One of the wonderful things about working for a relatively small charity is that you can see the direct connection between the work that you do and the difference you make to individuals.
But recently the Foundation was part of something bigger – a policy movement to change stillbirth from being treated as a series of personal tragedies to a national public health issue, through the launch of Australia's first National Stillbirth Action and Implementation Plan.
This was an important moment for our dedicated supporters - often bereaved parents who have devoted so much of their time, energy and love, often in honour of their children, to ensure that no family has to experience the tragic loss that they have been through.
As I was rereading the Foundation's submission to the 2018 Senate Select Committee on Stillbirth Research and Education – recommendation 15 to be specific - our principal recommendation was for a plan such as this. To quote:
"An Action Plan would deliver a coherent policy roadmap that sets out priorities, has measurable targets and the necessary funding behind it."
Why an Action Plan?
Well for too long in this country there was silence and stigma around stillbirth.
Bereaved families suffered unimaginable pain, were too often provided with little explanation, and instead of taking home a newborn baby, they take home a lifetime of questions and pain.
This silence is often compounded by a lack of institutional support after the stillbirth and proactive advice during pregnancy.
For too long, there was a fundamental public policy failure across all facets of care – prevention, awareness-raising, bereavement support, data collection and research.
These had to be addressed in totality, in a coordinated way, informed by the experts and by families, and driven by the Commonwealth.
For too long the main funding for stillbirth research and focus on the policy issues came from the families and friends of stillborn children who were trying to stop other people having to go through the same thing.
We needed to turn this around, and as we have seen though other health issues like endometriosis, an Action Plan from the Australian Government was our best way to have a coordinated, funded, actionable, measurable plan to do just that.
This plan says enough is enough, and signals that we will work together to drive down the rate of stillbirth, which has been stubbornly and tragically static at six babies per day, for 20 years.
The plan will save lives
Stillbirth is the biggest cause of perinatal mortality in Australia. Nearly 2,200 babies are stillborn each year, which is almost twice the national road toll.
When it comes to stillbirth, we know there are things that can reduce the risk, and these should be acted upon. The rest should be researched. This plan provides a roadmap to do both.
The Plan's overarching goal is to reduce the rate of stillbirth after 28 weeks by 20 per cent within five years – and to ensure respectful and supportive bereavement care when stillbirth does occur.
This is a plan to save lives.
A 20 per cent reduction in the rate of stillbirth in five years means that more than 400 families each year will get to take their babies home instead of planning their funeral.
Just sit with that for a moment.
The plan includes five priority areas to achieve that goal including: prevention and care, raising awareness through education, improving bereavement care, improving data collection and prioritising research.
With greater community awareness of the risks of stillbirth, more pregnant women will not hesitate to present to hospital when they notice a change in their baby's movements – will settle to sleep on their side from 28 weeks – will quit smoking and avoid second-hand smoke – and more babies will be born alive and kicking rather than silent and still.
An honest, sorrowful photo. A grief I painfully recognise, a loss so profound that our community struggles to speak about it. My 💔 every time I hear of another family who experiences the tragedy of losing their baby, be it miscarriage, stillbirth or neonatal death. https://t.co/7xeCRjzG3c— Kristina Keneally (@KKeneally) October 1, 2020
With better bereavement care and community support we can lift the taboo of this silent tragedy.
Fewer parents will bear the heavy burden of grief or PTSD after the loss of their child. Fewer parents will hear phrases that start with 'at least'. Fewer parents will have their former friends and acquaintances cross the road to avoid contact altogether.
With better data collection, reporting and a greater focus on stillbirth research, we can find reasons for the unacceptably high 20 per cent of all stillbirths and 45 per cent of term stillbirths with no identifiable cause.
As the Foundation submitted in 2018, "To ignore the potential offered by the large advances in technology, in the form of data aggregation, computer learning, and wearable monitoring devices would be negligent. In the search for a solution no stone should remain unturned and every opportunity evaluated carefully."
If we can measure it, we can fix it.
We saw this type of effort work with SIDS from about 1986, when governments and the charity sector worked together to reduce the rate by 86 per cent through education programs and research.
We are also seeing it work in the UK, which has set out to dramatically reduce stillbirth, neonatal and maternal deaths under the banner of Improving the safety of maternity care in the NHS.
It will work here too.
Leigh Brezler is the CEO of Stillbirth Foundation Australia