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NAAPA 2015: Children and families

The following address was given by Barbara Lucas at the NSW ACT Alcohol Policy Alliance (NAAPA) 2015 NSW Election Platform launch. Barbara is a Paediatric Research Fellow from the George Institute for Global Health.

The alliance launched their platform ‘Not one more’ at Sydney’s Parliament House in November 2014, urging NSW MP’s to take action on alcohol. Each day in NSW alcohol results in 66 assaults, including 27 domestic assaults, 28 emergency department presentations, 142 hospitalisations and three deaths. One more harm from alcohol is one too many.

The upcoming State Election in March 2015 provides NSW with an opportunity to ensure that their next Government continues to work towards a comprehensive plan that addresses alcohol harms.

My work over the last 3 years has shown me the devastation that alcohol may cause to children and their families.

I have been part of a large team working with Aboriginal communities in the Kimberley to provide the first estimations of the number of children that have been damaged by the alcohol their mothers drank during pregnancy1.

This work is being led by brave Aboriginal women in the Kimberley working in collaboration with The George Institute for Global Health and The University of Sydney2.

The work is extremely important as it documents for the first time the impact of alcohol on the next generation.

What is FASD

Women who drink heavily when pregnant may have a baby born with a Fetal Alcohol Spectrum Disorder, or FASD as it is commonly known.

FASD are not unique to Aboriginal Australians and are seen right across Australia. FASD is an umbrella term with the specific diagnoses being Fetal Alcohol Syndrome (FAS), partial FAS (pFAS) and Neurodevelopmental Disorder–Alcohol Exposed (ND-AE)3.

These conditions are lifelong (that is children can never be cured) and importantly they are 100% preventable.

A child may be born with a FASD wherever maternal alcohol use occurs regardless of socioeconomic status or race.

Alcohol is toxic to the developing foetus and therefore can cause damage to the brain and other organs of the unborn child.

Children born with Fetal Alcohol Syndrome have abnormal facial features and poor growth, and may have a range of birth defects4.

They also have problems with learning, behaviour, and physical development including speech, academic achievement and motor skills and these problems persist into adulthood5.

Children affected by FASD present with differing impairments as the damage caused will be dependent on the amount, timing, and frequency of the alcohol exposure, as well as the genetic predisposition of the fetus and mother6. There are many children who do not meet the criteria for a FASD diagnosis who are still affected by functional impairments7.

FASD is described as the “invisible disability” as the alcoholic cause of the impairments is either unrecognised or children at the less severe end of the spectrum may appear physically normal8.

These children may be mislabelled as “naughty” or “problem” children when in fact the behavioural and learning problems they are struggling with are caused by brain damage from prenatal alcohol exposure.

Prevalence and impact

Recognition of the devastating effects of FASD is growing worldwide.

Since 2010 the World Health Organization has reported FASD as the leading preventable non-genetic cause of mental retardation9.

In Australia, estimates of the prevalence of this disorder are limited by under-diagnosis and under-reporting10. A better estimate may be provided by studies from the United States and some Western European countries which report the prevalence of FASD among school children to be as high as 2-5%11.  Prevalence will be much higher in populations where high risk alcohol use occurs. FASD diagnosed children are also overly represented in adoptive and foster-care children12.

The burden of FASD is enormous not only to families caring for these children, but for teachers, the judicial system and the communities in which they live as adults.

An American study following the lives of 415 children with FASD until they reached 21 years found 60% had trouble with the law, 50% had judicial or psychiatric confinement, 49% demonstrated inappropriate sexual behaviours on repeated occasions and 35% had alcohol /drug problems.

The odds of escaping these adverse outcomes are increased 2-4 times by early diagnosis and being reared in good stable environments13. However many of the reasons underpinning maternal drinking, such as domestic violence, family dysfunction and social disadvantage, may make these necessary stable environments elusive.

The overwhelming majority of children with a FASD diagnosis will need support throughout their life, to help them function in their daily activities and maintain independence.

It is estimated that only 8% of affected children will be able to maintain independent living or employment by the time they reach 21 years of age14.

The Lililwan project

Our study, Marulu – The Lililwan Project, is the first FASD prevalence study in a remote Australian community.

The Lililwan Project Chief Investigators included June Oscar, Maureen Carter, Professor Elizabeth Elliott, Professor Jane Latimer, Dr James Fitzpatrick.

Our team conducted pioneering research on alcohol use in pregnancy and FASD in the remote Kimberley region of Australia2.

Here, Aboriginal community leaders are driving solutions against the problems caused by alcohol misuse. In the Fitzroy Valley, communities were concerned that FASD would interrupt the transfer of Aboriginal culture from one generation to the next so they fought for alcohol restrictions and prevention programs to minimise the harm from alcohol use in the community1. Such community initiatives are vital and must be supported.

We found that one in eight children born in 2002 or 2003 and living in remote Fitzroy Valley communities in Western Australia have Fetal Alcohol Syndrome16.

We have determined the number of children affected by FASD to help draw attention to the problem and provide better support to affected children and families2.

Let’s make FASD history

We will never know exactly how much alcohol is “safe” to drink during pregnancy because we can’t experiment on pregnant women.

Therefore, doctors advise that the safest option is to abstain from alcohol if pregnant or planning a pregnancy15.

The solutions to preventing alcohol misuse in pregnancy lie in understanding why some women continue to drink. We know from speaking to women in remote communities that they did not understand the damage that alcohol could cause to their unborn child. We have also seen first-hand the enormous difficulties these women face in their daily lives, and how alcohol is used to alleviate their pain.

There is no doubt that alcohol can cause significant harm to children even before they are born. Children are our future and we must give them every chance at a healthy start to life.

The challenge of FASD is enormous, the condition devastating and lifelong.

There is no time to waste – we must act on FASD now.

We want no more children with Fetal Alcohol Spectrum Disorders.

Further action is needed to achieve this aim. In New South Wales this must include:

  • FASD prevention programs – and assisting women to have healthy pregnancies
  • raising awareness of FASD and its cause
  • providing clinics for the diagnosis and management of FASD
  • recognising FASD as a disability
  • supporting affected families and children
  • review of pricing, taxation and easy access to alcohol.

Many of you assembled here have the power to make this happen.

When you leave here today I ask you to reflect on what you can do to make FASD history – to ensure that the children born tomorrow will not have to live a life damaged by alcohol.

Not one more child born with a FASD.

Download a list of references for this post.


View Barbara Lucas’ presentation in full on Vimeo.

You can get involved in NAAPA’s Not One More campaign by sending an email to your local member calling on them to take action on alcohol. Find out more

Barbara Lucas

Barbara is Deputy Manager of Physiotherapy Services at Royal North Shore Hospital (RNSH). She is a Specialist Paediatric Physiotherapist with the Australian College of Physiotherapists and has more than 18 years clinical experience. She has a Masters in Public Health and an interest in public and international health, and previously worked in Tanzania in 2006. She is currently the Paediatric representative for the Board of Censors, Australian College of Physiotherapists and the Allied Health representative on the Northern Sydney Local Health District (NSLHD) Research and Innovations Subcommittee. She was seconded in 2011 to work with the Lililwan Project – the first case ascertainment study in Australia investigating the prevalence of Fetal Alcohol Spectrum Disorder (FASD) in communities in the Kimberley, WA. Barbara is now back at RNSH completing a PhD connected to this work in collaboration with the community of Fitzroy Crossing; the Discipline of Paediatrics and Child Health, The University of Sydney; and the George Institute for Global Health. Her work is being funded by a scholarship from the Poche Centre for Indigenous Health, Sydney Medical School, The University of Sydney. Her research is investigating the effect of prenatal alcohol exposure on gross motor skills to support improved health outcomes for Aboriginal children.

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