Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia
Introduction
Stillbirth, the birth of a baby without signs of life after 20 weeks’ gestation, remains a serious public health problem, with an enormous psychosocial impact on parents and care providers, and a wide-ranging economic impact on health systems and society [1].
In this first paper of the Stillbirth Series in Women and Birth, we present an overview of the research and advocacy leading to the establishment of the National Health and Medical Research Council (NHMRC) Centre of Research Excellence on Stillbirth (Stillbirth CRE), and the political processes leading to Australia’s first-ever Senate Inquiry into Stillbirth, which have ultimately led to the National Stillbirth Action and Implementation Plan for Australia.
Section snippets
The need for focussed attention on stillbirth in Australia
Globally, at least 2.6 million women experience stillbirth each year; 7000 women every day [2]. This statistic includes only stillbirths after 28 weeks’ gestation, which is the World Health Organization’s definition. With a lower limit of 20 weeks (a definition commonly used in high-income countries (HICs)), this figure would more than double. Most stillbirths could be prevented by improving health care [3]. While the global burden of stillbirths is largely in low- and middle-income countries [2
Laying the foundations for the first national stillbirth research program
There has been considerable activity in Australia and globally to lay foundations for the first Australian national stillbirth research program, led by the Stillbirth CRE. The first coordinated effort to address stillbirth at a national level in Australia was the establishment of the PSANZ Perinatal Mortality Special Interest Group in 2003, which later became the Stillbirth and Neonatal Death Alliance (PSANZ-SANDA). This group developed a clinical classification system in 2004 [21] to improve
Providing opportunities to expand and improve collaboration between research teams
The initial Stillbirth CRE partnership has grown to a network of 24 organizations including 12 academic institutions, departments of health, peak professional bodies (Royal Australian and New Zealand College of Obstetricians and Gynecologists and the Australian College of Midwives [36]) and the professional societies (Perinatal Society of Australia and New Zealand [37], Women’s Health Care Australasia [38]), and others including The Multicultural Centre for Women’s Health [39]. Parent advocacy
The National Stillbirth Action and Implementation Plan
The Stillbirth CRE and major parent-based advocacy organizations including Red Nose [41], Sands [42], Still Aware [56], Stillbirth Foundation Australia [40], Bears of Hope [43] and others, increasingly applied pressure for government attention to stillbirths in Australia. The key message was the urgent need to address the lack of progress in reducing stillbirth rates. In 2018 in her maiden speech to the Senate, Senator Kristina Keneally (whose baby Caroline was stillborn in 1999) called for a
Conclusion
For too long, the Australian population was reluctant to discuss and confront stillbirth and so it has remained a private tragedy. As a research and advocacy community, one of our most significant achievements has been to bring stillbirths out of the shadows, supporting women and families to talk about their stillborn child and their experiences, helping to address stillbirth collectively as a public health issue. The Australian stillbirth community, with government backing, is now driving a
Conflict of interest
VF is Co-Director for the Stillbirth CRE and receives salary support through an NHMRC Career Development Fellowship. DE is Co-Director of the Stillbirth CRE and has received funding from NHMRC and MRFF. PM is a chief investigator on the Stillbirth CRE and receives salary support through a NHMRC Investigator Grant. CH receives funding as an NHMRC Principal Research Fellow. Caroline Homer (CH), the Editor-in-Chief of Women and Birth, commissioned this series and is a co-author of this paper. The
Funding
This initiative falls within the work program of the Stillbirth CRE which is funded by an NHMRC Centre of Research Excellence grant APP1116640 and MRFF Accelerated Research Grant and Primary Health Care Development Program: The Stillbirth Education and Awareness (GO2536). We gratefully thank the Mater Foundation for their contribution.
Ethical statement
Not applicable to this commentary.
Author contributions
Vicki J. Flenady conceived the paper and worked with David A. Ellwood and Philippa Middleton to draft and revise the manuscript based on author feedback. Aleena M. Wojcieszek, Madeline Forbes, Susannah H. Leisher, Vicki J. Flenady and Hannah Blencowe prepared the Australian scorecard. All authors commented on the drafts and read and approved the final version prior to submission.
Acknowledgements
We thank the women and their families, maternity healthcare professionals, parent advocates, researchers and policy makers in Australia and globally for their contributions to stillbirth advocacy and research. We acknowledged Heidi and Ned Mules for their support over many years providing valuable insights for a parents’ perspective. We acknowledge Stillbirth Foundation Australia, Red Nose, Sands, Bears of Hope, Remembering Riley and other parent advocacy organizations across Australia for
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