TRANSCRIPT
Sarah Peters experienced a miscarriage in February 2024.
She found out at 11 weeks that the baby, hoped to be a late Christmas present for Sarah and her husband, had no heartbeat and had stopped growing.
The 27 year-old received the news at a routine check-up before receiving confirmation at her local Sydney hospital.
“I definitely feel as though the news could have been approached much differently. I believe I was given more of a clinical way of having received that information. They were using medical terms, they weren't really... it didn't feel very nurturing or caring.”
Despite receiving care at a private Sydney hospital and experiencing complications in a surgery to remove her foetus, Sarah says she wasn't directed to any support services.
As a First Nations woman, Sarah says she also wasn't directed to any Aboriginal health workers or community.
It wasn't until she had her son this year, that Sarah was connected with an Aboriginal community health nurse, who directed her to mental health support.
“I actually never received any follow-up from the hospital. I was never offered any guidance in terms of who I could turn to. The only reason that I was able to reach out to whoever I did in this instance, the pink elephants, was because of my boss at work who had gone through a similar situation a couple years before me. I was never guided in any sort of First Nations practice or connected with any of my community. I wasn't directed in any sort of way in relation to First Nations matters, especially relating to grief. It was quite hard. Again, I felt really alone.”
Sarah's not alone in her experience - in fact according to the Royal Australian New Zealand College of Obstetricians and Gynaecologists, or RANZCOG, around 1 in 4 pregnancies result in miscarriage.
But a new report by miscarriage support organisation Pink Elephants highlights ongoing gaps in national data on miscarriage.
It also found that 75% of women report feeling unsupported following a miscarriage.
There are discrepancies in identifying overall how many women experience miscarriage, with women's health organisation Jean Hailes suggesting the figure could actually be as high as 37%.
Pink Elephants' Chief Executive Samantha Payne says a lack of data leads to gaps in quality care.
“We know that for too long our miscarriages have not been seen because they are not counted anywhere nationally, that it's a fragmented health system, and because miscarriage can be managed by a GP which comes under a public health network and national support, or it can be managed by a hospital which comes under state and local health districts and state governments. And then there has been no overarching collection of the data, of the number of losses, the type of early pregnancy losses - because there are different types - the call, the intersectionality data, the geographic locations. And when we don't measure, we don't count, we don't resource and we don't support.”
This is particularly acute for women in regional and rural parts of Australia.
Katrina Ward, or Treen, is a Ngiyampaa woman and Chief operations manager for the Brewarrina and Walgett Aboriginal Medical Services in Far Northwest New South Wales.
She says there simply aren't enough health workers to provide a continuity of care for women in regional Australia.
“We have drive in, drive out services, fly in, fly out for the allied health. Even our midwife who comes across from Burke, it's a hundred kilometers away. She comes over every two or three weeks. So a lot, all that education and awareness coming into pregnancy, it's all lost. So then people aren't aware of what to expect and then they've also reliant on family members and other significant people in their life to help them through that process.”
Treen says women in regional areas are forced to travel hours to their nearest hospital where they're treated as a number, and often discharged prematurely due to a lack of staffing.
Medical practices around pregnancy loss can trigger intergenerational trauma connected to the Stolen Generations, as Treen describes, with many First Nations women reporting experiences of racism at hospitals.
She says the government needs to invest in rural and regional health services if they want to close the gap by 2030.
“Yeah government's starting to change attitude slightly, but it's a long-term process. And until they're very committed to investing into rural and remote health. At the end of the day these are people's lives. This is their wellbeing. And if you're going to represent the communities within government, we'll do it. Fair income, we're all individuals. We all deserve equality. It doesn't matter where we live. We all deserve the choice to have a good life. So start investing into the people who are the grassroots of Australia, and that's our First Nations people.”
Ms Payne says her organisation and other stakeholders have been working with the government to address a data gap, following their $1 million investment in the Australian Institute of Health and Welfare to improve data on miscarriage in May last year.
This was part of the government's $9.5 million funding package towards miscarriage support, which also included investment in bereavement support services, education and awareness, and an audit of Early Pregnancy Assessment Service clinics.
Ms Payne hopes to see a national database by mid next year.
“So commissioned by the Albanese government, the Australian Institute of Health and Welfare have actually just published their first review of the sexual and reproductive health framework, which is inclusive of a national pregnancy loss register. And Pink Elephants wholeheartedly supports this initiative. So that will be data that's entered by health professionals.”
The Assistant Minister for Women Rebecca White told SBS that the Australian Institute of Health and Welfare has been funded to undertake a miscarriage data scoping study to establish existing and potential data sources and options for national collection of miscarriage data, with public consultation open till November 2.
The Minister added that where possible the AIHW publishes data disaggregated for First Nations, and culturally and linguistically diverse people, and by geographic areas, and will be further considered during the development of the dataset.
But the government has not committed to including miscarriage or early pregnancy loss in the census.
Ms Payne says the Australian Bureau of Statistics rejected Pink Elephants' request in September 2023 for this data to be included in the 2026 census.
“The gap still for us is the census because there is so much validation in being able to acknowledge your own baby as part of your family within the census. And when we don't give women that option, we're basically saying that your baby doesn't matter. Your loss wasn't real and that's not okay.”
A spokesperson for the Australian Bureau of Statistics told SBS that during the topic review process for the 2026 Census, the topic of 'pregnancy loss' did not progress.
The statement said that while the area was initially considered, it did not meet the criteria to progress as it was deemed the data need is partially met by alternative data sources, such as the Australian Longitudinal Study on Women's Health.
Sarah says she would also like to see miscarriage documented in the Census, as there is currently nothing to recognise the loss with the exception of a commemorative certificate.
She would also like to see a specialised bereavement liaison attached to hospitals to connect women with the appropriate services.
“I would just like to see there be an offer for that first Nations bereavement process, the way that it's sort of ignored at the moment or just forgotten about. I think it's quite important to definitely nurture women during that really vulnerable time, but also to nurture their culture as well. I think you can't have one without the other. You definitely need to nurture their culture but also nurture their mental wellbeing.”
Dr Nisha Khot is president of the Royal Australian New Zealand College of Obstetricians, and contributed as an expert to the Pink Elephants report.
She believes national data is also important for informing prevention of miscarriages.
“Miscarriage has traditionally been one of those conditions that hasn't had as much attention paid to it. And also for many years there has been this kind of narrative that miscarriage is something we can't prevent. We can't do anything about it. So is there any point in capturing the data perhaps? But now we know that there are things that we can do and that there are certain conditions that we should look into to prevent miscarriages. And so that is also driving this need to capture the data so we can actually do something about it.”
She supports the report's recommendations, but notes that midwifery continuity of care could be expanded to include a more holistic range of health workers best suited to the individual.
“It's important to recognise that actually if somebody who is having a miscarriage needs to have, for example, a surgical procedure, then they do need to have a medical person involved in their care. And so having continuity of care, which is team-based, where there are midwives as well as doctors, providing that continuity within the team makes a lot of sense because ultimately women who need, for example, testing if they're having recurrent miscarriages, women who need surgical procedures that will need a medical person. So it makes sense to have a team continuity.”
Alongside prevention, Treen explains how comprehensive data is required to resource regional areas and upskill Aboriginal health workers.
“Often when people are away, they're faced with racism as well. You're already tarred with a negative brush and that plays into it. So that's more likely for people to remain silent. But I just feel if we've got someone who they feel, if we can build those relationships early and whether it's Aboriginal health workers or just someone with compassionate and they're able to go through the whole journey with them, then they've got someone they can turn to and then we can rely more on allied health services. But then if we can try and upskill our people on the ground as well, to be able to just have those yarns with people and feel comfortable in talking to 'em about it and then identifying who might be the best appropriate service, what that person could access some more support.”
Sarah wishes she had experienced continuity of care.
“Yeah, so I had a different midwife every, I believe, maybe eight hours. I was in hospital for three days, so I was constantly repeating my story, constantly having to explain why I was there, constantly having to meet new people and retell my story. It was like reliving the worst day of my life over and over and over again.”
She would like to see more care and support extended to women after experiencing a miscarriage.
“It's definitely more important to have that continuity of care. And then also once you're leaving the hospital, it would be nice to have someone to reach out to you and just check in and make sure that you weren't having any symptoms because that was my problem. After I had my surgery, I had to have multiple visits back to the hospital. I was having complications and I was unsure. It was only because my husband really strongly encouraged me to contact the hospital or to go back in that I did go back in.”
