When Hayley and Liam Murphy's twin baby boys Ned and Jack died at 21 weeks from a rare twin-specific syndrome, they wanted to make sure nothing else had contributed to their deaths.
On the advice of their obstetrician, the Murphys agreed to autopsies on both the boys, which confirmed they had died of Twin to Twin Transfusion Syndrome (TTTS).
"She was the one that really felt that because that was our first pregnancy … that was recommended to confirm that it was Twin to Twin Transfusion Syndrome, because we didn't want to have to find anything else congenital," Hayley said.
"The discussion was clear in our minds that we wanted to make sure that what had happened to the boys wasn't something that was unrelated to them being twins," Liam said.
"For us, it was imperative to sort of ease the mind in some respects, so that next time around when we were, if we were able to have children again, then hopefully that wasn't something else and we wouldn't have that anxiety going through the pregnancy."
The autopsy gave the Murphys the peace of mind they were hoping for when they fell pregnant later in 2016 with their first daughter.
It's that kind of information the government is hoping to provide to more families and researchers through new funding to increase the number of stillbirth autopsies.
In its first budget last October, the government announced it would spend just under $14 million over the next three years to increase the number of stillbirth autopsies.
The bulk of that money, $11.4 million, will go to increasing the number of perinatal pathologists to conduct autopsies and the creation of more perinatal loss coordinators, with another $300,000 toward supporting perinatal pathology career pathways.
State and territory governments will also get $2.2 million as part of joint funding to cover hospital transport costs for stillborn babies who often have to be transported to a centre which has a perinatal pathologist.
Assistant Minister for Health Ged Kearney said she hoped the funding would help families, researchers and eventually policy-makers in an area that the government believed has been "neglected for a long time".
According to the Australian Institute of Health and Welfare, the stillbirth rate has remained between seven and eight per 1,000 births for the last 20 years.
In Australia, stillbirth is defined as the death of a baby before its born at 20 weeks gestation or more and/or weighing 400 grams or more.
Information key for grieving families
Professor Adrienne Gordon from the Stillbirth Centre for Research Excellence said the government's focus on increasing the number of perinatal pathologists was needed, but that there were other barriers potentially preventing the number of autopsies from increasing.
"These are specialised examinations, and they need to be done respectfully by people with the training and there's been a decreasing number of pathologist training specifically in the perinatal area," she said.
"So yes, I think not having enough perinatal to pathologist plays a part, but another large part is in the counselling of families about why an autopsy might be helpful.
"There's a lot of assumed knowledge in the terms of healthcare professionals about what families want, or what they don't want.
"Sometimes, for cultural reasons, healthcare providers might think that a family don't want to have an autopsy in terms of timing of burial of the baby, but they actually haven't had that conversation in a way that supports the parents to make that decision should they want to."
Ms Kearney said she hoped the creation of perinatal loss coordinators would replicate the models used to walk people through conversations around organ transplants after someone dies.
"We have had great success with specifically trained, dedicated, mostly nurses, who have that very difficult conversation with patient's loved ones," she said.
"[The perinatal loss coordinators] will be able to support the families through that process from the time that the baby dies, right through to when the autopsy is finished and when the results are known.
"They may be nurses … who are really skilful, really well trained, empathetic and understanding of the situation that can, at that terrible time in a parent's stillbirth journey, can have that critical conversation with them and say 'this is an option that is available and here's why it's important and we will support you through this'."
She said the details of how many and where the coordinators, as well as pathologists, would be were still being worked out with states and territories.
Hayley and Liam Murphy said as well as their obstetrician, they had the support of a perinatal loss coordinator as well.
"She was very experienced and she stayed, she even did overtime to stay with us until they were born because they went over her shifts," Hayley said.
"She organised for us to have our family members come to meet our children when they were born and yeah she was there the whole time."
The Murphys said their coordinator also organised for Heartfelt, a volunteer organisation, to come and take photos of Ned and Jack in hospital, something they say many people wouldn't know is available.
Autopsies help rule out causes
Professor Gordon said autopsies are performed on around 40 per cent of stillborn babies.
"That's still 60 per cent of families choosing not to have an autopsy and in a certain percentage of those that might well have been the most useful investigation, for them to understand what happened and to potentially help with future pregnancies," she said.
She said that, like the Murphys, in about half of cases an autopsy will confirm what clinicians believe to be the cause of death.
"Then an additional 20 per cent or so, you might gain additional findings that you would not have known … and then there's a proportion that there might be something new [from the autopsy]," Professor Gordon said.
As well as giving researchers a better understanding into what causes stillbirth and how to prevent it, Professor Gordon said they can often help rule out things for parents who may blame themselves.
"People often get focused on the, you know, 'should I have eaten that pre-packaged salad?', for example and so finding out in an autopsy that there's no trace of listeria, and that is not the reason that the baby died, can often be extremely helpful," she said.
"So it's not adding information about the cause but it's adding that information about an important negative, which can help that family in the grieving process."
