Monday, 11 September 2023
Private Members' Business
Pregnancy and Infant Loss Awareness Month
That this House:
(1) notes that:
(a) October is Pregnancy and Infant Loss Awareness Month;
(b) Sunday, 15 October 2023 marks Pregnancy and Infant Loss Remembrance Day; and
(c) this date acknowledges the shared loss experienced by parents, friends, and healthcare workers of those little ones lost too soon whether through miscarriage, stillbirth, neonatal death or any other loss;
(2) acknowledges that:
(a) there is a significant impact on families which have lost a baby;
(b) every year 110,000 Australians experience a miscarriage, more than 2,000 experience stillbirth, and almost 700 lost a baby within the first 28 days; and
(c) stillbirth occurrence is higher in Aboriginal and Culturally Diverse communities;
(3) further acknowledges all families that have experienced loss, either recently or over time; and
(4) commends the Government for providing $5.1 million to organisations to support women and families following stillbirth or miscarriage.
Thirty-six years ago, when we lost our first child, families experiencing stillbirth were unable to register the birth or the death of their child. Parents and mothers were told to go home and forget about it and to try and have another baby. In New South Wales you can now register a stillbirth and an early pregnancy loss. This makes a tangible difference to parents, ensuring that everyone recognises what has happened to them and their families.
Next month marks Pregnancy and Infant Loss Awareness Month, with 15 October being Pregnancy and Infant Loss Remembrance Day, a moment in which hundreds of thousands of families across Australia remember and mark the shared loss of their babies. The loss of a baby is heartbreaking. The sorrow, the grief, the pain that is felt and the emotions that are experienced are unique and unimaginable. It is an experience that devastates families. The thought of what could be at those times, when families are celebrating birthdays, weddings, footy grand finals and graduations, is when the loss of those who are missing is most acutely felt.
Every year 3,000 families are told that their babies will not survive, and yearly the estimate is that 100,000 women will experience miscarriage. It is estimated that 25 per cent of pregnancies end in miscarriage—an experience that is, unfortunately, too common. Despite the experiences of a quarter of those who get pregnant, it is often overlooked and diminished with well-meaning but misplaced comments. Being told, 'Don't worry, you'll have another baby,' or, 'At least you can get pregnant,' does nothing to ease the grief, because we wanted our baby and not to have to start again. Whilst these comments are well meaning, the comments are the consequence of the much broader, more systemic issues of health and women in our society, one that diminishes and fails to take seriously the experiences of women.
The other is how we collectively process and speak about loss. Speaking of grief can be seen as awkward and uncomfortable. It is an experience, though, that we all share. Feelings of loss are as valid as any other feelings. Next month families across Australia and on social media will be posting images of candles for their lost babies. It's a public acknowledgement to give families the opportunity to express their heartache and grief, which is important for some level of healing and comfort. While it doesn't erase the scars, the acknowledgement can help ease the pain. If it can reduce the stigma and encourage more people to speak about their loss, our society will be better for it. Recognition will help raise funds for research into reducing the incidence of stillbirth, miscarriage and neonatal loss.
I acknowledge the fact that miscarriages, stillbirths and neonatal deaths are much higher for Aboriginal and Torres Strait Islander women as well as women of culturally and linguistically diverse backgrounds. The perinatal mortality rate for Indigenous women between 2015 and 2019 was 15 babies per 100,000 births compared to nine per 100,000 for non-Indigenous women, and this gap has not significantly changed over a decade. We must do more and we must do better to close the gap. Every year we delay and for every measure that fails, more Indigenous babies are lost.
Infant loss is something that is incredibly personal, and it can feel isolating, but help and support are out there. In November last year, Assistant Minister Kearney announced $5.1 million in grants to organisations that provide high-quality evidence based bereavement care nationally for women and families who've experienced stillbirth or miscarriage. Support services such as SANDS, Miracle Babies and Red Nose are there to help families navigate what is an incredibly difficult journey. I know this because they were there for me when I needed their support. I want to thank them for all that they do for those who experience such a heartbreaking loss, and I want to acknowledge those who will share their stories both in this house and across Australia. It is difficult but necessary to ensure our babies are never forgotten.
I think this is possibly the third or fourth year that I have spoken on a private member's motion acknowledging Pregnancy and Infant Loss Awareness Month. Speaking on this issue holds a special place in my heart. I want to acknowledge all the mums, dads, grandparents, siblings, aunts, uncles and everyone who has been affected by the loss of a much wanted baby, and I thank the member for Werriwa for once again shining a light on this subject.
As shared already, more than 100,000 Australians are impacted by miscarriage every year, and, on average, six babies are stillborn every day and two infants pass away within 28 days of birth. When I spoke last year, I shared the story of local nurse Collette Butler, who lost her daughter Amelia at 38 weeks and four days during labour. It was a really strange few months of physically being in pain from grief and sadness but also trying to figure out, as Collette said, 'What do I do now?' Driven by a desire to support other families experiencing pregnancy and infant loss, Collette reached out to me seeking support for a fundraising event that she held in October last year to raise funds and awareness. Using the funds raised, Collette has gone on to establish the not-for-profit organisation Beyond the Rainbow and to create baby loss gift boxes to donate to grieving parents. Designed as a compliment to Bears of Hope, the boxes include items such as a baby memory journal, baby loss affirmation cards, a soft toy and a photo frame. The box also includes a resource book called A little help from Jack written by Emily Judd, whose second child, Jack, was born still at 39 weeks. Beyond the Rainbow has a mission to support families experiencing baby loss and to healthcare providers, with a focus on sustainability and sustainability of care that will result in more supportive outcomes within the healthcare setting.
While I know many bereaved parents receive excellent health care after enduring pregnancy loss, it is distressing that in Tasmania there are no bereavement units available for parents. This matter has been acknowledged by Collette herself, and Emma and Adam Deane, who recently wrote to the Tasmania government requesting additional support for bereaved parents. Emma says: 'The loss of a child can occur at any stage of pregnancy, and we hope that in the future there is a safe and inclusive space for those experiencing the trauma of loss. Is it unreasonable and unrealistic to expect that there would be a safe and inclusive space where families experiencing the loss of a child not be placed on a maternity ward with constant reminders? Would it not be reasonable to have a space specifically suited to families in the same situation as ours, where you feel safe to leave your room? A space with trauma informed clinicians who specialise in assisting families who have experienced the loss of a child, whether it be at the beginning of pregnancy or at full term?' I'd encourage health ministers from all states to put in place best practice care for parents navigating pregnancy and infant loss, to help ease the grief that they're suffering. A separate space removed from the maternity ward and with the right wraparound services would be a good place to start. I'd also like to acknowledge local small-businesses owners Amanda Reilly and Jasmine Shepherd, co-owners of the wonderful independent store adoreu baby, in Launceston. Adoreu baby is believed to be the first baby goods store in the country to have a gift range for bereaved parents. Amanda said:
I think, being inclusive as a baby store, that you need to include those people; they also had a baby.
Their initiative has been supported by Keren Ludski from Red Nose Australia, who has encouraged more baby stores to stock items related to infant loss as a way of taking away the taboo that can still follow the topic of pregnancy and infant loss. Ms Ludski says:
It's so important, equally for bereaved parents and for those friends and family of bereaved parents, to know that there is something they can buy that is meaningful and establishes that ongoing connection for the parents to that baby, and also shows that bereaved family that you're here.
My heart goes out to anyone impacted by pregnancy and infant loss, and I want to say that your baby and your experience matters. Finally, my congratulations to Collette and her partner who have recently welcomed their second child, a beautiful baby boy, Franklin.
I'd like to acknowledge my friend and colleague, the member for Werriwa. Over 36 years ago, I was also involved with a baby who died—Anne's baby. And I know that no-one could have cared for their first-born more than Anne and Larry. It's difficult to give this speech, because, as a paediatrician, I remember every baby I've looked after who's died, and they are all important. They are all important to our families and to our society, and I hope I've never been involved in a situation where I have said, 'Just move on,' because you can't. You can come to terms with it, perhaps, but you never quite understand it and you never quite forget it—and neither should you.
In Australia, we're very lucky. We have low perinatal mortality rates of under 10, as does most of the developed world. But there are countries around the world that have perinatal mortality rates sometimes two or three times greater than Australia's: countries like Afghanistan and even Pakistan, which is nuclear power that has perinatal mortality rates over 30. Some of the countries in sub-Saharan Africa have similar rates. But, in Australia, the rates have been very slow to come down past that nine or 10 per thousand births.
There are reasons for perinatal loss. I'm a really strong promoter in this parliament of the first thousand days child-health policies. That looks at how we can help people from preconception through to the second year of life to prevent developmental and physical problems in children. Part of that policy looks at how we can prevent preterm birth, which is the strongest risk factor for perinatal death, and proper nutrition, which is another factor that is related to perinatal death around the world.
There's more we could do. We can do better, looking at the genetics of perinatal death. We can do more, looking at maternal factors, such as hypertension and pre-eclampsia. There is much more we could do. That's why it is so important, on 15 October, to remember Pregnancy and Infant Loss Day and remember to not just support those families but to look at what we can do, as a government, to promote research into these most vital areas. I think there is much that the government is doing, and will do, but it needs to be done in a coordinated fashion. There is room for having a national policy on perinatal death that looks at research and appropriate management not just for the cities but for rural, regional and remote areas, because being remote is a factor in perinatal death, as is Aboriginality. We need to make sure that everyone gets equal access to support during pregnancy, and both prior and after, to make sure we can bring down those perinatal mortality rates.
It is very personal, and every family should be supported. I feel for everyone who has lost a child, particularly in these circumstances, which often, as the member for Werriwa knows, occur without any warning or explanation and are often associated with feelings of deep, deep loss that aren't appropriately managed in those first few days and afterwards. Every person who is involved in a perinatal death, be it nursing staff, be it obstetricians, be it paediatricians, be it families and the wider family as well, is affected by perinatal death and perinatal loss. It's very important that we as a society understand that that perinatal period is one of the most common risk times for a child and do more to prevent and manage it so that we can reduce our perinatal mortality, which affects the whole society.
I fully support the motion moved by Ms Stanley. I congratulate and thank all those who have spoken on this. I look forward to doing what we can as a government to make life much better for people who have experienced perinatal death.
I rise to speak on this motion, which has been brought by the member for Werriwa. I thank the member for Werriwa for her courage in speaking out about this issue and for sharing a very personal experience. I also acknowledge the previous speaker on this, the member for Macarthur, for the work he has done not only in this place but also as a doctor for many, many years looking after not just mothers but also children.
October is Pregnancy and Infant Loss Awareness Month. Sunday 15 October marks Pregnancy and Infant Loss Remembrance Day. This day acknowledges the shared loss experienced by parents, friends and health workers of those little ones lost too soon, whether through miscarriage, stillbirth, neonatal death or any other loss.
The reason I'm speaking on this is personal. I gave birth to two very premature boys, just over 17 years ago now. They were born at 27 weeks—13 weeks premature. Although our outcome was a positive one, during our journey through a number of neonatal intensive care units, including down here at the Canberra Hospital, we saw firsthand some very different outcomes. I think that anyone who has seen a parent go through the loss of a child never forgets it. Certainly we need to do all that we can as a government and as a society to support families, whether it be through a miscarriage, whether it be through a stillbirth or whether it be through some other birth trauma. That's why I support this motion, and I commend the government for providing $5.1 million to organisations to support women and their families following stillbirth or miscarriage. And, 15 October serves as a moving reminder of the universal sadness felt by parents, friends and healthcare professionals in the wake of a devastating loss of infants, however that may have occurred.
I want to speak firstly about miscarriage. Often the joy and excitement that a much hoped for pregnancy brings sadly ends in tragedy and grief for far too many Australians. I've had friends who have gone through miscarriages, and they said for them one of the worst parts was the loneliness and the isolation. Many women miscarry in the first 12 weeks of pregnancy, which is usually a time when women don't feel that they can share their joy publicly, so then they often have to go through this quietly with their partner, and there is a big sense of grief during that time.
If we look at the numbers in Australia, 110,000 Australians experience a miscarriage every year, more than 2,000 experience stillbirth and almost 700 lose a baby within the first 28 days after birth. I think this day and this month highlight the recognition of these numbers, which really do underscore the gravity of the issue.
Families undergoing these traumatic events need significant support. No amount of economic or financial support can heal their grief, but it can go some way. Workplace measures which are now in place to help parents suffering through either infant loss or pregnancy loss are of some assistance. Providing that much-needed social support and economic support is something we can do to assist these women and families.
Today serves as an important opportunity, and I also take this opportunity to acknowledge the work of organisations like Red Nose Australia, Still Aware, SANDS and Miracle Babies. These organisations serve as a key pillar of strength for bereaved parents and families and provide immeasurable guidance and support. By addressing these issues together, we prioritise support for these families. I commend the government for the $5.1 million that's being invested in these organisations.