Isabelle Oderberg's first pregnancy loss did not count towards the number of miscarriages recorded in Australia that year. In fact, none of her seven miscarriages over the years, or any other woman's miscarriages, were counted in that way.
The number of miscarriages experienced in Australia each year is simply an estimate.
But there's hope that could change after the included a $9.5 million funding commitment dedicated to miscarriage. That includes money for bereavement support services grants, education and awareness programs, and improved data collection.
Oderbeg is the chair of the Early Pregnancy Loss Coalition (EPLC). Following the release of the federal budget, she took to X (formerly Twitter) to hail what she said was an Australian first — a label that has since been confirmed by the government.
"For the first time in Australian history, miscarriage has dedicated funding in a federal budget. Funding for educational resources, frontline support services, and a scoping study to collect a national dataset," she said.
"Yes. I'm crying."
Oderberg told SBS News she hopes the funding could be a step towards data collection that would provide a clearer picture of miscarriage in this country as well as improved care for those who experience it.
It's estimated that each year somewhere between 100,000 and 150,000 Australian families experience miscarriage (the loss of a pregnancy before the 20-week mark) but those numbers are not based on a tally of official health records.
"It's based on studies from other countries that show the miscarriage rate and then looking at the number of live births in Australia and doing a kind of a 'guess-timate' based on the number of live births and the likely miscarriage rate," Oderberg told SBS News.
"There's a lot of debate over what the miscarriage rate is, estimates go anywhere from one, in three pregnancies to one in five," she said.
The EPLC was formed last year and is made up of Australian organisations representing professional bodies that see a need for improved care and support for people affected by early miscarriage.
Oderberg said the budgetary commitment marked the first time any Australian federal government had pledged money to miscarriage "untied to any other issue".
"No one wants to take away from any of the other issues that have rightly needed funding over a long period of time, but certainly, this issue has been overlooked," she said.
"That's because of a combination of it being very culturally complicated and to a large degree being subjected to certain taboos and silences."
While pregnancy loss after 20 weeks is considered to be stillbirth and can be registered, few resources have focused specifically on how to support and count those miscarriages that take place before that time frame. Source: Getty / Anastasiia Krivenok
Oderberg said such a study would help to create an understanding of the best way to calculate the rate of miscarriage in Australia.
"It's not necessarily a straightforward proposition because miscarriage doesn't just have one touch point, people miscarry at home, people miscarry at hospitals, people miscarry and never tell anyone because there may be an element of shame around it," she said.
"We need to work out what would be included, what wouldn't be included, but also, how do we capture all the different touch points as well.
"Then within the hospital setting, there's also a lot of obfuscation of data because abortion and miscarriage are often wrapped up together with similar codings and medical terminology, so how do we detangle that to get an accurate number?"
state "there is also a lack of rigorous data collection on miscarriage, while gender bias in the healthcare system and a lack of targeted services mean that many women are not receiving adequate care during and after miscarriage".
"Delivering a public education program will help start a public conversation about miscarriage and better support women and their families to process this loss and grief," it says.
It's also hoped the program will educate health professionals so they can provide more sensitive support for women and families experiencing miscarriage and early pregnancy loss.
Isabelle Oderberg, chair of the EPLC, is a journalist and a mother of two whose experience of pregnancy loss drove her to write a book on the topic. Source: Supplied
She said while deciding how to best collect data on miscarriages in Australia was a complex matter, some improvements could easily be made immediately to improve the care and experience of women.
Oderberg said these ranged from health professionals better informing women of the options they have for managing their pregnancy loss, to simply the provision of more appropriate spaces in health care facilities.
She recalled the first time she lost a pregnancy and had to wait in a waiting room with expectant mothers while miscarrying.
"I was sitting in a waiting room with other pregnant women to be scanned while I was bleeding and, and thinking, 'I'm losing my baby and they're all happily pregnant.' That was really hard and they were all looking at me and they were clearly traumatised by what was happening to me."
Following another of her pregnancy losses Oderberg said she asked an ultrasonologist if she could give some feedback.
"I said: 'Do you get people coming in here with threatened miscarriage very much?' And he said: 'Yes' and I said: 'Have you ever thought about having a separate waiting area for those people?' And he looked at me and he said: 'Why would I do that?'"
Oderberg said while more funding was needed to provide the care, research, and support this issue demanded, what had come from the federal budget was a "first step".
"It gives us all hope that in the not too distant future, people who grieve this loss will find more support, better care and understanding, and improved medical treatment when compared to what many of us have experienced in the past," she said.
Health and Aged Care Assistant Minister Ged Kearney said the funding was "an Australian first".
"Having a miscarriage can be one of the darkest and most traumatising moments of a woman’s life. It compounds the tragedy if she does not receive empathetic care, or is isolated and lonely as she processes this loss," she said in a statement.
"So many women have spoken up about their harrowing experiences of miscarriage. It’s time we listen. It’s time we act. It’s time we shine a spotlight on miscarriage."
