Lying on the ultrasound table, seven weeks into her first pregnancy, Jade Bilardi wasn’t concerned about the light bleeding. She was already thinking ahead to when she’d take maternity leave, imagining being a mother by Mother’s Day.
Then she heard the sonographer say: “Oh, it’s just a blighted ovum.”
“I said, ‘A what?’” Bilardi says. The sonographer replied: “‘A blighted ovum… it’s just a pregnancy that started but didn’t go any further.’”
Bilardi was told she could see herself out.
“I was devastated,” she says. “I remember getting myself dressed. I remember having to walk out through the waiting room with all these beautiful pregnant bellies and I barely remember even paying. I hardly made it out the door, I was just sobbing.”
Miscarriage is the most common pregnancy complication, yet there is a lack of healthcare or social support for Australian women going through an early pregnancy loss.
A new group hopes to change that as it lobbies government for improved care for women and their families affected by miscarriage.
Called the Early Pregnancy Loss Coalition, it sees a number of organisations collaborating for the first time, including the peak professional body for obstetricians and gynaecologists (Ranzcog), the peak professional body for midwives (ACM), expert clinicians, policy researchers, economists and major miscarriage support organisations.
The three co-founders are Melanie Keep, an associate professor from the University of Sydney’s school of health sciences, Isabelle Oderberg, a journalist and author of the book Hard to Bear, and Bilardi, the co-lead of Miscarriage Australia and a social researcher at Monash University whose focus turned to miscarriage after her own experience.
The coalition aims to follow in the footsteps of the stillbirth and endometriosis lobbies, which achieved national action plans to reduce rates of the former and improve awareness and treatment of the latter.
“This sort of wholesale change doesn’t come without collaboration,” Bilardi says. “Miscarriage is still such a taboo subject. There’s still a lot of stigma around it.”
Dr Vijay Roach, the most recent former president of Ranzcog , is a member of the coalition’s policy advisory group. He says the impact of miscarriage remains “completely unrecognised and underestimated”.
“Women experiencing miscarriage do not experience kindness from the medical system. If they come into emergency bleeding, they are the last person to be seen,” Roach says. “Whereas if someone turns up to casualty with chest pain, then everything stops to look after them.
“We need to change the paradigm. It needs to be that women matter, their experiences matter, and their health matters, and miscarriage is a significant example of where we are falling short.”
One of the coalition’s first goals will be to better quantify how many women miscarriage affects, as Australia does not collect consistent data.
The Lancet medical journal’s 2021 miscarriage series recommended every country report their annual miscarriage data, similar to the reporting of stillbirth, as part of its call for a “complete rethink of the narrative around miscarriage and a comprehensive overhaul of medical care and advice offered to women who have miscarriages”.
In conjunction with health economists at the University of Melbourne, the coalition will also carry out a study into the economic cost of miscarriage.
The assistant minister for health and chair of the government’s National Women’s Health Advisory Council, Ged Kearney, welcomed the creation of the coalition and says: “The loss of a child during early pregnancy can be completely devastating and traumatic.
“Our government remains committed to improving care during and after early pregnancy loss,” Kearney says. “We have implemented a range of targeted strategies to reduce pregnancy and neonatal losses, particularly among high-risk groups.”
The antenatal and postnatal care chair of the Royal Australian College of General Practitioners, Dr Wendy Burton, says despite being common, miscarriage is under-researched.
“In an ideal world [health funding] would just be based on need, but we live in a world where sometimes you need to make a noise to get attention, and indeed, the gender discrepancy is sometimes gobsmackingly annoying,” she says.
Dr Lynore Geia, a Bwgcolman woman and professor of nursing and midwifery at Edith Cowan University, is a member of the Coalition’s policy advisory group. She says the social and emotional health effects of what is “a real grief” need to be addressed.
There is increasing pregnancy care for First Nations women but it has not extended into early pregnancy loss care, Geia says.
While there is no firm data on how many women suffer from miscarriage each year in Australia, with estimates ranging from 100,000 to 150,000, Geia says: “It’s a significant amount of people with a significant amount of grief and health matters that need to be supported and funded and researched to have better outcomes.”
