Western Australia, like Australia as a whole, does not currently have a screening system or diagnostic tool to identify those at risk of FASD or those already living with the condition. This has impacted attempts to determine the prevalence (how common) of FASD. Numerous population-based studies have been conducted in order to estimate the prevalence of FASD in WA however it is expected that these figures under-represent true numbers.
The largest population-based study to date was conducted by the Telethon Kids Institute and the Western Australian Register of Developmental Abnormalities (WARDA) and looked at the prevalence of FASD in children born in WA from 1980 to 2010. The birth prevalence was calculated as cases of FASD per 1000 births by year of birth. The overall birth prevalence was 0.26 per 1000 births, with 85% of cases being Aboriginal. In addition, many WA FASD cases are 2nd/3rd generations with children having affected parents or grandparents. This highlights the need to educate and inform the public about the dangers of maternal drinking during pregnancy in order to prevent FASD and manage the condition in those affected.
The Liliwan Project
Anecdotal evidence suggests that drinking maternal during pregnancy and FASD prevalence is higher than average in remote Australian Indigenous communities. In 2007, concerned about the welfare of their communities following a wave of alcohol-related deaths, community leaders in the Fitzroy Valley region including June Oscar and others campaigned for alcohol restrictions. Following this, in 2009 they initiated a partnership between Nindilingarri Cultural Health Services, Marninwarntikura Woman’s Resource Centre, The George Institute for Global Health and the Discipline of Paediatrics and Child Health at The University of Sydney Medical School to conduct the landmark 'Liliwan Project' to tackle the issue of FASD.
'Liliwan' means 'all the little ones' and is part of a larger strategy known as 'Marulu' meaning 'precious, worth nurturing' and aims to prevent FASD, diagnose FASD and support affected families with a goal to heal Indigenous communities and create a brighter future for their children.
The results of the Liliwan Project's prevalence study showed that of the 108 babies born between 2002-2003, 13 had FASD. This relates to 120 cases per 1000 births, or 1 in 8 children affected by FASD – the highest reported prevalence in Australia. In addition, 55% of mothers interviewed had drank high levels of alcohol during pregnancy and most were unaware that this could harm the developing fetus. Following this, the collaborative team is now working to educate communities about the risks of drinking during pregnancy and management of the challenges faced by children affected by FASD and their families.
Without a diagnostic tool it is difficult to determine the true prevalence of FASD in WA or in Australia as a whole. Population-based studies are useful for determining prevalence in certain communities but cannot be easily applied nationwide and it is likely that FASD figures are under-reported.
The largest population-based study to date was conducted by the Telethon Kids Institute and the Western Australian Register of Developmental Abnormalities (WARDA) and looked at the prevalence of FASD in children born in WA from 1980 to 2010. The birth prevalence was calculated as cases of FASD per 1000 births by year of birth. The overall birth prevalence was 0.26 per 1000 births, with 85% of cases being Aboriginal. In addition, many WA FASD cases are 2nd/3rd generations with children having affected parents or grandparents. This highlights the need to educate and inform the public about the dangers of maternal drinking during pregnancy in order to prevent FASD and manage the condition in those affected.
The Liliwan Project
Anecdotal evidence suggests that drinking maternal during pregnancy and FASD prevalence is higher than average in remote Australian Indigenous communities. In 2007, concerned about the welfare of their communities following a wave of alcohol-related deaths, community leaders in the Fitzroy Valley region including June Oscar and others campaigned for alcohol restrictions. Following this, in 2009 they initiated a partnership between Nindilingarri Cultural Health Services, Marninwarntikura Woman’s Resource Centre, The George Institute for Global Health and the Discipline of Paediatrics and Child Health at The University of Sydney Medical School to conduct the landmark 'Liliwan Project' to tackle the issue of FASD.
'Liliwan' means 'all the little ones' and is part of a larger strategy known as 'Marulu' meaning 'precious, worth nurturing' and aims to prevent FASD, diagnose FASD and support affected families with a goal to heal Indigenous communities and create a brighter future for their children.
The results of the Liliwan Project's prevalence study showed that of the 108 babies born between 2002-2003, 13 had FASD. This relates to 120 cases per 1000 births, or 1 in 8 children affected by FASD – the highest reported prevalence in Australia. In addition, 55% of mothers interviewed had drank high levels of alcohol during pregnancy and most were unaware that this could harm the developing fetus. Following this, the collaborative team is now working to educate communities about the risks of drinking during pregnancy and management of the challenges faced by children affected by FASD and their families.
Without a diagnostic tool it is difficult to determine the true prevalence of FASD in WA or in Australia as a whole. Population-based studies are useful for determining prevalence in certain communities but cannot be easily applied nationwide and it is likely that FASD figures are under-reported.
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