Monday, 26 September 2022
Private Members' Business
Pregnancy and Infant Loss Remembrance Day
That this House:
(1) notes that:
(a) Pregnancy and Infant Loss Remembrance Day is on 15 October 2022;
(b) this day is an opportunity for parents, families, friends and healthcare workers to mark their shared loss, whether through miscarriages, stillbirth, and infant death; and
(c) it is also a day that increases awareness about preventative measures to reduce perinatal mortality;
(2) acknowledges that:
(a) losing a baby at any time in pregnancy, birth or the neonatal period is devastating to families;
(b) each year, 20 to 30 percent of women who are pregnant experience a miscarriage;
(c) stillbirths and perinatal death rates are a combined 9.4 in every 1000 births, these figures have not changed for over 20 years;
(d) stillbirth occurrence is higher in Aboriginal and culturally diverse communities;
(e) these families go through further issues after experiencing such a tragic event, such as depression, post-traumatic stress disorder, changes in relationships and anxiety that may be underestimated by healthcare providers, friends and family; and
(f) further research is required to support the creation of programs that help lower the overall mortality, and to provide support to those families that have experienced the loss of a baby as well as help them overcome their trauma in a healthy and meaningful manner;
(3) commends the Government for providing $6.8 million funding to assist families dealing with the grief of stillbirth;
(4) expresses sympathy to all families who have suffered a miscarriage, a stillbirth or infant death;
(5) further commends each and every person who has supported parents and families through the loss of a baby; and
(6) thanks support groups like Red Nose, Still Aware, SANDS, and Miracle Babies for the work they do to support families.
Earlier this month, my family marked what would have been my daughter Meaghan's 30th birthday; and, in January, my son Michael's 35th. As you can tell, the passing of time hasn't diminished their loss to me or our family, and I think of them every day. But especially at times of momentous occasions, like the weddings of their siblings, it is their absence that makes the loss more acute. In the last 12 months, another 3,000 families joined us on our journey of loss of a child. They joined a club that no-one wants to be a part of and one that there are no words to describe. Yesterday there were a further nine families who got the news that their baby would not survive.
This year an estimated 100,000 pregnancies will end in miscarriage. These startling figures have not really changed in more than in 20 years. The incidence of miscarriage, stillbirth or neonatal death are much worse for Aboriginal and Torres Strait Islander women and for women of culturally and linguistically diverse backgrounds, when compared to other Australian women. Indigenous families lose their babies at a rate of up to 50 per cent higher than other Australian women, and that figure for CALD women is approximately 30 per cent.
The National Stillbirth Action and Implementation Plan recognises stillbirth as a public health issue. It was developed in response to the recommendations of the Senate Select Committee on Stillbirth Research and Education report. The plan includes short-, medium- and long-term actions with the aim to reduce stillbirth and ensure families affected by stillbirth receive respectful and supportive care. It recognised that some groups have higher rates of stillbirth and includes actions to address these equity gaps. The plan was a result of extensive consultation with relevant groups, including bereaved parents, state and territory governments, researchers, clinical experts and non-government organisations. The plan seeks to fund research and support services like Red Nose; Sands; Miracle Babies, in my community; and so many others.
Support services are vital for mum, dad, siblings and families to navigate the world after pregnancy loss and perhaps subsequent pregnancies. Talking to someone who knows what you're going through helps with healing and facing the new world beyond. When I lost my baby, I didn't know anyone else in the same position. I found Sands, and the support of volunteer counsellors did so much to help me navigate the world after the loss. Well-meaning comments like 'you'll have another baby' or 'at least you can get pregnant' did little to help how I was feeling, or my distress. What I really wanted to say was 'It was actually this baby I wanted, not another one.'
In our society, grief is difficult to talk about, especially when someone young dies. October marks International Pregnancy and Infant Loss Awareness Month, and 15 October is recognised as International Pregnancy and Infant Loss Remembrance Day. It aims to give those grieving a voice that is not always available. On 15 October, social media will be full of images of candles lit for beloved babies. This event every year gives families an important opportunity to publicly remember and reduce the stigma that often follows the loss of a baby. As with all awareness campaigns, there is encouragement to talk and recognise the loss of a baby by miscarriage, stillbirth or neonatal death. By talking, we are raising awareness and raising money to instigate research to reduce the incidence of loss and find ways to prevent families' distress into the future. I would say to anyone seeking to support a family, 'Let them talk and remember their child—that's what helps.'
I encourage and acknowledge all of the researchers, doctors, nurses and families who are contributing every day to finding the answers that will reduce the rates of loss I've discussed today. I especially recognise all the families who share their stories to make sure that their special children are not forgotten and that other families do not suffer into the future. I acknowledge medical professionals but especially my friends and family who supported me.
I rise to support the motion by the member opposite and thank her for raising this very important issue. The news of a new pregnancy can be a time for joy and celebration for parents as they prepare to welcome new life into their world. Tragically, this is not the outcome of every pregnancy, and not all babies born get to come home. Tragically, every day in Australia, 282 women experience a miscarriage. Let's think about that for just a moment—282 women every day experience a miscarriage. Every day, six babies are stillborn and two die within the first 28 days of their birth. While these statistics provide little consolation for the loss of a child, it may help to know that couples and families are not alone in this experience. Despite these staggering statistics, 74 per cent of couples report feeling unsupported in their experience.
On 15 October we recognise Pregnancy and Infant Loss Remembrance Day and acknowledge those that have lost a child through miscarriage, stillbirth or infant death. There are many organisations providing support for families, such as Red Nose, Still Aware, Sands and Miracle Babies, and I thank them for the work they do. I would also like to highlight some amazing people in my electorate of Petrie that are helping to support families in their loss journey. Karen Hollindale is a midwife who lives in North Lakes. She is the clinical director of My Midwives North Lakes, an award-winning private midwifery practice in Queensland and Victoria. Karen has been a midwife for 22 years and has worked with many expectant parents, providing midwifery continuity of care through pregnancy, birth and postnatal care, which sadly includes working with parents in their stillbirth/pregnancy loss journey. I asked Karen to describe the stillbirth and pregnancy loss journey from a practitioner's lens, and this is what she said:
Stillbirth and pregnancy is never easy. It's hard to find the words to support the families - how do you tell them that life is going to be ok when they are walking in the saddest days of their lives. We help them make choices to celebrate the life of their much-loved baby. We take on some of their sorrow - and wish we could give them back the life they have lost. We remember their baby's birthdays forever. We are always honoured to share that journey with them - despite the hurt that we share a small part of. I take a part of these families with me always - they forever hold a special place in my heart.
What an incredibly beautiful reflection of the shared story between bereaved parents and their healthcare providers.
Barbara Armstrong, from Mango Hill, is another incredible woman in the electorate of Petrie, who recently started a not-for-profit called Sweet Peanuts, after her own experience of miscarriage in 2019. Barbara found support from other bereaved parents helped her to deal with feelings of depression, grief and isolation, and she now donates care packages to local hospitals in the Moreton Bay region, to give other families the same support.
Up until recently, the local hospital in my electorate, Redcliffe Hospital, lacked dedicated private rooms for women labouring with a baby that has passed away in the womb. With the combined advocacy of the Redcliffe Hospital Auxiliary, Hand Heart Pocket and other local suppliers, a specialist care room, also known as the Jacaranda room, now provides families with a purpose-built room for stillbirth, a kitchenette with a fridge, dimmable light, darkened windows and a sofa bed to accommodate support people. The room is set to open officially at the end of October, but it has already been in use since June of this year.
In September last year the Morrison government introduced an amendment to the Fair Work Act, as part of the Sex Discrimination and Fair Work (Respect at Work) Amendment Bill, stating that employees were to be provided with two days of paid bereavement leave for parents who experience a miscarriage. I'd like to thank my former colleague the member for Ryan at the time, Julian Simmonds, for his instrumental advocacy in helping get this bill through. Policy change creates cultural change, and anyone who experiences a miscarriage, regardless of gender, deserves dedicated time off.
Lastly, my deepest sympathies go out to all who have experienced this the loss of a child. We're with you.
s TEMPLEMAN () (): We're all going to be emotional in this one. I want to thank my friend the member for Werriwa for moving this motion. It is so often those who have experienced a loss who are brave enough to shine a light on it. As we near Pregnancy and Infant Loss Remembrance Day on 15 October, I'm very pleased to be supporting this motion.
The day of 15 October is an opportunity for parents, families, friends and healthcare workers to mark their shared loss, whether through miscarriage, stillbirth or infant death. Losing a baby at any time in pregnancy, in birth or in the neonatal period is devastating for families, but each year 20 to 30 per cent of women who are pregnant experience a miscarriage. It's an enormous statistic. And stillbirths are higher in Aboriginal and culturally diverse communities. We have much work to do there. There's no doubt that further research is needed to help lower the overall mortality rate and to provide support to families who have experienced the loss of a child, as well as help them overcome their trauma in a healthy and meaningful manner.
That's why the $6.8 million of funding that the Albanese government is providing to assist families dealing with the grief of stillbirth is so important. More than $4 million of that money will go to Red Nose Australia for their Hospital to Home program, and a further $2.6 million is for stillbirth education and awareness initiatives. I want to speak a bit about Red Nose Australia and, in particular, to give a shout out to Richmond High School in my local area, who for decades have been raising significant funds on Red Nose Day.
Richmond High School students do something that isn't done anywhere else. They don red capes and red clothes, and those of us who go along put on our red clothes, and we stand side by side on the oval to create a shape. Now, when we're doing it, we don't know what the shape is. But above us is a police helicopter, and it's photographing the enormous shape that's being made. It's only when we see the photo that we know what we've helped create. This year it was a koala hanging on tightly to a big red nose. For a bit over a decade, I've been really proud to be part of this human shape being formed, standing side by side with students and teachers.
When I attended this year's event, Pat Pilgrim, who is one of the originators of the event, told me it was very much a team effort in coming up with the idea, and she talked about the very first year they decided to do it. It was all thanks to the dome-shaped assembly hall that they had; it was standing there until recently. The idea was to drape it in red to create a giant red nose to mark Red Nose Day and to fundraise. It took hundreds of red plastic strips three metres by one metre—as Pat recalls, 2,200 square metres in all—which were lifted onto the roof with cranes once it had all been heat-welded together. The plan was to just let it flow over the building. They would pull something and let it flow over the building, a bit like, as she describes it, strawberry topping. It almost went to plan. And I've been told not to talk about any of the safety rules that might have been broken in order to get that red plastic doing what it was meant to do! The event attracted attention, and in 1994 the first police flyover happened so that the image could be captured. It's become a real tradition for Richmond High. Despite a lull for COVID, it's back, with the next crop of senior students leading the way. They have raised a huge amount of money for Red Nose Australia, and we're very proud of what they do.
Also within my region I've been privileged to get to see some of the work of A Butterfly's Embrace. Naomi Smith, the president and founder of A Butterfly's Embrace, lost her son Lucas in April 2014. She wanted to help support other bereaved parents who have suffered pregnancy and infant loss. This is people who have had that experience helping other people. As the member for Werriwa said, talking can really help. Naomi wants to see change. She wants to change the little things that should not be the way they are—the things that someone who hasn't experienced a loss probably hasn't thought of. No grieving parent needs added trauma on top of the already heartbreaking situation they're forced to face. They run an informal parent group that I'd encourage anyone to go to, at Ropes Crossing.
Beyond all the statistics of pregnancy and infant loss are parents, siblings, grandparents and other loved ones who are grieving the loss of a child. This heartbreak is often private and understandably so. But it's heartening to see the increasing number of parents who are willing to talk about their experiences, in the hopes that others do not feel so alone when navigating their way through a similar experience. Recently I was contacted by northern Tasmanian woman Collette Butler, who reached out to me seeking support for an event to be held in late October to raise funds and awareness of pregnancy loss. Collette's desire to support families going through pregnancy loss is a result of losing her own daughter, Amelia, in 2020. I have asked Collette for permission to share her story, in her own words, today because, as Collette has said, all babies have a birth story and deserve to be shared with the world. She says:
On May the 26th 2020 I woke at 2am in spontaneous labour at 38weeks gestation with my first pregnancy. A pregnancy that was uncomplicated and problem free.
After arriving at the hospital my baby was found to be in the breech position which was not detected throughout my pregnancy. An emergency caesarean was called. Moments later the fetal heart rate began to drop to an alarming level. A Code blue was called. I was rushed to the theatre - my husband was taken back to the maternity ward to wait as I was put under a general anaesthetic.
At 5.50am Amelia Maree Butler was born still.
What felt like moments later I woke in the recovery room, my husband at the end of the bed & hospital staff around me. I remember looking at a nurse - asking "where is my baby". The next words changed my life forever.. "She didn't make it".
Whilst under the anaesthetic an amazing team of obstetricians, nurses & paediatricians delivered my baby girl but it was already too late. Amelia was born with her umbilical cord around her neck. The very thing that fed her life during my pregnancy, took her life. Even with CPR & intervention, Amelia was gone.
Nathan & I returned to the maternity ward - a ward that I had previously worked on as a Midwife. We were taken into a birth room I knew very well was the baby loss room. A space that women were admitted to when their babies had not survived. Amelia was waiting for us. She was perfect. Beautiful. A head of dark brown soft, silk like hair. 10 fingers, 10 toes. A perfect baby that I held in my arms, was lifeless. Nathan & I were fortunate to have the beautiful Sheridan from Heartfelt photography capture a few precious moments that would be for a life time. With the support of the wonderful midwives, we bathed Amelia, dressed her, held her - knowing too well we would have to say goodbye & I would never hold her in my arms again.
The next few days followed as such.
Instead of learning how to breastfeed my baby, - my family & I planned a funeral.
Instead of leaving the hospital with Amelia, we left with empty arms to return home to an empty nursery.
A nursery full of baby clothes, nappies, toys that would never be used by Amelia.
A private funeral was held with just Nathan & I. We stood together, watching as a very tiny coffin was lowered into the ground.
The months to follow we were faced with running into people - seeing their faces, having to explain why our baby was gone. Nights I cried myself to sleep with an empty bassinet next to me.
I was faced with returning to the hospital not just as a patient but also as a nurse. I struggled for months (still do) any time I heard a code blue, walking down certain corridors, or collecting a patient from the recovery room.
Now two & half years on I still remember that day clearly. I still cry, I still feel an emptiness I don't think will ever leave me. I imagine each day what Amelia would be like & picture the little girl she would have grown into.
Since Amelia, my husband & I have tried to give Amelia a sibling. We have since experienced 3 miscarriages. We have undergone many investigations and tests.
4 babies keeping each other company while Nathan & I learn to live without them.
Prior to my own baby loss I worked on a surgical ward as a nurse & had a portfolio & a passion in Pregnancy Loss. In this ward we cared for many families experiencing early pregnancy loss. It was my passion to make their experience as supported as possible. I strived for changes at a ward level to improve their care.
Now having experienced multiple losses myself & connecting with many others that have I am beginning to realise how common baby loss is & how little we talk about it.
I love to talk about Amelia & my little ones. For me it is a way of keeping her spirit alive.
I'd like, firstly, to thank the member for Werriwa and the other members for sharing their stories today. I must say I'm profoundly affected by this discussion, because it has dredged up, even in me, trauma from many years ago relating to pregnancy loss. What I would say is that all pregnancy losses are devastating. It is a hidden tragedy and a taboo associated with a stigma which we in this House are striving to dispel, and today it starts. The mental health effects are profound. They range from depression and anxiety to PTSD, relationship breakdown and strain, and a loss of productivity. The impacts are wide, and they reverberate through the ages. Even many years after my own pregnancy loss, I'm still so badly affected, because I remember how profoundly alone I was in that loss. I really felt that no-one could reach me.
Miscarriage is very common, as you all know. It affects at least one in five women with a known pregnancy. It is defined as occurring before 20 weeks gestation. Stillbirth, on the other hand occurs after 20 weeks. It's less common but affects six in 1,000 live births in Australia. That means that every day around six babies are stillborn. It's just devastating.
In many a case, we don't know what causes these terrible, terrible outcomes. We think that they may be due to genetic or congenital abnormalities or other types of maternal conditions—things that are known, like gestational diabetes, pre-eclampsia or smoking. But, even for those 20 to 45 per cent of families who do not know what has caused this, it is absolutely devastating. They're left not knowing, absolutely bewildered, like deer in headlights in the aftermath of this grief, which can be all-encompassing and can engulf them.
Stillbirths—like many health conditions, as you know—track with disadvantage. In my maiden speech, I talked about the social determinants of health, something that I'm very familiar with as a doctor: poor education, social isolation, poverty, racism and unemployment. The rate of stillbirth in the general population is around six to seven per 1,000, but it is much higher for Aboriginal and Torres Strait Islander people, at nine per 1,000. For women from migrant or refugee groups, it's higher still. For women living in outer regional areas, it's 7.5 per 1,000. For women in remote Australia, it's 14 per 1,000. That's double the average rate. For women younger than 20 years, again it is 14 per 1,000. It's unacceptably high.
We know that up to a third of stillbirths can be prevented if optimal care is provided. I would like to commend the previous government for their National Stillbirth Action and Implementation Plan. We have accepted all of those findings, and I look forward to seeing this actually coming to fruition. I would say that there are certain interventions that do work, and it's important we talk about them, because we can all be ambassadors for these interventions: encouraging smoking cessation—very important; improving the detection and management of impaired fetal growth; encouraging women to understand babies' movements—fetal movement is a really important but subtle sign that can be missed; and avoiding sleeping on your back, particularly in the latter stages of pregnancy, mainly because it impairs blood flow. It squashes the big vessels in the back.
All of the above can, of course, be addressed with really good antenatal care, and we have excellent antenatal care in Australia, but it's poorly accessed in a lot of parts of Australia because we are a big, wide land. We know that this is a problem particularly for First Nations women. Only 63 per cent of them in 2017 accessed antenatal care. That just seems extraordinarily low for a First World country.
I would say also that education shouldn't just stop with women; it needs to be extended to health professionals like me. I'm not an obstetrician, and it was really this talk which gave me the opportunity to do a deep dive and try to fully understand some of the factors. But we need to multiply this across the whole medical profession so that everyone understands what's going on.
I would say, finally, that we need better research to understand the causes of stillbirth, because the trauma can persist for decades. This is why it is important that we have excellent grief counselling that is of high quality and timely so that we can mitigate the impacts on families and their loved ones for years to come.
I rise to speak on this private member's motion because it acknowledges the deep and profound impact of pregnancy loss. One in five pregnancies ends in miscarriage. I speak from personal experience when I say that it is devastating. In many respects, the sense of loss never leaves you. I'm conscious that this speech is going to be cut very short, so I'm going to try and wrap it up really quickly. I want to talk about pregnancy loss from the point of view of vulnerability because, when we have a pregnancy loss, we're in a state of vulnerability. I did a thesis on the dependency, the irreversibility and unpredictability we find ourselves in—a status that is very difficult to mitigate, to resolve or to come to terms with. My thesis actually speaks about adoption choice, which is a very similar subject with many of the same pieces of data. But I think, from a personal point of view, it is possible to put this sociological framework around pregnancy loss and to come up with solutions that are hopeful, that are interdependent and that can bring some resolution to the past.