents, adding to the trauma and cost for parents.
Dr Gordon pointed out that a perinatal autopsy service in Victoria
included a skilled coordinator as the first point of contact for a bereaved
family in the hospital, and offered a useful model for how an autopsy might be
discussed with bereaved families in a culturally and linguistically sensitive
Still Aware, Australia's only not-for-profit organisation dedicated to
raising awareness of stillbirth, provides information for clinicians and
parents about stillbirth both online and at public events, promoting open
dialogue about the realities of loss 'in order to break the silence and taboo
surrounding stillbirth' and empowering parents to be actively involved in
monitoring their pregnancy. Contrary to being confronted by autopsy
information, Still Aware found that women and their partners were generally
grateful to receive it.
They know that they will get a full report. They know will go
through what happened. If we have done any sort of clinical investigations or
root cause analyses they know they'll get feedback from those. Our hope is that
in the future we'll also be able to engage families in the review of their
baby's death, as well as be feeding back the information about the review.
That's one of the things that have happened in the UK. The Each Baby Counts
program has very much tried to involve parents in the death review process—not
just giving them the results in a coordinated fashion, but getting their story
to add to the events that surrounded the baby's death. If that happens, that
would be amazing.
Professor Flenady noted that the IMPROVE program includes a 'whole
station...about how to have that conversation and the importance of the autopsy
examination', although the lack of funding for the program has restricted its
Dr Gordon stated that there are other options available to clinicians
and parents, apart from full autopsies. These include minimally invasive
autopsies, a post-mortem MRI scan, an external examination by a skilled
perinatal pathologist, in addition to a placental examination which is considered
vital for every stillbirth.
Where an autopsy is not conducted, placental investigation can still
yield important information about the stillbirth. As Dr Diane Payton, Chair,
Paediatric Advisory Committee, Royal College of Pathologists of Australasia stated:
A detailed knowledge of placental pathology is also required,
as the placenta is vital for the wellbeing of the infant during intrauterine
life and placental pathology is being increasingly correlated with intrauterine
Associate Professor Kerryn Ireland-Jenkin, Head of Unit, Victorian
Perinatal Autopsy Service (VPAS) described the placenta as the 'black box
flight recorder' of pregnancy. She argued that a placental examination should
be undertaken in all perinatal autopsies following stillbirth, and noted that
VPAS had recently conducted a course to update pathologists and pathology registrars
from Australia and New Zealand on the guidelines for placental pathology.
Protocols for stillborn babies held in hospital morgues
The committee heard disturbing evidence about six stillborn babies of
Aboriginal descent who had remained in the morgue at the Katherine Hospital,
Northern Territory, for a number of years.
Ms Sara Potter, Clinical Nursing Midwife, Maternity Ward, Katherine
Hospital, noted that the mothers may be transient or live hundreds of
kilometres from the health service, and the difficulty for hospital staff in
knowing how to manage these circumstances, even when the families were able to
Ms Potter highlighted the lack of resources available for locating and
working with bereaved Aboriginal and Torres Strait Islander parents, and noted
that there may also be financial issues for the parents themselves. Until
recently there was only one funeral service provider in the Katherine area, and
they charged $4000 for a service.
However, the Stillborn Baby Payment was inadequate to cover the high
cost of a funeral service in Katherine, and there were no other funeral
services operating in the town at that time.
Ms Belinda Jennings, Senior Midwifery Advisor, Policy and Practice, Katherine
Hospital, reported that a baby might remain in the morgue for several months
while culturally appropriate arrangements are made for a funeral service. She
described how a model of 'satellite care' can be used in cases of perinatal
loss, where a midwife will arrange for care of the family to be transferred to
a primary health care provider, although she acknowledged that this is
difficult where the parents live in remote communities.
State and territory policies relating to babies held in morgues vary across
jurisdictions. In the Australian Capital Territory and Queensland, for example,
there is no legislation governing storage time for bodies held in a hospital morgue,
although in the ACT a social worker is required to follow up with families if
no communication has been received concerning the release of a body after three
business days from the date of admission.
There is no time limit for holding a body in Tasmanian or South Australian morgues,
although provision is made in Tasmania for a basic funeral service under the
Unclaimed Deceased Person Policy.
Culturally appropriate education
Inclusive, culturally appropriate education is important, particularly for
families from culturally and linguistically diverse backgrounds including
migrants and refugees. The NHMRC has stated that:
All Australians have the right to access health care that
meets their needs. In our culturally and linguistically diverse society, this
right can only be upheld if cultural issues are core business at every level of
the health system-systemic, organisational, professional and individual.
Drawing on his experience as a member of the Western Australian (WA)
Perinatal and Infant Mortality Committee, Dr Gannon noted that there was a need
to address the particular circumstances of the diverse groups affected by
stillbirth, and argued that the current PSANZ guidelines are inadequate and
should be reviewed in the light of recent research into perinatal mortality.
Gaps do exist between women having their babies in rural
areas and metropolitan areas. Gaps exist between Aboriginal and Torres Strait
Islander women and non-Indigenous women. Gaps exist between culturally and
linguistically diverse women and non-CALD women. And there are very real gaps
between public and private hospitals. The greatest opportunity would be to
construct a prospective study of women who have suffered a stillbirth and
measure the perinatal maternal and psychological outcomes in their subsequent pregnancy.
The Multicultural Centre for Women's Health recommended that educational
materials on stillbirth be delivered to migrant and refugee women via:
- bilingual peer support and education initiatives, particularly
for newly-arrived women;
culturally appropriate multilingual resources and education
materials developed in consultation with communities and migrant women who have
experienced stillbirth; and
referrals to antenatal care provided by an appropriately
qualified workforce trained to deliver culturally responsive care.
Educational materials for Aboriginal
and Torres Strait Islander communities
The WA Reducing the Risk of SIDS and Sleep Accidents in Aboriginal
Communities program, introduced in 2005, is a culturally appropriate campaign
in language. A similar pilot campaign has been undertaken in Victoria in
Red Nose made a decision not to translate its education materials into
every First Nation language, on the basis that there are over 250 language
groups in Australia. Instead, the organisation decided to translate them into
the four most prevalent languages apart from English, and to develop education
programs in more meaningful ways, in consultation with senior community health
professionals and Indigenous elders who participated in the advisory group. The
material is pictorial based and culturally appropriate.
Stillbirth Foundation Australia reported that it had moved to writing
and distributing stillbirth research findings for Aboriginal and Torres Strait
Islanders in a culturally appropriate manner and ensuring the correct use of
Education for employers and work colleagues
Some submitters and witnesses drew attention to the need for better
education designed for employers and work colleagues, particularly to provide
information and guide them in supporting an employee who is returning to work
after experiencing the trauma of stillbirth.
Mrs Jackie Barreau reported on her experience of returning to work, and
noted a campaign being conducted by Sands (Stillbirth and Neonatal Death Charity)
in the UK called Finding the Words, which seeks to assist employers to
talk with a bereaved employee following a stillbirth.
My experience of workplace support by my employer was
adequate and empathetic, but I was not prepared for the overwhelming grief that
I experienced most days. My fellow work colleagues were supportive, although
some were not sure what to say or what to do.
Efforts to reduce the rate of stillbirth in Australia must begin with
Australians being better informed about stillbirth and encouraged to
acknowledge stillbirth in public conversations. There is no doubt that the
culture of silence that surrounds stillbirth in Australia significantly adds to
the emotional trauma experienced by bereaved families.
This silence reflects a broader lack of public awareness about the
incidence and impact of stillbirth, and results in extended families, friends,
work colleagues as well as people in the wider community being unprepared or
unable to talk about stillbirth. In turn, this reinforces the profound grief
and sense of social isolation experienced by bereaved parents. The issue is
exacerbated by the fact that the current model of care for pregnancy and birth
tends to normalise birth and seeks to reduce fears about the risks involved.
Indeed, there appears to be a greater fear about stillbirth relative to other
risk factors in pregnancy and birth that are, statistically, less likely to
The committee agrees that better public education about stillbirth may
reduce the rate of stillbirths in Australia by helping to demystify the risk of
stillbirth and removing the stigma that inhibits clinicians and other health
professionals from discussing the risk with pregnant women because they fear
that it will cause them unnecessary anxiety.
The committee recommends that the Australian government develops and implements
a national stillbirth public awareness campaign, similar to the successful SIDS
campaign, which aims to demystify stillbirth, educates parents and the general
public about the risks of stillbirth, and encourages public conversations about
stillbirth as a public health issue.
The committee commends the IMPROVE training workshops designed to assist
clinicians and health professionals in managing a stillbirth or neonatal death including investigations,
counselling for autopsy and examining the baby.
Stillbirth also exacts an emotional toll on clinicians and other health
professionals who care for bereaved parents, and the committee recognises that
they too should have access to counselling and support services when they need
it during the course of their employment.
The committee recommends that the Australian government develops and
implements a national best-practice, culturally appropriate education kit that equips
current and future health professionals to:
- discuss risks of and strategies for preventing stillbirth with pregnant
provide culturally and linguistically appropriate information
about counselling and support services to assist them with emotional support
whilst caring for parents following a stillbirth.
The committee considers that protocols need to be developed to guide
public hospitals and health centres in managing autopsies or other investigations
into stillbirths and providing culturally appropriate counselling for autopsy
and other medical investigations.
The committee is also concerned that there is no nationally consistent
approach in public hospitals and community health services as to how they care
for stillborn babies held in morgues; how they communicate with the parents of
those babies, particularly for parents who may live long distances away from
the hospital where their baby was stillborn; and how they assist those parents
who may find the cost of a funeral service prohibitive and require advice on
The committee sought data compiled by public health authorities in the
states and territories relating to unclaimed stillborn babies left in morgues.
Whilst not all jurisdictions responded within the committee's timeframe, it is
clear to the committee that the situation varies across jurisdictions and
requires a nationally consistent approach.
The committee recommends that the Australian government develops and
implements culturally and linguistically appropriate protocols for public
hospitals and community health services in all jurisdictions, to guide them in:
- managing autopsies or other investigations into stillbirths;
counselling for autopsy and other medical investigations;
care of stillborn babies held in morgues; and
communicating with bereaved parents.
The success of public health education campaigns depends in part on
being informed by high quality research. The committee is concerned that there
is no central point of access to the growing body of research and clinical
guidelines regarding stillbirth. As a result, this important resource is
fragmented and difficult to access for researchers, clinicians and other health
professionals, support and advocacy groups, and members of the general public.
As a starting point, the committee considers that an Australian online
register, similar to the International Society for the Study and Prevention of
Perinatal Infant Death, would help to reduce fragmentation and duplication of
effort across the jurisdictions, and provide greater access and education for
those involved in stillbirth research as well as care providers and families
who wish to undertake their own research.
The committee recommends that the Australian government creates an
online register of current international and Australian research and clinical
guidelines relating to stillbirth, accessible to all interested stakeholders
including the public.
The committee recognises that better community education about
stillbirth is a high priority, and urges the Australian government to develop culturally
appropriate educational materials—informed
by international best-practice models such as the UK program Finding
offer information about stillbirth, practical guidance on how to talk about
stillbirth, and strategies for supporting a person who has experienced the
trauma of stillbirth.
Such educational materials need to be culturally appropriate and aimed at
a wide range of people in the community
including extended family members, friends, employers, work colleagues,
and anyone who may know or encounter a bereaved parent.
The committee recommends that the Australian government develops and
implements a best-practice, culturally appropriate public education kit that
assists families, friends, employers, work colleagues and people in the wider
community to understand stillbirth and to offer support to a bereaved parent or
family member following a stillbirth.
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