Wed. Dec 1st, 2021

WARNING: The content may be unsettling to some readers.

Alicia Mitchell and her husband have three children: two who live with them in the family home in Sydney, and Isabella who “lives in the stars”. On Mother’s Day, all three children’s names are signed on cards, and the family marks three children’s birthdays each year. They refer to themselves as a family of five.

But the couple never had the chance to meet Isabella, who was born stillborn at 33 weeks in May 2016. The shock loss of their daughter has left the family with an endless stream of unanswered questions about what could have been.

“Would she have straight hair or curly hair, would she have blue eyes or brown eyes, how would her personality be,” asks Alicia, 39,. “It’s not only mourning the death of a baby, it also provides a lifetime of ambitions and stories and milestones.”

Isabella – who would now be five years old – was one of around 2,000 babies stillborn in Australia each year. This equates to about six babies a day, according to figures from the Australian Institute of Health and Welfare, a figure that has been stable for the past two decades.

It is even more common for native parents who are twice as likely to experience stillbirth compared to their non-native counterparts.

On Friday, pregnancy and infant staff, Alicia told ABC News that her daughter’s death from fetal maternal bleeding was “completely unexpected.” Alicia received a pure health bill during a routine checkup, but three days later she was told that her daughter’s heartbeat could not be found.

It was only when Alicia noticed what she describes as a “silence” that she knew something was wrong.

“Life in that moment just stalled, it stopped,” she says. “Not a day goes by that I do not think of her and feel her presence.”

Push to action

Australia is in the midst of a push to recognize stillbirths and other deaths from newborns as a public health problem.

Years of advocacy and a Senate inquiry culminated in December last year with the release of the National Stillbirth Action and Implementation Plan, which hopes to reduce the number of stillbirths by 20 percent over the next four years.

Two children and a woman are standing in front of a hedge.
Alicia with her children Mila and William.(Delivered by: Alicia Mitchell)

The strategy recognizes that sub-standard care plays a role in up to 50 percent of stillbirths, while between 20 and 30 percent of deaths could be prevented with optimal medical care.

In response, the Stillbirth Center for Research Excellence (Stillbirth CRE) has launched a national educational program called the Safer Baby Bundle – a suite of online learning modules for nurses working with expectant parents.

The program covers five key areas that researchers hope can reduce late-birth stillbirths, which account for about a third of all cases by 2023. If successful, the program could save 200 babies each year.

These focus areas include support for pregnant women to quit smoking, improved screening and monitoring of fetal growth, increased awareness of normal or abnormal fetal movement, information on safe sleeping positions, and better decision-making about the correct time of birth.

In Victoria, which was the first state to launch the program, co-director of the research center David Ellwood says that in the long run, stillbirth rates have already fallen below target levels.

But better education and information can only go so far. The majority of stillbirths cannot be prevented due to congenital anomalies affecting the vital organs of the babies, premature birth and maternal health conditions as well as other unknown factors.

“We certainly know what causes some stillbirths, but there are still a significant number of stillbirths, especially in late pregnancy, where the cause is essentially unexplained,” says Professor Ellwood.

He says he would like to see more resources aimed at autopsies and investigations into why a baby was stillborn. “Often, funds explain not being examined,” he says, “families have a right to know why their babies are dead.”

A support system

While reducing the number of preventable stillbirths is a piece of the puzzle, the other major challenge for the healthcare system is to ensure that bereaved parents are supported through the process.

“Birth is something that will always be with us,” says Professor Ellwood, “so the focus of our work over the next five years will be more on ensuring that women and families experiencing stillbirth get the best possible care when it occurs – but also later and into the next pregnancy. “

Alicia says she was fortunate to be assigned a support staff member through the hospital who was with her through delivery and the early stages of grief. She remembers the support staff member who organized to have a photographer visit the hospital and take pictures of Isabella, who is now lovingly displayed in the family home.

The support staff member also helped with funeral planning and connected the family with support networks where they could go to talk about their experience.

However, not all surviving parents receive the same care.

“What we want to see is a consistent approach to providing the best possible care under the worst possible circumstances,” said Associate Professor Fran Boyle, a health researcher leading the Stillbirth CRE’s Care after Loss program.

The organization has developed clinical guidelines that include 49 recommendations for hospitals when caring for parents who have experienced a stillbirth. They range from avoiding the word “fetus” when describing the baby, to giving time for skin-to-skin contact after birth.

“People have a lot of misconceptions about stillbirth and the loss of children, it can be an invisible loss,” says Professor Boyle.

“We do not talk about it, sometimes for fear of disturbing parents, or people may think it is better to move on and think about the future.

Professor Boyle says it is often very different from what parents want and need.

“They want to talk about their baby, they want to see their baby as part of their family, they want their baby to be remembered, and they want to say their baby’s name.”

But even with increased awareness, Stillbirth Foundation Australia CEO Leigh Brezler says grieving parents face structural barriers that prevent them from accessing parental leave from work and death pay.

“We just have to attack it on all fronts,” Brezler says, “PR, structure, government, research funding, and grief care.”

Last September, the government announced that all families experiencing a stillbirth would be entitled to support of over $ 3,600.

The changes followed changes to the Fair Work Act, which would guarantee up to 12 months of unpaid leave for all parents — including those whose baby is stillborn or dies in childhood.

When it comes to supporting those around you who are experiencing the loss of their baby during pregnancy, Brezler has one piece of advice: Listen to the parents.

“It’s really just listening to your friends and family and taking their lead,” she says. “Ask them to share their story, say their babies’ names, recognize their baby, and that it meant something to them, and validate their experience as a parent.”

For more information or support call the 24/7 Red Nose Grief and Loss Support Line on 1300 308 307 or visit rednosegriefandloss.org.au.

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