'We want to talk': Why the silence around stillbirth has to end

Bruce and Janet McMillan discovered many people did not understand the depths of their loss.
Bruce and Janet McMillan discovered many people did not understand the depths of their loss. Photo: Dame Price

On August 3, 2012, two days after being told that our baby had died in utero at 38 weeks and three days for no known reason, our son, Liam Henry, was stillborn. As a result of our loss we discovered how lacking in empathy most people are to those who have had a stillborn child. They often respond with "Oh, you can just have another child" as if it is just an unfortunate incident, a bit like losing your wallet.

We discovered that friends and family are unable to be supportive and eventually disappear. Employers figure you should be good after a few days off and can return to work in your normal capacity. What people forget is that when you lose a child you lose a life, all of the hopes and dreams for that child die as well.

Unfortunately, we are far from alone in these experiences. Australia is one of the safest places in the world to give birth, yet six babies are stillborn every day, making it the most common form of child mortality in Australia. While the national road toll has not been more than 2,000 deaths since 1991, every year since then Australia has reported more than 2,000 stillbirths a year: that is six stillbirths a day, a rate dramatically higher than SIDS. For every 137 women who reach 20 weeks pregnancy, one will experience a stillbirth. The rate of stillbirth for Aboriginal and Torres Strait Islander babies is double that of other Australian women (13 in 1,000 births compared to six in 1,000 births).

The rate of stillbirth in Australia has not changed over the past two decades, despite modern advances in medical practice and health care. Australian rates of stillbirth are higher than New Zealand , the UK, the Netherlands and Scandinavian countries.

In 2014 there were 2,844 deaths from breast cancer from the Australian population of 23.5 million and 2,225 stillbirths from 313 000 births. Yet government funding for stillbirth research lags well behind other areas of research.

A study prepared by Price Waterhouse Coopers for Stillbirth Foundation Australia estimated the total projected direct and indirect costs of stillbirth to the Australian economy to be $681.4 million for the five-year period from 2016 to 2020. The economic impact sits at approximately $33,000 for every mother missing from the labour force as a result of stillbirth.

It is also important to note that there is a distinct difference between how mums and dads grieve over the loss of their child. Separation is not uncommon for these parents. Returning to work too early may impact on an employee’s capacity to function appropriately, an employee may be physically present but mentally absent. In my own situation when I returned to work, I would close the door to my office and not engage with anyone. My colleagues essentially left me alone. Four months later I left my job. Many witnesses at the recent Senate committee into stillbirth research and education hearings reported a similar experience. Many reported leaving their employer, pursuing fewer hours or completely changing their professions.

Research plays a critical role in identifying the causes, risk factors and preventative measures for stillbirth. Yet, there is a lack of coordination and planning in determining national research priorities as well appropriate funding for stillbirth research.

On December 4, the Senate committee tabled its report into stillbirth in Australia. The report's recommendations fall into three key areas.

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First, prevention: giving the right advice to parents and specific training to clinicians.  Mums need to understand their baby’s movements. Movement does not slow down before birth and if there is significant change in movement then mums need to seek medical assistance. Mums need to be supported in that decision, so it is important for medical staff to be trained to understand how best to respond to those who have concerns about their pregnancy.

Second, funding research and the collecting of data with the report setting a target of reducing stillbirth by 20 per cent over the next three years. For half of stillbirths there is no known cause and only 22 per cent will have an autopsy, but placental investigation can provide important information.  It is imperative to identify not only why unexplained stillbirths occur but also the determinants of stillbirth in early foetal development. So setting up a national collection agency to  gather this data is recommended.

The third major recommendation is to ensure there is significant support for parents. Stillbirth has a significant economic impact. There is a need for bereavement support and for paid parental leave as well as training for co-workers and management to understand its impact and how best to support parents on return to work.

Those of us in the stillbirth community only have this report to hold future governments accountable to ensure that other parents won’t have to endure the grief and loss that we have been through. It is my hope this report will help end the silence around stillbirth and I ask, as a bereaved parent, never be afraid to ask bereaved parents about their stillborn child because we are just like every other parent and we want to talk about our children.

Bruce McMillan appeared as a witness at the Senate committee hearing into stillbirth research and education.