Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636821271.pdf (Australia)
Select Committee on Stillbirth Research and Education Department of the Senate, Parliament House, Canberra I am writing to the enquiry from the perspective of a Grandparent having observed and now supporting my son and daughter in law as we all grieve for the loss of their son and our Grandson, Bluey who passed away in utero on January 15th 2018.
Their story like most pregnancies was one of joy, optimism and expectation and it is tragic that in 2018 stillbirth rates are alarmingly high and have not reduced in number over several decades.

https://www.aihw.gov.au/reports/mothers-babies/stillbirths-in-australia-1991- 2009/contents/summary Stillbirth Research and EducationSubmission 240 Research by the Australian Institute of Health and Welfare is constructive in that it provides a basis for defining the current situation.
What is lacking is the communication of these outcomes across our society and a general lack of awareness of the prevalence of stillbirth.

I was alarmed to recently learn that the rate of stillbirth in Australia is at least 20 times the incidence of SIDS.

For every child who dies of SIDS in Australia more than 20 babies die of stillbirth - More than 2300 babies each year The incidence of SIDS has fallen by as much as 84 per cent since 1990 – around one in every 3,000 births, or 130 babies each year.
How is it that we are all aware of SIDS, of RED Nose Day of annual appeals for many different health problems and yet until we experience the stillbirth of a son, a daughter, a grandchild or of a friends child we are largely unaware of the prevalence of stillbirth and its societal impacts?
Stillbirth Research and EducationSubmission 240 A Blueprint for change… What I urge this enquiry to do is to expand its scope and to ask not only “What research should be done to reduce stillbirth rates in Australia” but to also look at the role of funding and awareness campaigns in achieving changed practices and improved health outcomes.
Awareness Research Education Changed practices Improved Stillbirth Rates Stillbirth Awareness One of the fundamental factors limiting a change in stillbirth rates is the overall lack of awareness of the prevalence of stillbirth and the fact that over 2,300 babies die stillborn in Australia every year.

There is a very strong correlation between the reduction in infant mortality through SIDS and the increase in public and parent awareness through the Red Nose Campaign.
In the same way that the awareness of SIDS, breast cancer and prostate cancer has been increased through effective communication and awareness campaigns, Stillbirth needs a similarly effective long-term awareness campaign.

To be truly effective, a Stillbirth awareness campaign requires development by a creatively talented advertising agency underpinned by a commitment to long term funding.
In addition to raising public awareness there is also a requirement for increased awareness of stillbirth among practitioners, parents and carers about the risks of stillbirth and the provision of education to address preventable causes and promote best practices.
Parental and Carer Awareness One of the greatest factors limiting an understanding of the causes of stillbirth is that the majority of stillborn babies do not have an autopsy and that even when they do, the majority of autopsied stillborn babies have an outcome of “No identifiable cause of death”.

This was the case for our grandson “Bluey” who’s autopsy officially stated: “No identifiable cause of death”.
Despite this singular statement there were many contributing factors in Bluey’s case which I am certain would exist in other cases as well.

In Bluey’s case, his mother and our daughter in law, developed Intrahepatic cholestasis of pregnancy.

The significant research we have done into this condition subsequent to Bluey’s death has identified a number of possible changes in her treatment which may have led to a different birth outcome and to Bluey being born alive.
The key in increasing awareness of stillbirth is to create foresight instead of hindsight.

This tragic personal experience with stillbirth which we have encountered as a family creates a very strong compulsion to do anything we can to prevent similar health outcomes for others.

Deeper analysis of stillbirth autopsy reports is required to provide deeper insights into probable causes and the correlations between identifiable symptoms and birth outcomes.
Stillbirth Research and EducationSubmission 240 If the parents of stillborn children were more aware of the need for increased research into the possible causes of and prevention mechanisms for stillbirth, they would perhaps be more willing to consider having an autopsy.

A contributing factor here must surely be the amount of time taken to complete an autopsy for a stillborn child.
Having to wait 6 weeks for an autopsy report is a really long time when as a society we are attuned to holding memorial services and funerals within a week or so of losing any loved one.

For parents of a stillborn child to be willing to allow an autopsy they must not only accept the intrusion of medical analysis on their beloved babies little body, but also delay memorial services and funerals.
To achieve an increase in autopsy rates and provide researchers with an increase in both the quantity and quality of information available requires among other things a reduction in the time for autopsies to be completed.

Reducing Stillbirth rates requires significant funding.

A blueprint for change will never be realised without seed funding and the commitment of long term funding to address stillbirth as a prevalent heath issue which has remained unchanged in over 20 years.
I commend the Senate on initiating this investigation and ask that the terms of reference be expanded to ensure that truly effective change can be achieved.

Gerard Ryan Stillbirth Research and EducationSubmission 240