Anne-Marie Imrie’s first pregnancy was cruising along well. She’d fallen pregnant quickly and she was healthy. As the months progressed, she started preparing – bought a pram and other baby items. And then, six and a half months in, baby Xavier’s movements started to change. She didn’t want to be a burden, so she didn’t call her doctor when she became worried in the night. When she did see her GP, she was sent to hospital, and they did a scan. That’s when she discovered Xavier had died.
“I was expecting … well, not that,” she says.
She booked in to return the next day to be induced. On 31 January 2015, Xavier was born – one of six babies a day in Australia who are born still.
For nearly two decades, Australia’s stillbirth rate has remained effectively unchanged. In 2016, it was assessed to be more than a third worse than the best-performing countries. Some 2,170 babies are stillborn each year. But that intransigence may be in the process of being disrupted as a new national program aims to slash the rate of stillbirth in late pregnancy by up to 20% by closing the gap between research and clinical practice across the country. And it aims to do so within just three years.
The national Safer Baby Bundle, launched in Canberra in October, intends to drive down Australia’s stillbirth rate with a suite of eLearning modules, workshops and a campaign for pregnant women targeting five key areas.
The program, inspired by similar initiatives in Europe and the UK, builds on established research into stillbirth causes and prevention and emphasises support for women to cease smoking, encouraging pregnant women to sleep on their side and increasing expectant mothers’ awareness of decreased foetal movements. For clinicians, the program aims to improve the way irregular foetal growth is monitored and managed, and how decisions are made regarding the timing of birth for higher-risk pregnancies.
Imrie, who is an ambassador for the Stillbirth Foundation, says that a program like this validates the trauma of experiences like hers, and treats it as a problem which needs addressing. It shines a light on those experiences, and on the children, like Xavier, who were lost.
“Many stillbirths are preventable,” says Prof Vicki Flenady of the Stillbirth Centre for Research Excellence, which is leading the rollout of the Safer Baby Bundle nationally. “We can prevent this dreadful tragedy.” The centre expects the program will be able to prevent up to 200 stillbirths after 28 weeks gestation each year.
‘A private tragedy, not a public health problem’
The lack of movement on Australia’s stillbirth rate despite the available research and devastation it wrecks on those impacted has caused consternation and despair among researchers, advocates and families.
“A lack of understanding and a lot of misperception about stillbirth are really at the core of the problem,” says Flenady. “We’ve seen a reduction in newborn deaths and a lot of other adverse outcomes for mothers and newborn babies. But we haven’t seen the reduction in stillbirth.
“We think it’s really the result of a reluctance to confront this tragedy. Pregnancy is supposed to be this wonderful happy time and everyone comes home with a baby, but all of a sudden it turns to tragedy, so it’s not spoken about.”
Labor senator Kristina Keneally, who led a Senate select committee into stillbirths which preceded the development of the Safer Baby Bundle, says a sense of fatalism and stigma has pervaded the treatment of infant loss as a medical issue.
“We have viewed stillbirth as a private tragedy, not a public health problem,” she says. “We have had the view that there is nothing we can do to prevent stillbirth. It just happens.”
The new program, she says, is a “giant step forward for Australian healthcare” in equipping clinicians with the information, and vocabulary, for talking to expectant families about stillbirth prevention.
Imrie says removing the fatalism and taboo around stillbirth is important both for pregnant women, and for families who have suffered loss.
“I just want the subject of stillbirth to be more mainstream. It has been so hidden, so taboo, that when it does happen to people, they’re extremely shocked. The perception of stillbirth is that it was something that happened historically, and it doesn’t happen these days,” she says.
“I think women are capable of handling this information in pregnancy, so they can be educated about prevention measures.”
The Safer Baby Bundle is currently in its first stage of implementation. Victoria, New South Wales and Queensland have developed their own versions. Other states will come online in stage two, later this year, which will build in possible changes on the basis of findings from the initial rollout.
So far, about 3,700 clinicians have signed up to do the courses. Flenady says that it is too early for any results but early signs are encouraging.
Prof Michael Nicholl is leading the rollout of the program in NSW and says it has been embraced by midwives. He is working to bring more senior medical professionals and GPs on board. The program in NSW is initially being implemented in four local health districts which have a larger proportion of high-risk pregnancies, enabling the districts to tailor the messages for their own communities.
“What we have lacked in this space for a long time is a coordinated approach to the problem, and one of the things I hope we can embed in this work is a much more coordinated, and locally targeted, approach.”
Every stillbirth must be investigated
Nicholl says that the goal of preventing one in five late stillbirths is achievable.
Still, there are yet more changes which could make a significant impact not only on stillbirth rates but to the families who have suffered a stillborn baby.
“I can’t emphasise enough how significant the Safer Baby Bundle is for Australia,” says Keneally. “However, the Safer Baby Bundle alone will not be enough. Where countries have made massive reductions in stillbirth it is as a result of investigating every stillbirth and feeding the learnings from that back into the health system.”
Flenady says continuity of care – that is, a pregnant woman seeing the same midwife, GP or obstetrician throughout the course of her pregnancy – is key to improving outcomes, “but these things take a little more time”.
Critical, say Flenady and Nicholl, is ensuring all stillbirths are investigated and the data about the causes of these deaths is standardised. At present, the rate of stillbirth autopsy is lower than recommended and a significant proportion of stillbirth deaths are recorded as “causes unknown”.
“We have a national guideline on care after stillbirth and neonatal deaths,” Flenady says. “We have had that for many years, and it says that all services should conduct an audit and look at the contributing factors, but the reality is that it has been a bit haphazard.
“We need to improve that. And we need a consistent approach so we can compare apples with apples across the country and combine our data to determine where we really need to focus our attention.”
Keneally says that determining the cause of a stillbirth is not just important for the purpose of public health interventions but for individual families who hope to one day fall pregnant again. She says that stillbirths are often the last priority for autopsies, but that in her own experience of having a stillborn daughter, “it was absolutely crucial in a subsequent pregnancy to know how to minimise risk”.
A draft national stillbirth action and implementation plan released in February identifies both developing a nationally consistent stillbirth auditing system, and supporting continuity of care, as goals that will have a substantial impact on further driving down Australia’s stillbirth rates.
“It’s quite remarkable,” says Flenady, that a series of relatively small interventions could make such a significant difference in terms of the loss of life. “But we’re here now, and I think it’s going to make a big difference.”
Imrie had a second son after Xavier, and is pregnant now with her third. She elected not to have a full autopsy of Xavier, and so his cause of death was determined as “inconclusive”. She sometimes wonders, had the Safer Baby Bundle been around when she was pregnant with Xavier, whether things may have turned out differently for her. “But, you know, that can’t be changed. At least I can be a part of it and be a voice for my son and other families.”