Parliamentary Committees

Select Committee on Stillbirth in South Australia

Ms SAVVAS (Newland) (11:03): I move:

That the final report of the committee be noted.

Forgive me, for I will no doubt falter in my words today. I would like to acknowledge the presence of advocacy groups, health professionals and, of course, bereaved parents in the gallery this morning, including one very special bereaved parent on her first visit to our parliament: my mum, Rachel.

We have been forever shaped by the loss of my baby brother, Benjamin Isaac. I will never forget the day that I was told he would not be coming home with us. I stood on the grass out the front of the women's and kids' as a four year old on the phone to my mum. 'The baby is going to be looked after by Mrs Murphy in heaven,' she told me. Mrs Murphy was my great-uncle's mother, who had passed away in the months beforehand, and we had all loved her. I could not quite understand why being looked after by Mrs Murphy would be a bad thing.

In the days, weeks and months following, I felt myself grow up very quickly. I will not forget watching my mum at the cemetery as my little brother's casket was lowered into the ground, nor will I forget the way his passing changed the dynamic of our family for good. I know my family is not alone in that.

The unwavering change in the Australian stillbirth rate signifies that, in the last 20 years, over 40,000 babies' deaths changed families around our country forever. Over 40,000 babies did not take their first steps or learn to ride a bike, or have their first day of school. That is over 2,000 families each year not bringing their baby home. Despite the significant advancements in health care, and Australia being one of the safest countries in which to give birth, at least six babies are born still every day—double the national road toll.

I know that much has changed since my brother's passing. The establishment of the Wattle Clinic at the women's and kids', for example, means that the support my mum received in subsequent pregnancies is now being formalised to help families navigate the complexity of pregnancy after loss. But despite that, the most recent figures show that the stillbirth rate is rising—8.7 per thousand births—and that is the highest rate recorded in Australia in 20 years.

Red Nose Day and the SIDS campaign paved the way for an evidence-based safe sleep program, to reduce the risk of babies dying in their sleep. This is estimated to have saved 12,000 little lives. With the development of the National Stillbirth Action and Implementation Plan, and the implementation of effective prevention and awareness campaigns regarding stillbirth, it is my hope that even more babies' lives can be saved.

During our inquiry, the select committee heard from bereaved parents, support services, stillbirth awareness groups and charities, medical associations, academics, psychologists and government bodies. I am grateful to everyone who took the time to provide a submission to speak with us, in particular the bereaved parents—thank you for sharing your stories. I am really proud of our recommendations today and I will speak to a few of them.

The first area of recommendation goes to improved data collection and research effort. We know that the rollout of the Safer Baby Bundle here in SA has not been consistent, and we want to see consistent uptake as well as consistency in those conversations being had with expectant parents. We are encouraging a specific evaluation of the bundle here in SA, as well as the embedding of the bundle into our SA Pregnancy Record, following on from Western Australia.

We are also encouraging formalised timely data collection. We have heard time and time again that the data with respect to lost babies is lagging behind, and there are two issues that we see with that:

(a) it makes it incredibly difficult to assess the success of the National Stillbirth Action Plan and/or the Safer Baby Bundle; and

(b) it is one more barrier for bereaved parents in their quest to feel that their baby's life and subsequent death has been acknowledged.

The second area goes to standardised resource distribution and empowerment. This recommendation goes to the provision of standardised resources to every pregnant woman, regardless of cultural and linguistic diversity or postcode. The Your Pregnancy brochures, from Still Aware, offer evidence-based information, advice and guidance about each stage of pregnancy, including common questions about fetal movement, sleeping position and trusting your maternal instinct.

Thirdly, we are recommending improved education and continued professional development, not just for the benefit of families but for the clinicians themselves. There are a number of wonderful clinicians who do their best in these circumstances but, unfortunately, most are just not trained to do so, although there is education available from the Department for Health and Wellbeing, as well as the Stillbirth CRE, and I do note that WCHN and NALHN have recently supported midwives to complete the COPE training course.

From evidence received, we do believe that uptake of this training needs to be further strengthened to provide consistent, compassionate support to bereaved families. It is very clear that this needs to start at university, and we are recommending that South Australian universities embed loss into their undergraduate midwifery curriculum. Midwives hold a primary responsibility for supporting women and families during stillbirth. One parent, while noting that staff did show compassion after their baby's delivery, stated:

It was obvious that most staff there had never encountered a stillbirth. I believe it had been over 15 years since one had occurred at the hospital. Many of the nurses were very uncertain and uncomfortable about dealing with us.

This isn't fair on parents, and it isn't fair on clinicians either. We want our health professionals to be empowered and supported through what is likely to be incredibly traumatising for them as well. Starting that conversation early in their journey is important.

Fourth, we are recommending standardised and trauma-informed bereavement care at our hospitals. This will include the implementation of a formal bereavement midwifery model at maternity hospitals. We do know these champions of care exist in many settings, but we also know that babies come whenever they like and it is important that we have a model where there are teams of professionals specifically trained in bedside trauma care and infant loss.

We are recommending a standardised process for bereavement care as well as a trial of the Precious Wings model of memory box delivery, which provides both memory-making for families and educational resources for clinicians. We are recommending—and I am really pleased with this one—an expansion of the current follow-on care for live births, traditionally delivered by CaFHS, to support bereaved mothers inclusive of at-home visits. One parent noted:

From day two postpartum I was to experience the first example of how stigmatising stillbirth is, realising that a postpartum grieving mother was deemed not to require post-natal midwifery care because I did not have a live baby in my arms. I remember wondering on day four, with painfully engorged breasts, whether the emotional pain in my heart was worse than what I was feeling physically.

We are also recommending ongoing funding to the beautiful team at Red Tree to continue their delivering of counselling supports for families who have lost a pregnancy or child up to 17. This is a vital service, and I am incredibly pleased that our government will be continuing to support Red Tree moving forward.

Recommendation 5 goes to future conception planning, and I acknowledge for the record today the complexity of navigating pregnancy after loss. For those parents who decide to conceive again after a miscarriage, stillbirth, neonatal death or loss of a child, it can be a very complex and anxiety-inducing period.

I was incredibly pleased to stand up at the women's and kids' a year ago tomorrow and talk to the success of our First Pregnancy After Loss, or Rainbow Clinic, here in SA. I am really pleased to be recommending the continued rollout of these clinics and I do want to acknowledge the incredible work of Tina Bode, who is here today somewhere in the gallery, and the team at the Wattle Clinic.

They offer additional appointments for things like early screening for gestational diabetes, increased fetal movement assessment and the possible use of low-dose aspirin if pre-term pre-eclampsia or other forms of placental dysfunction were evident in previous stillbirths, not to mention the psychological benefits for families who do not want to be repeating their stories at every visit.

We are also recommending a Purple Butterfly program. We have seen so much success in the Sunflower Project as a universal symbol of hidden disability, it is the hope of the committee that this bereavement symbol will silently acknowledge the pregnancy loss, facilitating a respectful, sensitive environment. This symbol will remove the need for explaining previous trauma at every hospital presentation. Additionally, it will benefit healthcare professionals and prepare staff when meeting patients for the first time.

Finally, we are recommending an investigation into the ways we help parents who wish to conceive again after what is identified as a preventable loss. I do want to acknowledge Chris Barnett and the broader team here in SA who are doing leading work in genomics.

We are advocating for some changes to the model of care at our maternity hospitals. Firstly, we are recommending an expansion of models of midwifery-led continuity of care, particularly in rural and remote communities. We are recommending also a separate space at the new Women's and Children's Hospital, somewhere where parents can deliver their children without the sound of crying babies around them.

I acknowledge that generally mothers are sent to the rooms furthest away at the current women's and kids', but many submissions still mentioned the sound of crying or walking through the hallway and seeing babies in incubators, not to mention balloons and flowers. One submission said:

Once everyone left they left me in the birthing suite for observation where they tried to medicate me to sleep but I didn't sleep a wink. All I could hear was other women having babies and hearing the babies being born crying repeatedly. This was so distressing.

Another said:

Most devastating of all, as we made the most difficult of walks leaving our dead baby in the hospital, we passed other rooms in the birth suite. We heard a baby's heartbeat on a CTG monitor and a newborn baby crying. I nearly physically collapsed from the shock and the grief.

While we acknowledge that birthing suites may need to be close together for access to resourcing and medical equipment and supplies, we believe this can be done in a way that allows for privacy and sensitivity during an incredibly traumatic but important time where parents are saying goodbye to their babies.

Finally, we will advocate for a streamlined approach to the federal government, particularly with respect to a national stillbirth awareness campaign, psychological supports and preconception testing. I will also advocate to cemetery providers, including councils, for reduced fees for burying infants. I am completely shaken by the stories from parents who said:

I asked what would happen if we didn't arrange this and was told after a month or two the baby would be disposed of as medical waste, which shocked me to my core.

I acknowledge the incredible, valuable support of those private funeral providers who have shown compassion and kindness to bereaved families, and the huge number of councils which have done the same.

When I asked my mum for her blessing to establish this inquiry she told me that she never thought my brother would have a legacy. I want to thank each and every parent who has contributed to our work. I hope our report is a strong legacy for your little ones.

In my household we were raised knowing and loving our baby Ben, as we often called him. Each year he was remembered with a new ornament on the Christmas tree. Some years we would buy a gift at the Kmart Wishing Tree for a boy his age. On special occasions we would sit amongst families like ours at the baby cemetery wondering what his life would have looked like. We remembered our baby Ben with a portrait hanging in the front hall of our family home. We remembered our baby Ben with his footprints proudly displayed above the kitchen sink. We remembered our baby Ben with a Benjamin ornament on the tree each year but, until now, like so many babies loved and lost, he has only been remembered by us. With this report I remember him for the record, not as a member of parliament but as a proud big sister, and with this report I thank my mum for letting this be our baby Ben's legacy.

In closing, as their legacy with many of their parents joining us here today, I would like to acknowledge the stories of other babies who have contributed to this legacy: Harry, Emma Louise, 'Gromit', Avery, Celeste, Gemma Violet, Conor James, Oscar Frederick, Sofia Josephine, Theodore Lawrence, Bella Grace, Alfie, Blair Anne, Aurora, Harry, Willow, Jack, Alexander, Daniel Junior, James, Jacob, Claudia, Reggie, Liam Henry, Tommy, Askel Jude, Ayla, Connor, Elaria, Lucas Adam, Isabel Nellie, Chaunte Rose, Aya, Ella Grace, Hunter Jude, Zen, Phoebe, Toby, Ezra Alexander, Charlie and Sophia, Kendra, Norman Thomas, Mia Siena, Tom, Olivia and Sophie, Aimee, Leo, and, of course, Benjamin Isaac, as well as all pregnancies lost, babies lost and unnamed babies in the stars. This is for you. Thank you.

Mr TELFER (Flinders) (11:17): Well done to the member for Newland. There will be a few tears in this chamber today, not just on the floor but in the gallery, I know, probably tears that are only a small portion of the emotion, love and care that this report represents. I have been watching with interest the work that has been done and I congratulate the member for Newland on bringing it to the attention of this place because it is sadly untalked about subject matter.

It is one that families carry with them and is often one that is, as the member for Newland has spoken about, only grieved within that small family cohort but perhaps one that is carried through. Every time a day goes past with a smell or a sight or a reminder is a day of a reminder of what could have been. Every time that someone says, 'That's a big gap in between those kids,' only you know the reason for that gap.

I want to speak about some friends of mine in particular who went through the most challenging time, lost their baby at beyond full term. It is one we share their grief in, one where we were able as young friends to attend a service to recognise the life that never was, a baby who was not able to take their first breath but who is a key part of their family. It was their firstborn. Thankfully, they have gone on after this incredible challenge to have the remainder of their family being born, but they will always have that gap, that hole at the start of their family.

There are some really important recommendations shared within this report. I congratulate the committee on being thorough in the way they have gone about it. I also want to impress to those who are reading the report and covering this that the burden on regional families is even greater because of the isolation faced going through a situation like this.

Often it is a traumatic situation where they have ended up at the Women's and Children's Hospital in Adelaide and gone through exactly the same situation that the member for Newland talked about: the level of grief, of shock, of uncertainty and then they have to go home. My electorate is hundreds of kilometres away from the Women's and Children's Hospital, and the support structures, which are already not enough, are even less accessible in regional communities.

I hope with the tabling of this report that there is understanding of the depth of grief and the depth of challenge faced by grieving families, and mothers in particular. The maternal instinct that the member for Newland spoke about is really special. Speaking to mothers who have lost their children, they knew; when they woke up they knew something was wrong. They did not know what was wrong but it ended up in a terrible situation.

That aspect is really important and for medical professionals to understand that intrinsic maternal link to the unborn child is a really important one. Life is so precious. Life is so precious and we should do what we can to hold it near and do what we can to support those who have sadly experienced loss of life. It is only in a situation like that that you can really understand how precarious life really is and how much we should hold on to it dearly.

This report has made a series of recommendations. In reviewing them, I am really appreciative of the thorough nature of the report. As I said, I want to ensure that there is not just a metropolitan focus but that there is an understanding of the additional responsibility that we have as decision-makers to ensure that those who live in postcodes further away from 5000 have the supports necessary to be able to get through. Support from the CaFHS nurses is really important but, sadly, we are seeing it becoming harder and harder to get CaFHS support in regional South Australia and that is something that needs the understanding of decision-makers.

If you are living out in a community, a farm or wherever a hundred kilometres away from anywhere, that CaFHS nurse is the connection you need, that reassurance, that support, whether you have a baby in your arms or whether you are grieving the loss of a child born without taking a breath, it is a really important thing.

Once again, I congratulate the member for Newland. I thank the members in the gallery for being here. Thank you for your understanding as we deal with having to articulate emotion on the floor. I thank those who have been putting in efforts to build a greater understanding within both community and the medical profession about some of the different aspects of the causation of this terrible challenge that is being faced and also the support structures for those who have to face it. Sadly, these incidents will happen. Even with the greatest of science, there is always going to be those who experience loss, so the support that is provided is really essential.

I commend the report. I thank the member for Newland and the rest of the members of the committee. I am sure I would have been a blubbering mess in the committee as we heard presentations—as we all would have been. If we have not experienced loss ourselves, we all know someone, a family or a couple, who have gone through some of these challenging situations. With that, I conclude my remarks.

Ms WORTLEY (Torrens) (11:24): I stand today in support of the South Australian parliament's report of the Select Committee into Stillbirth in South Australia. In doing so, I acknowledge first the dedication by the Chair, the member for Newland, who through the establishment of the committee honoured her brother, baby Ben, who was born still. I acknowledge also all of the parents and family members who presented evidence to the committee and those who appeared before the committee, including those here today who shared their heartbreaking journey with us. I acknowledge them as parents and I acknowledge each of their babies.

While stillbirth is defined by the Australian Institute of Health and Welfare as the death of a baby after 20 weeks of pregnancy or weighing 400 grams or more, there are also many bereaved parents who endured the loss of a much-wanted baby earlier in their pregnancy, and I acknowledge them also today.

Stillbirth and miscarriage are often seen as taboo subjects. However, it has become clear through the evidence presented to the committee that it should be spoken about during pregnancy with expectant parents in antenatal classes and by medical practitioners, and that this may assist to some degree with alleviating social isolation, misplaced guilt and frustration of bereaved parents and families should the pregnancy outcome be a stillbirth or miscarriage. While some stillbirths can be prevented, there are many that cannot, and the overwhelming evidence provided to the committee was that awareness and being informed on the possibility is important.

On an average day in Australia, six babies are born still, affecting more than 2,000 families each year. It is estimated that around one in every 135 pregnancies that reach the 20-week mark will end in stillbirth, and it is higher in First Nations populations and disadvantaged groups. The committee heard from numerous experts that side sleeping in late pregnancy can significantly reduce the rate of stillbirth and, further, that side sleeping after 28 weeks more than halves the risk of stillbirth compared to sleeping on the back.

This information has been incorporated in Stillbirth CRE's Safer Baby Bundle handbook. We also heard from the Australian College of Midwives that maternal awareness of any changes in fetal movement, decreased or increased, is extremely important and that with timely assessment and follow-up the possibility of stillbirth may be reduced.

The committee developed seven recommendations, the summaries of which are improved data collection and research effort, standardised resource distribution and empowerment, improved education and continued professional development, standardised trauma-informed bereavement care, supporting future conception planning, models of care at maternity hospitals, and continued advocacy for a streamlined approach. The member for Newland, the Chair of the committee, has gone into some detail with those.

While acknowledging that not all stillbirths can be prevented, we heard that the adoption of the recommendations will help reduce the risk of stillbirths and, further, that when such a tragedy occurs healthcare professionals need to be adequately equipped to support the parents at the time of their loss and in subsequent pregnancies. The implementation of these recommendations is crucial to reducing stillbirths across South Australia.

In closing, I want to acknowledge my parliamentary colleagues—committee Chair, Ms Olivia Savvas, member for Newland; the Hon. Lucy Hood, member for Adelaide; the Hon. David Pisoni, member for Unley; and David Basham, member for Finniss—for their unswerving professionalism and sincere empathy throughout. There were occasions when tears were shed and quiet times following a committee meeting where we had heard evidence from grieving parents.

I want to thank the committee secretariat, who were also on this journey with us—Melissa Campaniello, Dr Amy Mead, Dr Evan Smith, and Vicky from Hansard—and the medical practitioners who are there at the darkest hours of parents who experience this devastating loss. Finally, I want to thank the organisations that support bereaved parents and families, in particular Red Tree, and also acknowledge the work of the Wattle Clinic. I commend the report to the house.

The Hon. G.G. BROCK (Stuart) (11:29): First up, to all the people in the gallery I say thank you for coming in. I thank the member for Newland for bringing this up. It is a very, very emotional issue. I am sorry; I do not know if I can get through this. There are a lot of things out there in the community. This happened to me personally years ago with my late wife.

When it does happen to a family, it is absolutely traumatic: to go through the issue of knowing that you have nine months or whatever it may be with the joy of thinking you are going to have a little one come out in that period of time and then to find out that there was an issue during the pregnancy that may prevent that from occurring and not having the joy of seeing and hearing the newborn baby come through.

My eldest daughter lost her little 18 month old to drowning. That was traumatic enough. At the same time, my younger daughter became pregnant. She always wanted a son. She had two girls; she always wanted a son. Unfortunately, something happened during the pregnancy and she had to carry that baby until such time as the birth occurred. The trauma for both my girls on the anniversaries and birthdays and things like that is always there. It was the same for my late wife. We lost two children during pregnancy and there is always that fear.

The member for Flinders had trouble talking through this. It is a very emotional issue. My thoughts are with the parents and the families who are here. You always have that uncertainty and the question of what happened during that period. But, as the member for Newland indicated with her little brother, Ben, and we have with my grandson, Jett, the photographs are there, the footprints are there and everything like that, so we do have that going forward.

I do not know how the committee would have got through this, hearing all the trauma and hearing all the evidence. It must have been hard for the parents who have gone through that trauma to actually come and relive that incident to the committee. I do not know how the members of the committee, and the member for Newland as Chair, would have got through this—hearing all the evidence, being able to collate all that.

As the member for Flinders indicated, I know that it is no different to the people but when it happens in regional areas the staff and the nurses who are in the hospital have to deal with that. They are not trained on how to do that, because at the end of the day it does not happen every day. Certainly, in regional areas people know each other and it is very, very hard.

I say thank you to the committee for the recommendations. I say to all sides of politics, both state and federal: make certain we try everything we can to ensure we give every possible support to the parents involved in that journey and also to the staff and to the clinical people, to make certain that we have that support for those who go home and know that they are not going to have that particular person enjoy what we all in this chamber have done. We have all had a life. Some people just do not have the opportunity to enjoy what we have enjoyed, and we have taken that for granted.

I commend the report. I hope that we can look forward to reducing these experiences and during that period of time of pregnancy ensure that if something is going wrong we have the ability to address that. My condolences and my thoughts are with everybody here. Sorry, Mr Speaker, I do not think I can go any further.

Ms SAVVAS (Newland) (11:34): I want to thank everyone who has spoken today: the member for Torrens, as a member of our committee; the member for Flinders; and also the member for Stuart. I would particularly like to acknowledge the member for Stuart sharing his own experience. I have lost track of the number of people who I have spoken to throughout this period, some of whom I have known for years, who have shared their story, and perhaps it was a story I had not heard before. I would get texts from friends or calls from colleagues.

There is a lot to be said about the role of stigma in this discussion. Lots of people do not speak because they do not feel that they are able to. We heard time and time again from parents saying that, when family and friends do not know what to say after the loss of a little one, they choose to say nothing at all. I know how isolating that has been for so many families.

Above all things, I hope that this committee experience has been an experience where you have felt listened to and you have felt that your babies' lives were acknowledged. Those are two themes that I have found from every conversation with bereaved parents: (1) they want to be heard, and (2) they want us to acknowledge that their children existed. Above all things, I hope that we have been able to contribute to that journey for you and hopefully help you as you continue on your path of healing.

I would like to acknowledge everyone in this place who has been so supportive of my own passion project to do this work. I know there are a number of bereaved parents on both sides of the chamber, and I do want to acknowledge them. This is not easy, and it is not easy to be emotional in a place like this either, though we do have a motto in the stillbirth committee that we do not apologise for crying. We say that to our witnesses but also someone often has to say it to me sitting in the chair blubbering as someone speaks. Again, I think that goes to the stigma question. We want to be talking about these things, because we should. It is important. I think that infant loss is everyone's business. It is important to continue those conversations and for us to create an environment here in this parliament where people feel that they can have them. It is really important.

As I said, I would like to thank the members of the committee: the member for Torrens, the member for Adelaide, the member for Unley and the member for Finniss. All of the committee members showed compassion and kindness on this sensitive topic. I would also like to thank the committee staff: Melissa, who has been absolutely excellent and a real pillar of strength for me throughout this process; and Dr Amy Mead and Dr Evan Smith, who are in the top gallery. We had two research officers contribute to our report today. Evan came in towards the end of that project and took it in his stride. I am really grateful for the effort that both of you put into our report. You well and truly brought all of my feelings, thoughts and ideas to life, so I am really grateful for your work.

I would also like to thank someone who probably does not get thanked too often, and that is the wonderful Vicky from Hansard. Vicky came to me early in the piece and told me that she wanted to be the Hansard reporter on our committee. That was really special. She showed so much warmth and often had a little comment to me on the side or sent me an email with an article she had seen. She was really engaged, which may not be the traditional way for Hansard reporters recording at the back, so I want to say a big thank you to Vicky from Hansard, she was excellent.

To all of our support staff and everyone who has contributed to this work, I am incredibly grateful. I know that our parents are too, as well as Minister Picton and his office, particularly Lauris. Lauris has been an excellent support to me as we worked through the report, the recommendations and considered what the government can do moving forward. I would also like to thank my own staff in the electorate office. Often my intense passion for this project has taken over everything else that we need to get done at any given time, so I am really grateful that they have given me the freedom to do so. They have all been so sensitive and warm in their approach as well in speaking with parents and helping me through this journey, which has been an incredibly emotional one.

I am incredibly proud of what we have done here. For me, although my official role as Chair is ending, I will not stop advocating in this space while I have the great privilege to do so. Thank you so much to everyone who has contributed. I am really grateful for the opportunity to have contributed to this work in this parliament.

The SPEAKER (11:39): I would like to thank and congratulate the member for Newland and all the committee members and everyone who played a part in this important report.

Motion carried.