Action plan on stillbirths
Sofia* is struggling. “It’s really hard to talk about this,” she admits.
Two years ago, she was pregnant with her first child – it was a very “easygoing” pregnancy. But at 32 weeks, she started to feel unwell.
“It just felt like something wasn’t right,” she tells The Saturday Paper.
She contacted the Royal Women’s Hospital in Melbourne and described the “contraction-type things” she was experiencing. They told her it was Braxton Hicks contractions – known medically as false contractions. The next day, she visited her GP, looking for reassurance.
“I was actually crying – I just didn’t feel right,” she says. “My baby was quite active and there was a bit of a pattern with how I felt her throughout the day and that had changed. She slowed down [in her movements] a lot.”
After checking the baby’s heartrate, the doctor reassured her everything was fine. They measured her stomach, which appeared smaller than it should have been at 32 weeks, and booked her in for a scan the following day. Then they told her to go home. But the next morning she couldn’t feel any movement.
“I knew something was wrong and I took myself to the hospital,” she says. Her baby would be delivered stillborn. “That’s how I lost Yazmin. I birthed her, and I spent two special days with her. She was perfect.”
Sofia says that during her pregnancy she was never briefed about stillbirths. “Miscarriage is mentioned but stillbirths weren’t. It was quite a shock.”
But stillbirths remain extremely common in Australia. In December, a landmark report was tabled in federal parliament that found six babies are stillborn every day. Despite advances in medical research and technology, the rate of stillbirths has not declined in Australia in more than 20 years.
The report was a result of an eight-month senate inquiry, which aimed to improve education and research about stillbirths in Australia. It received close to 300 submissions and held six public hearings across the country.
Between 2016 and 2020, the inquiry found stillbirths will directly and indirectly cost the economy $681 million. It also examined the risk factors – from maternal health factors to geographical location and race.
Committee chair Malarndirri McCarthy, Labor senator for the Northern Territory, tabled the report in a coolamon – a wooden vessel traditionally used by Indigenous families to carry food and babies.
“The fact that we lose six babies to stillbirth is a statistic that is quite shocking in itself. Certainly, for First Nations babies, the number is much higher,” McCarthy says. “Most people who gave evidence were generally families who shared their own traumatic experience.”
McCarthy describes a moment during the inquiry that stood out for her, when she learnt that some unclaimed stillborn babies were still in the mortuary in a hospital in Katherine after nearly six years. McCarthy asked the midwife giving testimony why that was the case.
“They couldn’t give an answer to that other than to give opinions – it was really anecdotal,” she says.
In response to the findings, the federal government announced a national roundtable to address the rate of stillbirth in Australia and $7.2 million for medical research and education programs.
But months after the report’s release, many in the sector argue the health of Indigenous and migrant women should be prioritised in the response, if there is to be a reduction in the rate of preventable stillbirths.
The report found that for Aboriginal and Torres Strait Islander women, the rate of stillbirths is double that of non-Indigenous women.
Marni Tuala is the president of the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives. She wasn’t surprised by the high rates of stillbirth for Aboriginal and Torres Strait Islander women.
“We’ve been aware for a long time about the disparities that face our communities,” she says. “Our system remains culturally unsafe. We’re not best supporting our women and our families and babies within those systems. If the systems are culturally unsafe, then our women are less likely to access those services. That’s why are rates are higher.”
She argues that the government is prioritising the wrong issues.
“For Aboriginal and Torres Strait Islander communities, we know the disparities that face us – that our babies are more likely to be low birth weight or more likely to be born premature. We also know that more than a third of stillbirths occurring in Aboriginal and Torres Strait Islander communities are because of premature birth.”
Dr Adele Murdolo is the executive director of the Multicultural Centre for Women’s Health, a national community-based organisation aimed at improving the health outcomes of migrant women.
She says women born overseas experience nearly 35 per cent of stillbirths in Australia.
“There are some groups within that that have a higher rate. The general rate for women in Australia is seven per 1000 births will be a stillbirth. But there are some women born in South Asia, the Pacific, Africa and the Middle East with rates at around nine per 1000 births.”
Murdolo says a range of factors contribute to the disproportionately higher risk for women from non-English-speaking backgrounds.
“We know that migrant women have much later presentation to antenatal care and they also have antenatal care less often and that’s a real concern because there are a lot of things that can be done during that antenatal period that can help risk for women,” she says.
Murdolo says cost is a contributing factor for many of these women as many are on temporary visas and rely on private health insurance. Other women have access to Medicare but can’t access bulk-billing GPs, she says, so they may not be able to afford to pay the gap.
Structural racism is also a barrier for women from non-English-speaking backgrounds.
“Women don’t always get the service that they need when they do approach healthcare, so they might not get the information they need,” Murdolo says. “They may not be provided with the options. They often don’t get access to interpreters and there’s a real inability to communicate; they get stereotyped,”
Marni Tuala agrees.
“There’s a lack of truth-telling in this country and that’s where it all begins. There’s a lack of acknowledgment of past practice and how that impacts on the health of our people today and the systemic issues that all our systems have been formulated on these ideals of the dominant culture,” she says. “It doesn’t work with our mob, the evidence is there that it doesn’t work.”
Many of the report’s recommendations include training and education to help in the prevention of stillbirths, investigations into the cause of stillbirths and support for affected families. Tuala believes increasing the number of Indigenous nurses and midwives will help reduce the rate of stillbirths in Aboriginal and Torres Strait Islander communities.
“There’s only 230 Aboriginal and Torres Strait Islanders midwives in the country, and we know if we are to meet parity and take into account the higher birth rates in our community, we need around 1100 Aboriginal and Torres Strait Islander midwives today to meet parity. We’ve fallen quite short of the mark,” she says.
Murdolo is calling for an increase in access to antenatal services for migrant and refugee women.
Last month, the federal government convened a national roundtable to address the rate of stillbirth in what it says is the first step in producing a National Stillbirth Action Plan.
In a statement to The Saturday Paper, a spokesperson for the Department of Health says Health Minister Greg Hunt has moved to raise this issue with his state and territory counterparts to seek their agreement and support for the preparation of the plan. It expects the plan will include strategies that aim to specifically address the higher stillbirth rates among particular parts of the Australian population, including Aboriginal and Torres Strait Islanders and particular migrant groups.
Committee chair Malarndirri McCarthy says the inquiry was a first step in addressing an issue that many families have suffered with in silence.
“If that means that in each of those states and territories that they must increase the number of First Nations nurses and midwives, women from non-English backgrounds, then that’s what they should do. The senate inquiry was to bring attention to the country an issue that has forever been silent, and hopefully from now forward it will never remain silent,” she says.
For Sofia, talking about the memories of her baby is important in breaking that silence.
“My instant reaction after losing Yazmin was losing her memory. You worry about their memory being lost. That’s really important for grieving mums.”
SANDS Miscarriage, stillbirth and newborn death support 1300 072 637
* Names have been changed.
This article was first published in the print edition of The Saturday Paper on Mar 9, 2019 as "Losing hope".
A free press is one you pay for. In the short term, the economic fallout from coronavirus has taken about a third of our revenue. We will survive this crisis, but we need the support of readers. Now is the time to subscribe.