The book on miscarriage the Victorian Women’s Trust knew had to be written

Dee Rudebeck, News and Storytelling Advisor Fri, 22 Mar 2024 Estimated reading times: 4 minutes

Around 285 pregnancies result in miscarriage each day in Australia – or around one every five minutes. It’s an extraordinary figure and yet the most common complication associated with childbirth is shrouded in silence, and unfortunately shame, for many of the thousands of affected families. Author Isabelle Oderberg has set out to change some of the perceptions around this all-too-common experience in her book Hard to Bear, the writing of which was supported by philanthropy.

This story was first published in the hardcopy edition of Inspiring Stories of Giving volume 1 in October 2023.

After experiencing seven miscarriages along the path to her two live births, Isy knew that she wanted to write about the subject that affects 150,000 Australians a year. A journalist, she first envisioned it would be a feature article or a series of articles – writing a book was not on her to-do list amid her busy life. “But the more I started digging, the more I realised that this is so much bigger,” she says.

After writing a few chapters, she took them to publishers, where she received a mixed reaction. “The majority was positive but there were some really unsupportive comments made. Understanding the fear around this subject was an important part of the journey,” she says. Then it went to a bidding auction where several publishers wanted the rights, which were taken up by Ultimo Press.

In the meantime, Isy had started applying for grants to fund her living expenses, including childcare, so she could focus on writing the book. She was put in contact with the Victorian Women’s Trust and Executive Director Mary Crooks AO. “We had one meeting and Mary was so enthusiastic that the book had to be written. She believed that it was a such good project and vitally important. She took the case to her trustees and they decided to make a Targeted Impact Grant to the Jean Hailes Foundation in order to support me writing the book,” says Isy.

“The book would have taken me 10 years to write otherwise, while working in a job four or five days a week. I conducted hundreds of interviews and spent hours and hours in libraries. It’s a very time-consuming process.

“It wasn’t just money though. The Victorian Women’s Trust offered me office space and gave me introductions within the sector. It was just magnificent. Writing can be an isolating experience, especially when you’re reliving your own trauma, but also taking on the trauma of the people you are interviewing. So, knowing that they were there to support me was really precious beyond the money,” she says.

Mary says: “The Women’s Trust has a long track record in funding research and advocacy that deals with tough and oftentimes unglamorous issues. We were very proud to find a way to support this groundbreaking work of Isy’s.”

The book is about sharing experiences and diminishing the taboo about miscarriage, but Isy also had clear sights set on promoting systems change in the medical profession and IVF sector. The first issue to focus on was the silence – where had it come from?

“It was a really complicated but fascinating answer that led me right back into the history of the medical profession and a holotype, because it wasn’t always like this. There was actually a time when miscarriage was seen as a natural part of the reproductive and contraceptive cycle,” she says. “Unfortunately, miscarriage sits at the intersection between two things that we are really bad at talking about as a society – women’s health and grief.”

Isy also found that data on miscarriage is not collected in Australia. “We can’t build a qualified public health response if you don’t know what’s going on. We know that across the world there are various environmental factors affecting fertility in different communities, so it was frightening to me that we didn’t have any oversight of that here as a society.

“It’s really hard to make an argument for resourcing or systems changes policies without data,” she says.

Another key area of focus was equitable access to health care. Isy’s research found that First Nations women and others from marginalised groups faced a raft of barriers when trying to access culturally sensitive maternity care.

Isy has now co-founded a group, called the Early Pregnancy Loss Coalition, of people who want to see change in this area, including organisations like Red Nose and Pink Elephants. “The book,” she says, “forms a sort of roadmap to what we want to see change. Firstly, it’s that miscarriage data is collected, secondly that the language around miscarriage shifts and finally, we want more money to go into research and support services for all.

“It sounds like a big shopping list, but there’s a lot of work to be done.”