This article contains references to early pregnancy loss.
Sarah Peters hoped her baby would be a late Christmas present for her and her husband. But at 11 weeks, she found out that the baby had no heartbeat and stopped growing.
The 27-year-old was told she had a miscarriage at a routine check-up before receiving confirmation at her local Sydney hospital. In an already difficult time, she says a lack of support from the hospital made her feel "alone".
Despite receiving care at a private Sydney hospital and experiencing complications in a surgery to remove her foetus, Peters says she wasn't directed to any support services, mental health support, or grief counselling.
As a First Nations woman, she says she also wasn't connected with any Aboriginal health workers or community.
"I never received any follow-up from the hospital. I was never offered any guidance in terms of who I could turn to," Sarah told SBS.
"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."
She also said the news was delivered to her in a "clinical" way that "didn't feel very nurturing or caring".
"It was quite hard. I felt really alone," she said.
Sarah wishes she had experienced continuity of care, saying inadequate resourcing meant she experienced ongoing trauma.
"I had a different midwife every eight hours. I was in the 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," she said.
"It was like reliving the worst day of my life over and over and over again."
How many Australians have had a miscarriage?
A new whitepaper from miscarriage support organisation Pink Elephants Support Network found 75 per cent of women reported feeling unsupported through their miscarriage experience. Sixty-eight per cent received no support when told their pregnancy had ended.
The report said one in four pregnancies end in miscarriage, but noted research from Jean Hailes and the National Women's Health Survey which suggests that rate might be as high as 37 per cent.
Pink Elephants' chief executive, Samantha Payne, estimates the real numbers to be much higher — but says it's difficult to capture the true scope of miscarriage as there's no national data collection on it.
"For too long, our miscarriages have not been seen because they are not counted anywhere nationally," she told SBS. "It's a fragmented health system."
The absence of national data means it's difficult to understand exactly who's affected most by it — how many losses there have been, what type of miscarriages they were, what intersectional groups are affected, and where they're located.
Change advocates argue this means resources might not be getting to where they're needed most.
"When we don't measure, we don't count, we don't resource, and we don't support," Payne said.
The report offers five recommendations — including the establishment of national data collection systems, early pregnancy loss care standards, continuity of care, and culturally-safe care.
First Nations women 'left behind'
The sting is particularly acute for women in regional and rural parts of Australia, where pain is compounded by both geographical and financial barriers.
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.
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.
"Often after a miscarriage, they may have to go to a larger regional centre to have a D&C [surgery to remove the foetus], so that's another layer of trauma on the individual," she said.
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Treen says that in regional areas, continuity of care is particularly significant and it's especially so for First Nations communities.
"Cultural protocols come into play as well — they need to feel culturally safe and listened to … so that if the mother says something's not quite right, it's not dismissed."
But she says there simply isn't enough resourcing allocated in regional Australia.
She says some of her staff — who live as far as 100 kilometres away — operate on a "fly-in, fly-out" basis, which makes continuity of care and education difficult. Because of this, people are often "left to their own devices" and need to turn to family members for support, rather than health workers.
Medical practices around pregnancy loss can also trigger intergenerational trauma connected to the Stolen Generations, as Treen described, with many First Nations women reporting experiences of racism at hospitals. "That makes it more likely for people to remain silent," she said.
"When people come back, they get left behind … particularly young girls. There are too many who will just go along with their normal day. They'll suffer in silence with their grief and put up that brave front.
"Shame comes into it as well — it still plays a very prominent role."
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. Source: Getty / Thomas Barwick
'Nothing is given without adequate data'
Dr Nisha Khot is the president of the Royal Australian New Zealand College of Obstetricians (RANZCOG), and contributed as an expert to the Pink Elephants report. She believes national data is also important for informing the prevention of miscarriages.
"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?" Khot said.
"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 says the data gap also affects how services are allocated.
"We can't have services if we don't know what the need for services is," she said.
"Without the data, it's really difficult to know what sort of early pregnancy services we should set up, what we should expect in terms of numbers, and how we should resource it."
Those in rural, migrant and First Nations communities are the most vulnerable to this funding gap, she says.
On the ground, a lack of data means fewer resources for regional and First Nations women, says Treen.
"Nothing is given in the way of funding unless they've got adequate data to prove that there's a need for this particular service," she said. "Unless you've got that data there to say there's a deficit, they're not even going to look at it."
"It's one way that we can get more services out in the bush and have people on the ground in these small areas."
She says that while the government has started to "change its attitude slightly", more investment in rural and remote health needs to be done if it wants to close the gap by 2030.
"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," she said. "So start investing in the people who are the grassroots of Australia — and that's our First Nations people."
Funding welcomed, but key 'gaps' remain
Government funding towards miscarriage support has increased, but Payne says there are still gaps.
The 2024-25 Budget invested $9.5 million in funding towards miscarriage support, including investment in bereavement support services, education and awareness, and an audit of early pregnancy assessment service clinics.
The Pink Elephant's Support Network received $4 million while $1 million was allocated to the Australian Institute of Health and Welfare (AIHW) to scope the establishment of a national collection of miscarriage data.
The work is part of the draft sexual and reproductive health monitoring framework and is open for public consultation until 2 November.
"Where possible, the AIHW publishes data disaggregated for First Nations, and culturally and linguistically diverse people, and by geographic areas. This will be further considered during the development of the dataset," Assistant Minister for Women, Rebecca White, told SBS News.
Payne commends the funding and the plans for a national pregnancy loss register, but says it will "take time", though she hopes to see a national database by mid-next year.
"We're excited to see that after years of calling for more data to understand it better, so we can support women better and address false narratives that exist … we're grateful to see that," Payne said.
"That will be data that's entered by health professionals, but we still see another gap — the census."
Calls for 'validation' in the census
The 2026 Census will not include a question on miscarriage or early pregnancy loss.
A spokesperson for the Australian Bureau of Statistics told SBS that during the "topic of 'pregnancy loss' did not progress".
"The topic was considered initially in the first phase of the 2026 Census topic consultation process, but it did not meet the criteria to progress to the second phase of consultation as it was deemed the data need is partially met by alternative data sources, such as the Australian Longitudinal Study on Women's Health," an ABS spokesperson said.
Payne says the Australian Bureau of Statistics rejected Pink Elephants' request in September 2023 for this data to be included in the 2026 census. She plans on requesting it again for the next census.
Pink Elephants say the rejection "exemplifies how institutional decisions render [early pregnancy loss] statistically invisible".
For her, the Census is less about data collection and more about validating the pain that comes with early pregnancy loss.
"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," she said.
"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."
Peters believes a question around early pregnancy loss should be included in the census.
"At the present time, there is nothing to recognise that our babies have been lost, with the exception of a commemorative certificate," she said.
Readers seeking support can ring Lifeline crisis support on 13 11 14 or text 0477 13 11 14, visit lifeline.org.au or find an Aboriginal Medical Service here. Resources for young Aboriginal and Torres Strait Islanders can be found at Headspace: Yarn Safe.
The Pink Elephants Pregnancy Loss Helpline can be reached by calling 1300 726 306. It operates Monday to Friday from 9am to 7:30pm and Saturdays and public holidays from 9am to 4pm.
