Almost two million families around the world experience the tragedy of stillbirth each year, yet research shows almost a third of those baby deaths are preventable, and up to 40 per cent are unexplained.
In Australia, about 2,000 families endure this heartache each year.
Warning: This story contains an image some readers may find distressing.
The grief of losing a child and sibling is something the Mules family in Brisbane has endured.
Heidi Mules said before her second daughter, Sophie, was stillborn in 2011, the risk factors of her having a stillbirth were never discussed.
Ms Mules said she was given the option of being induced on her due date, or a week later, so she and her husband Ned chose to delay the induction date for a week to allow their baby to initiate the birth.
When Ms Mules went into labour the day before her induction date, she and Ned headed off to the hospital full of excitement about meeting the new addition to their family.
But when they arrived, a midwife did an ultrasound and could not find the baby's heartbeat.
An obstetrician was immediately called to perform a second ultrasound, which Ms Mules said she and Ned were desperately hoping would show that the first result had been a mistake.
"We could clearly see her heart wasn't beating; there was no mistake. So it was incredibly traumatic," she said.
Sophie had passed away that morning.
"The thing that the general public find most shocking is that when you find out your baby has died, is that you still have to give birth to them.
"It was never a discussion as to how she was born, we had a vaginal delivery, but obviously the hardest thing was that when she came out she was not breathing.
"It was incredibly distressful."
The parents spent 24 hours with Sophie in the hospital, and Ms Mules said they could not fault the bereavement care they received.
"It's shocking to me that, still to this day, there are hospitals where the bereavement care is just not there," she said.
Their third child, Max, was conceived a year after Sophie was born, and the Mules family began to raise awareness and funding for stillbirth prevention research.
"Since that time, Ned and I have spoken a lot about Sophie's story to other clinicians; to anyone who will listen really," Ms Mules said.
"The intent of that is to raise awareness in the community because anybody who has learned Sophie's story through me is as shocked as I was to learn that over 2,000 families in Australia alone every year experience a stillbirth.
"It's a shame. It's a shocking statistic which hasn't changed in years."
New guide targets global governments
The slow progress in reducing the number of stillbirths over the past two decades has, in part, prompted the development of a recently published global advocacy and implementation guide.
Titled Preventing and Addressing Stillbirths Along the Continuum of Care, the guide consolidates best practice from existing resources, programmes and initiatives around the world, with the aim of stopping preventable stillbirths from occurring.
The guide is aimed at national and local governments, health ministries and organisations in an effort to end preventable stillbirths, and ensure compassionate, high-quality and culturally appropriate care for families.
It highlights the work of Australia's Stillbirth Centre of Research Excellence, based in Brisbane at the Mater Hospital, including its national initiative — The Safer Baby Bundle.
The Safer Baby Bundle provides evidenced-based recommendations in five key areas of stillbirth risk factors, including the detection and management of slow fetal growth, decreased fetal movement, safe sleeping positions, smoking cessation and timing of birth.
The guide also cites Australia's National Stillbirth Action Plan — which aims to reduce stillbirth rates by 20 per cent by 2025.
Many bereaved parents want children's names heard
Ms Mules wants the risk factors of stillbirth to be discussed when parents are expecting a child.
"If we were able to say to parents, this is your risk profile for something like stillbirth, it will enable parents to make decisions around things like the timing of birth ... as an example," she said.
"I think it's really important that we can have that discussion in an objective way with future parents, as well as having the general discussion around risks."
Ms Mules has been sharing Sophie's story in the effort to remind people her daughter is not just a statistic.
"Lots of parents who have had stillborn babies include their children in their conversations and want them to be spoken about.
"I think respecting each individual parent's wishes [is important], but a lot of parents of children who have passed away want their name to be spoken."
Stillbirths higher in First Nations, culturally diverse, rural communities
Stillbirth Centre of Research Excellence director Vicki Flenady says the centre is proud to have their work highlighted in "such an amazing document of global advocacy".
"Our work has focused on working with obstetricians and midwives and women to ensure that we provide the best possible care throughout pregnancy, and we pick up on risk factors, and monitor women more closely who have risk factors," she said.
"We know that continuity of care is really important, particularly for those higher risk populations, Aboriginal Torres Strait Islanders, migrants, refugees, rural and remote women.
"To have a care provider who follows them through who knows them well, throughout their whole pregnancy, someone they can call and contact easily when they're concerned."
The centre also works on best practice models for bereavement and mental health care for parents, and care for parents who may have a subsequent pregnancy after having a stillborn child.
Glenn Gardener, director of maternal fetal medicine unit at Mater Mothers Hospital, said unfortunately for some babies there would be nothing to prevent stillbirths.
"The identification of risk factors is still, I think, deficient in some settings," he said.
"That's not the fault of the carers, it's not the fault of women; it's a bigger system issue."
"This kind of document means that we can start affecting the lives of women in low-income settings. That's the hope of a document like this."
Source: ABC