Six babies are stillborn every day, but the cause of miscarriages and newborn deaths is often unknown
WARNING: The content may be distressing for 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, the names of all three children are signed on cards and the family celebrates the birthdays of three children every year. They define themselves as a family of five.
But the couple never had the chance to meet Isabella, who was stillborn at 33 weeks in May 2016. The shocking loss of their daughter has left the family with a never-ending stream of unanswered questions about it. that could have been.
“Would she have straight hair or curly hair, would she have blue eyes or brown eyes, what would her personality be like,” asks Alicia, 39. “It is not only mourning the death of a baby, but it is also mourning a lifetime of aspirations, stories and milestones.”
Isabella – who would now be five years old – was one of some 2,000 stillborn babies in Australia each year. That works out to about six babies a day, according to figures from the Australian Institute of Health and Welfare, a number that has remained stable over the past two decades.
This is even more common among Indigenous parents, who are twice as likely to experience a stillbirth as their non-Indigenous counterparts.
Pregnancy and Infant Loss Remembrance Day on Friday, Alicia told ABC News that her daughter’s death from maternal fetal hemorrhage was “completely unexpected.” Alicia was given a certificate of good health during a routine checkup, but three days later she was told her daughter’s heartbeat was nowhere to be found.
It wasn’t until Alicia noticed what she describes as “silence” that she knew something was wrong.
“Life then just stopped, it stopped,” she says. “Not a day goes by that I don’t think of her and feel her presence.”
The push for action
Australia is in the midst of a push to recognize stillbirths and other neonatal deaths as a public health problem.
Years of advocacy and a Senate inquiry culminated in December last year with the release of the National Stillbirth Implementation and Action Plan, which hopes to reduce stillbirths by 20% over the course of over the next four years.
The strategy recognizes that substandard 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) implemented a national education program called the Safer Baby Bundle, a suite of online learning modules for healthcare professionals working with expectant parents.
The program covers five key areas that researchers say could reduce late stillbirths, which account for about a third of all cases, by 2023. If successful, the program could save 200 babies each year.
These areas of interest include supporting pregnant women to quit smoking, improving screening and monitoring of fetal growth, increased awareness of normal or abnormal fetal movements, information on safe sleeping positions, and training. better decision making on the right time to give birth.
In Victoria, which was the first state to launch the program, research center co-director David Ellwood says late stillbirth rates have already fallen below target levels.
But better education and better information cannot go further. The majority of stillbirths are not preventable, due to birth defects that affect the baby’s vital organs, premature births and maternal health issues, 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 largely unexplained,” says Prof Ellwood.
He says he would like to see more resources devoted to autopsies and investigating why a baby is stillborn. “Often unexplained means under-investigated,” he says, “families have a right to know why their babies died.”
A support system
While reducing the number of preventable stillbirths is one piece of the puzzle, the other big challenge for the healthcare system is to ensure that bereaved parents are supported throughout the process.
“Stillbirth is something that will always be with us,” says Prof. Ellwood, “so the focus of our work over the next five years will be more to ensure that women and families who experience stillbirth receive the best possible care when they occur – but also later and during the next pregnancy. “
Alicia says she was fortunate to be assigned a support worker at the hospital who accompanied her through childbirth and the early stages of grief. She remembers the support worker who arranged for a photographer to come to the hospital and take pictures of Isabella, which are now lovingly displayed in the family home.
The support worker also helped with funeral planning and put the family in touch with support networks where they could talk about their experience.
But not all bereaved parents receive the same level of care.
“What we want to see is a cohesive approach to providing the best possible care in the worst possible circumstances,” says Associate Professor Fran Boyle, a health services researcher who co-leads the Care after Loss program at Stillbirth CRE. .
The organization has developed clinical guidelines that include 49 recommendations for hospitals when caring for relatives who have experienced a stillbirth. They range from avoiding the word “fetus” to describe the baby to allowing time for skin-to-skin contact after birth.
“People have a lot of misconceptions about stillbirth and the loss of a baby, it can be an invisible loss,” says Professor Boyle.
“We don’t talk about it, sometimes for fear of upsetting parents, or people might think it’s better to move on and think about the future.
But Professor Boyle says this approach is very different from how some parents want and need to grieve.
“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 heightened awareness, Stillbirth Foundation Australia chief executive Leigh Brezler said grieving parents face structural barriers that prevent them from accessing parental leave from work and bereavement payments. .
“We just have to attack it on all fronts,” Brezler says, “PR, structural, government, research funding and bereavement care.”
In September of last year, the government announced that all families who suffered a stillbirth would be entitled to child support in excess of $ 3,600.
The changes followed changes to the Fair Labor Act that would guarantee up to 12 months of unpaid leave for all parents, including those whose babies are stillborn or die in infancy.
When it comes to supporting those around you who are losing their baby during pregnancy, Brezler has a simple tip: listen to the parents.
“It’s really just listening to your friends and family and taking their lead,” she says. “By asking them to share their story, saying their baby’s name, recognizing their baby and telling them it meant something to them, and validating their experience as a parent.”
For more information or assistance, call the Red Nose 24/7 Bereavement and Loss Hotline at 1300 308 307 or visit rednosegriefandloss.org.au.