Malarndirri McCarthy (NT, Australian Labor Party) Share this | Link to this | Hansard source

On behalf of the Chair of the Select Committee on Stillbirth Research and Education, I present the report on the future of stillbirth research and education in Australia, together with the Hansard record of proceedings and documents presented to the committee, and move:

That the Senate take note of the report.

Bajinda yamalu yinda, ngara Yanyuwa li-anthawirriyarra. I would like to acknowledge the traditional lands of the Ngunnawal and Ngambri peoples, and acknowledge this is an incredibly historic day for the Australian parliament. I have with me at the pleasure of The President and The Deputy President a coolamon, which, in First Nations People's way, is important for our babies. It is also important for other parts of First Nations culture—that is, for food gathering, for water, for life giving. I have the symbol of this symbol of the coolamon with me today to acknowledge especially the parents and families who are here in the Senate to witness this historic occasion, but also to say thank you to each and every one of you and all those listening and watching across Australia who couldn't be here but are here in spirit, just like your children are with us, your babies. In my language we call it li-ardabirri or bardada and the spirit of your bardada is here with us in the Senate, in the Australian parliament. It is so significant what you have done in sharing your personal stories and journey with us, the committee, and with Australia. We are going to change and make a difference across this country, and I thank you from my heart to yours for being so open, and for your babies, who are with us too.

I also want to thank and acknowledge the members of this committee: deputy chair Senator Jim Molan, Senator Janet Rice, Senator Catryna Bilyk, Senator Lucy Gichuhi and most especially Senator Kristina Keneally, whose advocacy and passionate perseverance in guiding and directing our parliament to this point has been so important. We decided from the outset that this had to be a sacred journey, carrying our babies, remembering and honouring the spirits who have passed but also the spirits of our babies who are yet to come. There had be to a sacredness to this journey, and I thank each and every Senate committee member for holding that, for holding those babies and holding the sacredness of this important report to the Australian parliament.

Stillbirths affect over 2,000 Australian families each year, and, for women from Aboriginal and Torres Strait Islander backgrounds, the rate is double that of other Australian women. Despite advances in medical care and treatment, the rate of stillbirth in Australia has not declined over the past 20 years, and too many of those stillbirths are deemed to be unexplained. This is not acceptable. There is a culture of silence around stillbirth. It is a hidden tragedy, with personal, social and financial consequences. It needs to be regarded as a public health issue, with economic as well as social costs on a community level. And, of course, the cost on a very personal level is not quantifiable.

Our report highlights that stillbirth will directly and indirectly cost the economy $681 million between 2016 and 2020. It examines the risk factors which relate not only to individual, maternal health factors but also to issues such as geographical location and race. Around 33 per cent of all stillbirths in Australia happen to women who live in regional and remote areas of our country. According to Australian Institute of Health and Welfare data, the further away women are from a major city, the higher the rate of stillbirth. And, as I've said, the rate for First Nations women is double that. There are higher stillbirth rates amongst culturally and linguistically diverse communities in Australia, so our women from non-English-speaking backgrounds suffer a great deal in silence.

There is a clear need to improve the cultural protocols around dealing with families who have suffered stillbirth. The committee heard very disturbing evidence about six stillborn babies of Indigenous descent who remained in the morgue at the Katherine Hospital for a number of years—six years, in some cases. Evidence was presented in relation to the difficulty of contacting families who lived in very remote communities and the lack of resources available for locating and working with bereaved families, and it was noted that there may also be financial issues.

Another key issue raised by witnesses and submitters in relation to employment matters concerned leave entitlements for parents who experienced a stillbirth. We heard evidence from women who had been made redundant while recovering from a stillbirth. A key recommendation of this committee was that section 77A of the Fair Work Act 2009 and provisions relating to stillbirth in the National Employment Standards be reviewed and amended to ensure that provisions for stillbirth and miscarriage are clear and consistent across all employers and that legislative entitlements to paid parental leave are unambiguous in recognising and providing support for employees who have experienced stillbirth. This report calls for a national stillbirth action plan that aims to reduce the rate of stillbirth over the next three years by 20 per cent.

I'd also like to acknowledge the work of Sophie Dunstone and her team in the secretariat.

This inquiry was certainly the most difficult that I've been on, both in my time in the federal parliament and in the Northern Territory parliament, because we are carrying deeply the very real stories that impact Australians in this country. You know what, Madam Deputy President? We can make a difference with this report. Our parliament can make a difference, and this country can make a difference for all Australian families. I commend the report to the parliament.

Jim Molan (NSW, Liberal Party) Share this | Link to this | Hansard source

I'd like to join with Senator Malarndirri McCarthy in acknowledging the extraordinary debt that every Australian owes to each witness who submitted evidence to the stillbirth research and education select committee, and that is simply staggering. These parents who have lost a child revealed to a group of strangers the details—clinical and emotional—of their tragedy. The experiences and recommendations, with the input of clinicians and other experts, will indisputably reduce the number of future Australian families who endure this torture—and torture it is.

I volunteered for this committee because, on 12 October 2007, my wife, Anne, and I received a phone call; our daughter Sarah, then 26 years of age, had gone into labour with her and her husband Gavin's second child, a brother or sister for beautiful little Sophie, who was 16 months old at the time. Plans were made for us to hurtle across the Hay Plain to get to Nyah, in Victoria, in the next few days. Our daughter Sarah organised the last of her freezer meals before she and Gav drove into Swan Hill hospital. It hadn't been a difficult pregnancy. Sarah had a perfectly normal ultrasound less than 48 hours earlier, so it's fair to say there was much joviality and excitement anticipating Gavin's next call with an update or, if we were really lucky, with the happy news.

Sarah and Gavin were told on arrival at the hospital that there was concern for the baby, and they were rushed to emergency. They were rushed there for a scan which confirmed that the baby had died. Sarah became hysterical for a time, urging the staff to take the baby by emergency caesarean section and attempt resuscitation. Some 30 minutes later, they were composed enough—I hope I'm composed enough—to phone both sets of parents and inform us that their daughter had to be delivered normally and that the labour could not be accelerated. Emily Charlotte Sutton was born at 8.07 pm, believed to be approximately 40 hours after she had died.

The recommendations of this report will spare many Australian parents from the unimaginable grief of your baby going to the hospital mortuary instead of to the nursery, of making autopsy arrangements, of postnatal mothers being supported to walk through a cemetery to choose a plot for their baby, of a funeral with the smallest of white coffins being carried by a shell-shocked family member and of returning home to a house full of baby paraphernalia. That's just the blur of the first week or 10 days. Having found the strength to do all this, Sarah, Gavin, all our witnesses at this inquiry and every other traumatised, bereaved parent then has to find the strength to get out of bed and function each day for the rest of their lives. In many cases, families, friends and countless members of bereaved parents' communities gather magnificently around a mother, father or couple who have had a stillbirth. Love, kindness and generosity can be extended readily, but it is not necessarily guaranteed to provide a degree of comfort or appropriate support. It gives me exquisite pleasure to recognise that this report will reduce the occasions on which our families and communities endure this pain and rally in response to it.

As well as her big sister, Sophie, now 12 years old, Emily has a little brother, Angus, who is eight. Emily is loved and remembered every single day.

The committee heard about the significant and far-reaching impacts of stillbirth in Australia. As Senator McCarthy said, stillbirth affects over 2,000 Australian families every year. For every 137 women who reach 20 weeks pregnancy, one will experience a stillbirth.

This report is all about a national commitment, as our chair said. In countries where a national commitment has been made to reducing the rate of stillbirth, policies and practices have been changed and stillbirth rates have declined significantly. The committee concluded that Australia needs a consistent and coordinated approach to stillbirth research and education at a national policy level and recommended that a national stillbirth action plan be developed, with the aim of reducing the rate of stillbirth in Australia by 20 per cent over the next three years.

I would like to conclude by acknowledging the work and leadership of the chair of the committee, Senator Malarndirri McCarthy, and the secretariat of the inquiry, Sophie, and her great team, who produced excellent results. In particular, I would like to acknowledge Senator Kristina Keneally, who predicted that this would be an inquiry with no bad guys—and she has been perfectly right. This is how the parliament should work.

Janet Rice (Victoria, Australian Greens) Share this | Link to this | Hansard source

'No bad guys' is exactly how it was. I really want to start by thanking everyone, because it was such a journey that we were all on. It was a journey for the committee and we worked so well together. It really was about bringing together, across the parties, people who are passionate about achieving change. I particularly want to thank the people who had the bravery to submit—those who shared their stories in writing and those who had the bravery to come and present in person and tell their stories to us, knowing that by sharing their stories they were making a difference. It was hard. The inquiry was triggering for virtually everybody who was involved in hearing those stories and the emotional journeys that people had gone through, hearing the awful stories of loss and wondering how people could get through that and share it. For all of us, we knew there was going to be some good that came out of it; that there was purpose in it and purpose in us all being able to work together to learn from these experiences and the stories that we all shared to get some better outcomes in reducing the rates of stillbirth in Australia.

I really do want to thank Senator McCarthy for her leadership and the way that she conducted this inquiry, which was a genuine collaborative approach of creating a space where everybody's story and input was welcomed, whether it was from the people submitting or the people who were part of the committee. I want to thank Senator Keneally for her leadership and drive initially in making sure that this inquiry happened. It is an important moment for the Senate. It's an important process that we've gone through. It truly is representative of the Senate working at its best.

There are some important things that we learnt during the inquiry that, for me personally, I was shocked to hear. Just the stark rate of six babies a day dying in Australia of stillbirth was shocking, and so was the fact related to that—that your average person in Australia doesn't know that, with the level of taboo and silence there is around stillbirth. The very fact of us having this committee inquiry is tackling that and is helping to break that silence. That is something important that I think we have all learnt—the extent of families suffering the trauma of stillbirth, and the need to be able to talk about it and to give people the space to talk about it. That in itself will reduce the rate of stillbirth.

We learnt that there has been no change in the rate of stillbirth in Australia over 20 years, but other countries are doing significant things that are reducing the rate. That gives us hope, because we know that there are some mostly fairly straightforward measures that we can take that will have a real impact on changing the rate and reducing that level of trauma and suffering.

We learnt about the level of inequality and how, if you're an Indigenous woman in an Indigenous family or if you're a woman from a non-English-speaking background, you have much greater rates of stillbirth than the rest of Australians. That's just not fair. We need to be doing something about that. The recommendations of this inquiry go to some of those things—having an awareness strategy and really raising the profile so that people can talk about their experiences. That in itself means that, when a woman is pregnant, she can feel that she can learn about prevention and the things that need to happen in order to reduce the risk that she is going to have a stillbirth. In fact, we learnt that there are some very simple, straightforward things like changing the way you sleep and having a process of continuity of care—simple things like measuring the growth of the baby so you have measurements that are accurate and continuing that throughout the pregnancy so that any reduction in fetal growth can be picked up. That will make a significant difference. At the moment, we're just not doing that effectively in Australia.

We learnt about the importance of more research and the importance of collecting good data. Again, it's just about getting things coordinated and nationally organised so that that data is there so we can learn from the data. In particular, the main thing I took from the inquiry, which was reflected in the way the inquiry operated listening to people, was listening to women, their stories and their intuition being valued. That in itself is going to make a huge difference. Clearly having a model of care, having continuity of care, and having the people who are caring for the woman during her pregnancy actually listening to and being able to have evidence from the woman and the family really maximises the chances of a healthy outcome. That continuity of care in itself was something that I really strongly focused on during the inquiry. To me, it was really important to make sure that that in itself was going to help women be heard and have their wisdom and their knowledge valued, meaning that we were more likely to have positive outcomes.

Thank you to everyone who was involved and all of the committee members. Thank you so much to the people who submitted to the inquiry. You have taken part in and we have all been part of a very significant outcome for this parliament in this process.

Kristina Keneally (NSW, Australian Labor Party) Share this | Link to this | Hansard source

Two hundred and fifty-two days ago, the Senate voted to establish the Select Committee on Stillbirth Research and Education. In that short period of time—in just the eight months that have passed since the Senate inquiry began—1,512 babies have been stillborn in Australia. The report we table here today is a first. It is the first national investigation and report into the impact of stillbirth on Australian families and the Australian economy and the first national set of recommendations on what we as a nation can and should do to save babies' lives.

Six babies a day are stillborn in Australia, and the key finding from this report is that we can do better. Our rate of stillbirth is significantly higher than similar nations such as New Zealand, the UK, the Netherlands and Scandinavian countries, and while the rate of stillbirth has declined over the past 15 years in countries with similar levels of economic performance and educational achievement as Australia, the rate in Australia has stayed the same.

I will confess: there were times I grew incredibly angry as we undertook this work. The anger resulted from frustration because there are some clear, simple and relatively inexpensive steps that we can take in order to prevent and reduce stillbirth in Australia, and we have simply not done so. I didn't grow angry in any partisan way. This has not been a partisan inquiry. The Senate voted across all parties to support the Senate stillbirth inquiry, and I'm pleased to report that this is a report with multiparty support. I pay tribute to my colleagues: the committee chair, Malarndirri McCarthy, who led us with wisdom and grace; the deputy chair, Jim Molan, who was a pleasure to work with, and, strangely enough, whose military experience at times actually gave us great insight; and Senators Janet Rice, Lucy Gichuhi and Catryna Bilyk, who brought great patience, understanding, compassion and intellectual rigour to this work. I also note we were incredibly well supported by Sophie Dunstone and the committee secretariat, and I thank them for their thoughtful efforts.

The anger I felt wasn't directed at anything other than just grief that babies had died in this country when we could have saved them. And why didn't we? It was because for so long we have been understandably hesitant to speak about stillbirth. It's a particular sadness, a singular grief; one so hard to fathom that I can understand that, collectively, as a country we have considered stillbirth too sad to talk about as a public health problem.

This inquiry marks a significant moment. It means the country can no longer stay silent about stillbirth. It also marks a point at which we can no longer say that we don't know what we can do to help reduce stillbirth and save babies' lives. Broadly speaking, this report makes recommendations in three key areas. First, prevention: there are several recommendations that go to how we can help families and clinicians reduce the risk of stillbirth and know when we should intervene to save babies' lives. This includes national education, community campaigns, continuity-of-care models, and education and training for clinicians. Second, investigation: this includes investigating and understanding why stillbirth occurs, in order to better advise families in subsequent pregnancies and to recommend changes to clinical practice. These recommendations include investigating stillbirth properly, which we do not do, and that includes pathology and with autopsies. As a nation, we need to record information about stillbirths consistently and fully in the national dataset and make sure that data is made available to individual families, as well as in aggregate form to healthcare providers and researchers, as quickly as we can. Our recommendations also speak to the need for longer term funding certainty for research. Third, supporting families and clinicians after a stillbirth occurs: this includes care after a stillbirth to support families emotionally and, importantly, to ensure parents have access to paid parental leave and to help co-workers to support these parents when they return to work. Importantly, this report calls for a national stillbirth action plan that starts us on this effort by aiming to reduce the rate of stillbirth over the next three years by 20 per cent. This would be a remarkable achievement after 20 years of stagnation and inertia that has meant that so many lives have been lost and many more irreversibly changed.

Finally, I want to thank every person who made a submission, everyone who participated in this inquiry. I especially note the Centre of Research Excellence in Stillbirth, Stillbirth Foundation Australia, Still Aware, Maternity Consumer Network and SANDS and Red Nose Australia. I also want to thank the pathologists, the doctors, the midwives and the nurses who appeared before us. I particularly want to thank the parents and the grandparents who shared their grief so openly and bravely in public submissions. I honour all the parents who came before us to tell their stories in public hearings. Each one of you showed such generosity and love. To those parents who made submissions, to those parents who gave public evidence and to those parents who are here today: your children—Sandy, Annabelle, Elliott, Leilani, Patrick, Hope, Grace, Matilda, Evelyn, Harriet, Austen, Soraya, Lia, Rose, Coralie, Liam, Jonah, Hamish, Lincoln, Kayla, Jordan, Emma, Henrietta, Bethany, Archie, Angelo, Daniel, Senator Bilyk's son Timothy and my daughter Caroline—are lost to us, but this report is part of their legacy. Thank you. So much sadness, but today we begin to hope that things will change. I commend the report.

Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I welcome this report, and I was very keen to participate in this committee because, whatever policy changes arise from it, the inquiry has brought the topic of stillbirth out into the open. On 2 July 1983 I gave birth to a still baby. His name was Timothy Robert Bilyk and he's buried in Gungahlin Cemetery. I make a point of that because that was 35 years ago. I doubt there's been a day in my husband's or my life that we have not thought about him. I doubt that people realise that, in those 35 years, the statistics have not changed. To me, the importance of this inquiry was to ensure that we manage to change those statistics.

The committee's report refers to a culture of silence around stillbirth, and the first step in addressing this tragedy is breaking that silence and tackling some of the myths and misconceptions. For example, stillbirth is more common than you may think. We've heard that around 2,000 stillbirths occur in Australia every year—six a day. That's six broken families every day. It's 30 times more common than SIDS.

The evidence submitted to this inquiry has shown that very often stillbirth is, to a degree, preventable. There are known risk factors as well as strategies to reduce those risks. We know that the risk can be reduced because we've seen from evidence overseas that, through education and awareness, the United Kingdom, New Zealand, Norway and the Netherlands have been able to dramatically reduce their stillbirth rates. The risk of stillbirth needs to be discussed with all expectant mothers, and there are practical things pregnant women can do to reduce their risk, such as sleeping on their side and monitoring foetal movements. Improved general maternal health also reduces the risk, as some of the risk factors include obesity, smoking, diabetes and hypertension. These messages can be disseminated through a public education campaign, improved antenatal education and mobile apps to help monitor foetal movements.

Another consequence of the silence around stillbirth is the way that it isolates mothers and the other family members who have experienced it. Stillbirth can be just as traumatic for families affected by it as the death of any other child. Unfortunately, the standard of bereavement care for those affected by stillbirth still varies quite dramatically from hospital to hospital, but breaking the culture of silence helps us to better support families. Mothers, fathers, grandparents, siblings, aunts and uncles, cousins—they are all affected by stillbirth, particularly when they're also facing extra pressures with costs such as maternity care, the funeral and counselling. These pressures can be compounded by difficulty getting paid leave and the lack of specific provisions for stillbirth related leave. More than 50 per cent of stillbirths have no known cause, so we need more research as well as a coordinated and consistent approach to collecting data nationally—something that the inquiry highlighted as seriously lacking.

While I have little time today to go over them in detail, the committee's recommendations address the issues I've just outlined and are tied together with the recommendations for a national stillbirth action plan. I'm really pleased and proud that Labor has already led on these issues with our announcement in October of a $5 million package that we will deliver in government. This package includes: a national stillbirth strategy; an education campaign to encourage pregnant women to sleep on their sides; stillbirth research; and a free app to monitor the foetal heart and maternal sleeping. The strategy will be informed by this inquiry and developed in consultation with health professionals and, more importantly, with families who have experienced stillbirth.

I would also like to thank Sophie Dunstone and her committee team for their amazing work throughout this inquiry. Sophie seems to get some of the not-so-nice inquiries to deal with. I've worked with her on other committees, and she always does such a sterling job. She manages to bring people together and the witnesses together in an amazing way. Thank you, Sophie and your team. I was only a participating member on this committee; I wasn't a full member, but I did get to as many hearings as I could. To the other members of the committee: Malarndirri, you did an amazing job chairing this Committee sometimes committees aren't necessarily that smooth, but I think trying to improve things for parents of stillborn babies and to reduce stillbirths has really had an impact on all of us. Kristina, thank you for bringing it to the chamber. I will always remember your Caroline. Even though I didn't meet her, I will always remember her. Senator Rice, thank you as well and, Senator Molan, thank you.

One of the comments that really hit me and stayed with me since those hearings was by one of the mothers. I'm sorry, I can't remember who it was. She said, 'Talking about stillbirth doesn't necessarily mean it will happen to you.' That really hit home to me. It's like: that is so true. But preparing parents—mothers and fathers—for the fact that it might happen has been disregarded for so long. We really need to make sure that the recommendations in this report are acted on. All I can say is: thank you to everyone in the gallery and to the other witnesses and people who submitted. You weren't alone. We were on your journey with you. Thank you for your courage and for your bravery in telling your stories. It wasn't in vain. Thank you.

I seek leave to continue my remarks.

Leave granted; debate adjourned.