The Lililwan Project, as it is known, is part of a wider community-led strategy developed by local Indigenous women to address the diagnosis and prevention of Foetal Alcohol Spectrum Disorders (FASD) in their community. It also provides support for parents and carers of affected children.
It is an Australian first and the Indigenous leaders in the Fitzroy Valley (Kimberley, WA) who initiated the successful research partnership between Nindilingarri Cultural Health Services and Marninwarntikura Women’s Resource Centre also invited The George Institute for Global Health and the University’s Sydney Medical School to conduct the unique study of FASD prevalence.
Alcohol use in pregnancy is widespread in Australia, according to Chief Investigator Elizabeth Elliott, Professor of Paediatrics and Child Health at the University of Sydney.
“The use of alcohol during pregnancy is particularly prevalent in remote communities. This can have detrimental effects on the developing child, resulting in birth defects, learning and behavioural problems associated with Fetal Alcohol Spectrum Disorders.
“We were invited three years ago by Aboriginal leaders in the Fitzroy Valley in the Kimberley, to collaborate with them in the Lililwan Project, to determine the prevalence of FASD, health needs, and developmental problems in a primary school-age cohort.
“We welcome the federal government’s announcement yesterday of an enquiry into and report on the incidence and prevention of foetal alcohol spectrum disorder. We look forward to working with the government and contributing our unique data to the enquiry.”
The Indigenous female leaders within the Fitzroy Valley community have continued to progress this extremely important health care project by forming partnerships with a diverse range of experts including researchers, pediatricians, allied health professionals, human rights advocates, counselors, psychologists, teachers, youth justice and child protection teams.
Stage 1 of the project was funded by a generous philanthropist and included the development and use of a medical history checklist to obtain information about antenatal exposures, early life trauma, health and development from parents and carers of all children born in 2002 or 2003.
Associate Professor Jane Latimer, from The George Institute said:
“We gathered information about the language groups and geographic locations of children, prenatal exposures including alcohol and other drugs, early life trauma, neonatal outcomes and childhood health problems.”
The second stage will involve a multi-disciplinary assessment of the health and development of the children surveyed in Stage 1. Dr James Fitzpatrick and the clinical team have faced considerable challenges in managing this work in such a remote setting, including dealing with king brown snakes, searing temperatures, rugged dirt tracks, lack of accommodation – necessitating camping for weeks at a time, and a lack of telephone and internet contact.
The recent announcement of a National Health and Medical Research Council grant will allow the completion of the clinical component of Stage 2 and the analysis and reporting of data from Stages 1 and 2. According to Professor Elliott, it will also fund a study of child health service needs and gaps in the Fitzroy Valley. The simultaneous award of a prestigious Practitioner Fellowship to Professor Elliott will facilitate her ongoing work on the project.
The advocacy component of the strategy includes the production of several films. A short film Marulu was made to raise awareness of FASD and their impact on the lives of children, their families, carers and communities. Tristan’s Story, a documentary that follows the life of a child with FASD, is due for release in early 2012. An educational film aimed at professionals will also be produced. Funding for these films has been provided by a philanthropist, the Alcohol Education Rehabilitation Foundation and Blake Dawson solicitors.
The Lililwan project has received funding from both government and non-government agencies including the Federal Departments of Health and Ageing and of Families, Housing, Community Services and Indigenous Affairs and Save the Children. Pro bono support is provided by Blake Dawson Solicitors and M&CSaatchi.
Victoria Hollick (Tues, Fri), 0401 711 361, 02 9351 2579, [email protected]