The Centre for Research Excellence in Stillbirth is in a grand heritage building within the vast Mater hospital complex in Brisbane. With verandahs on all sides, it’s fronted by palm trees and jacarandas in bloom. Aubigny was once a private house with a small synagogue – the Sisters of Mercy took it over and turned it into a hospital, one now so large it surely has its own postcode. A statue of the Virgin Mary at the entrance makes me think of the prayers and curses no doubt directed her way by suffering patients and their families for more than a century.

Stillbirth is one tragedy many people assume has been consigned to history. But the conversation I’m about to have in this lovely old building with the centre’s director, Professor Vicki Flenady, and her colleague, Dr Fran Boyle, demolishes that assumption. It is not a rare event.

My own son, Daniel, was stillborn at 39 weeks in 2001 after a normal pregnancy. No one could identify a reason for his death. The outpouring of emotion from readers around the world when I wrote about my experience here in May was overwhelming. I now know the word for stillbirth in French. The isolation associated with all baby loss is immense, but with stillbirth it comes shrouded in silence and stigma too.

These two Queensland women are like crusaders on a mission, one that is literally a matter of life and death – the tragedy of stillbirth is that everything happens in the wrong order; death comes just as everyone is expecting a new life. And very often it is avoidable.

Flenady started her career working in a labour ward and moved later to the neonatal nursery. She says of the images of babies who died: “They never leave you. It’s such a powerful experience. And that drives you on.”

When stillbirth happened to me I assumed I was an outlier. Surely no one else I knew would ever go through this. That has turned out not to be true, and the statistics bear this out.

The centre’s submission to the Senate inquiry into stillbirth research and education, whose report will be tabled in parliament today, contains this sobering fact: in Australia one in every 137 women who reaches 20 weeks of pregnancy will experience stillbirth. The Stillbirth Foundation, a charity that collaborated on this submission alongside international health institutes, individual academics, clinicians and advocates, and which funds some of the centre’s research, expresses this number more baldly: six babies a day are stillborn. It is 30 times more common than sudden infant death syndrome (Sids).

Phillipa McGuinness’s own son, Daniel, was stillborn at 39 weeks in 2001 after a normal pregnancy. No one could identify a reason for his death. Photograph: Mel Koutchavlis/Penguin Books

Not only has the number of stillbirths not dropped in 20 years, in Australia the stillbirth rate is higher than those OECD countries with the best birth outcomes. The difference isn’t marginal either – our rate is more than a third higher. These numbers represent an unfathomable amount of heartbreak. Explanations for this gap are complicated. Boyle says “we need to raise awareness of the risk factors for stillbirth and to implement effective interventions for women at increased risk”. Poor data is a factor. Maternal health outcomes for Indigenous women are especially challenging.

As Senator Kristina Keneally, whose daughter Caroline was stillborn in 1998, said in July this year, health policy “has failed these babies and their families” for too long.

Despite the statistics, there is some progress, and the two-year-old centre, funded by the National Health and Medical Research Council, is proof. In the early 2000s, even with the help of medical professionals, it was difficult to find much about stillbirth in medical journals. Boyle says: “I think there was a bit of a surge in the literature in the mid-1980s, particularly around perinatal bereavements, but then it kind of stopped. But the focus on stillbirth wasn’t there.”

Flenady describes her personal revelation when she started unpacking the data. (The definition of perinatal varies but is mainly understood as the period immediately before and after birth.) “When I first started, you know, doing some work as a research officer in perinatal mortality it was always just ‘perinatal mortality’. And as I started looking at the data more, I thought ‘that’s not perinatal mortality – they’re mostly stillborn babies’.”

Putting all baby deaths in the same category, whether they died before, immediately or weeks after birth clouded a crucial fact. She says: “It was almost a revelation when you sat down to look at all the data – the majority are stillbirths and the majority of those are before labour. It was like a lightbulb moment.”

She reflects on the silence around stillbirth. “You could say neonatal deaths were hidden as well, but they had never been hidden like stillbirths.” The difference, she says, was that whether these babies were premature or ill, they drew breath. “Mostly people had the chance to cuddle a live baby and to share that live baby.” Stillbirth is not like that.

Flenady says one of the most shocking aspects is the level of “unexplained deaths” because they are not investigated properly – the autopsy rate, she says, is 35%.

“We’ve got to be talking about pregnancy care and identifying the cause of these deaths. But even now the ABS reports that 50 or 60% of these deaths are unexplained on the death certificate.”

Boyle hypothesises that this uncertainty has been another source of stillbirth’s invisibility. It is as if many people – extended families and perhaps clinicians (though not, I can vouch, parents) – conclude that “there was no reason for it, it’s just one of those things, let’s move on”.

Flenady agrees that this kind of fatalism can be undermining: “Yes, unexplained can be interpreted as inevitable, or unable to be fixed.”

So many of the things that happen to women’s bodies – particularly mother’s bodies - are imbued with guilt, shame and a sense of predestination that it’s heartening to remember what underpins the centre’s work: science and data.

They chart many paths to reducing stillbirth. Funding more rigorous peer-reviewed research. Identifying indicators of trouble in utero that we fail to see now. Developing better foetal tests for measuring growth and placental health. Establishing protocols that give pregnant women agency. Improving training for midwives and obstetricians. Boosting policy at all levels, from continuity of care to ensuring that hospitals follow best practice in bereavement care for grieving parents. As Boyle says, “these losses are going to happen and to somehow just be in a position to try and make the worst possible situation as positive as it can possibly be. That’s why I do it.” These objectives are all part of the centre’s proposed Bundle of Care, modelled on the NHS’s Saving Babies’ Lives Care Bundle in the UK.

Awareness is a key component of the centre’s work. Flenady wants to empower pregnant women, saying: “It’s my baby, so why shouldn’t I get to know my baby? I’m an advocate for my child. I’m the caregiver for my child already. I think it sends a strong message to the care providers, to the obstetricians and the midwives.” As a former midwife said to me, pregnant women know more facts about not eating soft cheese than they know about their own babies’ movements. A campaign called Movements Matter encourages women to monitor foetal movements and to act on their concerns if something changes, without apology, even if worry strikes in the middle of the night. It’s about listening to women’s stories.

The loss of her own premature daughter, Leah, sent Boyle on her career path – researching bereavement in families suffering perinatal or neonatal loss. She was driven by the question: “What impact does this have on people’s lives?”

She is hoping to get funding for what should become a landmark longitudinal study into the effect this kind of grief has on people’s whole lives by following up families who lost babies 30 years ago. “What are the different bereavement pathways that follow such a loss?” she asks. “How do people put this into perspective?” In regard to her own experience of loss, she says: “I wouldn’t be sitting here right now if it weren’t for that”.

Why it is so hard to talk about stillbirth? It is always hard to know what to say when someone dies but many people choose to say nothing. Boyle says the fact that so many people struggle with what to say to grieving parents following stillbirth shows that “at some level they do know how utterly, absolutely devastating the experience is”.

But stillbirth awareness is growing and improved strategies for reducing it are within reach. The hundreds of submissions, including my own, that form the Senate inquiry’s report today will drive change. The existence of the CRE in Stillbirth and its research and community networks light a path that was dark for a long time. Remember the statistic about Australia’s stillbirth rate being a third above that of comparable countries? Flenady says: “That’s our goal. A 30% reduction. There’s no excuse for excess deaths in Australia. We can make a difference with what we know now.”

Phillipa McGuinness is a Sydney publisher and the author of The Year Everything Changed – 2001 (Vintage 2018).