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Foetal Alcohol Spectrum Disorder: the Invisible Disability

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Foetal Alcohol Spectrum Disorder: the Invisible Disability Education and Health Standing Committee Foetal Alcohol Spectrum Disorder: the invisible disability Report No. 15 Legislative Assembly September 2012 Parliament of Western Australia Committee Members Chairman Dr Janet Woollard, MLA Member for Alfred Cove Deputy Chairman Mr Peter Watson, MLA Member for Albany Members Dr Graham Jacobs, MLA Member for Eyre Ms Lisa Baker, MLA Member for Maylands Mr Peter Abetz, MLA Member for Southern River Committee Staff Principal Research Officer Dr Brian Gordon Research Officer Ms Lucy Roberts Legislative Assembly Tel: (08) 9222 7494 Parliament House Fax: (08) 9222 7804 Harvest Terrace Email: [email protected] PERTH WA 6000 Website: www.parliament.wa.gov.au/ehsc Published by the Parliament of Western Australia, Perth. September 2012. ISBN: 978-1-921865-58-9 (Series: Western Australia. Parliament. Legislative Assembly. Committees. Education and Health Standing Committee. Report 15) 328.365 Education and Health Standing Committee Foetal Alcohol Spectrum Disorder: the invisible disability Report No. 15 Presented by Dr Janet Woollard MLA Laid on the Table of the Legislative Assembly on 20 September 2012 Chair’s Foreword In 2009, the National Health and Medical Research Council (NHMRC) published the “Australian Guidelines to Reduce Health Risks from Drinking Alcohol”. Guideline 4 for Pregnancy and breastfeeding: Maternal alcohol consumption can harm the developing foetus or breastfeeding baby. A For women who are pregnant or planning a pregnancy, not drinking is the safest option. B For women who are breastfeeding, not drinking is the safest option.1 The safest way for a mother to ensure there is no harm to her unborn child from her alcohol consumption is not to drink alcohol during pregnancy. This is a difficult task for mothers as research shows 50% of pregnancies are unplanned and so the mother may be drinking for a while before she becomes aware she is pregnant. Alcohol is a teratogen to an unborn child For the unborn child, alcohol is a teratogen. A teratogen is an agent which can cross the placenta and interfere with the normal development of the embryo or foetus. Alcohol can cause a wide range of birth defects which come under the umbrella term of Foetal Alcohol Spectrum Disorder (FASD). These birth defects last a lifetime and have major social, behavioural and financial implications for the child born with FASD, their family and the community. A teratogen is something that a mother has been exposed to or which she exposes herself to during her pregnancy. Known teratogens include diseases such as rubella and medications such as thalidomide. As a teratogen, alcohol can harm an unborn baby at any time during a pregnancy. The harm done to the baby is influenced by the stage of growth of the embryo or foetus 1 National Health and Medical Research Council “Australian Guidelines to Reduce Health Risks from Drinking Alcohol” Commonwealth of Australia 2009. when the alcohol was consumed, how much alcohol was consumed, and the pattern of the mother’s drinking. The mother’s social, behavioural and economic status may influence, when, how much and the effect of the alcohol on the mother and child. The harm done by alcohol to the unborn child may not be evident at birth but is life‐long. There is no safe amount of alcohol intake. FASD is completely preventable if no alcohol is consumed during pregnancy. During pregnancy, alcohol passes from the mother’s blood stream to the unborn baby’s blood stream. The alcohol may stay longer in the unborn baby’s blood stream as the baby’s liver may metabolise the alcohol more slowly. Alcohol can damage and affect the growth of the unborn baby’s cells. Alcohol can cause miscarriage, stillbirth, brain damage or many other problems which will affect the child after it is born. Alcohol destroys the developing brain cells. The damage caused can be mild or severe. A child born with FASD has a lifelong condition which affects their lifestyle, the life of their family, their friends and the community in which they live. Cognitive impairment (CI) is caused by the dysfunction or developmental delay from the damage or deterioration of the developing brain caused by alcohol. Cognitive impairment is as an ongoing impairment in comprehension, reason, judgment, learning or memory. A child with CI may have developmental delays, difficulty hearing, problems with vision, learning problems, language and speech deficits, impulsiveness, a short attention span, and difficulties getting along with others. They may be hyperactive, which is why they may be diagnosed as having hyperactivity (ADHD), and have problems controlling their behaviour. Inappropriate behaviour by a person who has FASD is often because of the underlying brain dysfunction. Children and people with FASD often do not make rational decisions or choices. Their inappropriate behaviour may causes problems at school and after school, as they have difficulty finding and maintaining employment. Inappropriate behaviour may include inappropriate sexual behaviours. Related to their FASD is the greater likelihood for them to develop other conditions including alcohol and drug addiction or mental illness. Some mothers may drink alcohol to deal with stress, despair or abuse. The higher the mother’s alcohol intake, the more risk there is of damage to the unborn child. Some women are affected more than others, possibly due to other factors in their lifestyle such as their living conditions, their diet, and their use of other drugs, including tobacco. These women may have more than one child affected by FASD. Sadly, we are now hearing of children born with FASD whose mother and grandmother may also have FASD. Drinking alcohol during pregnancy has been described, by Dr Stone in the Commonwealth Parliament, as “gambling with the welfare of your unborn child”.2 Dr Stone said “we need to move away from the nonsense about a little bit will not hurt and have women and their partners understand that for nine months, at least, it is important not to gamble with the future, the lifetime of your child”.3 Further she went on to add “in order to change the rights of a child to be born without a preventable disability we have to make sure there is no misinformation in the community”.4 The pressure on the families of children and adults with FASD is high as they try to access care, special education programs, services and support. Non‐government organisations such as the National Organisation for Foetal Alcohol Syndrome And Related Disorders (NOFASARD), have been developed to represent the interests of parents, carers and others interested in or affected by FASD. Medicine is evidence based: there is a need for screening, diagnosis, data collection and prevention. To decrease the prevalence of FASD in WA the government must provide funding for: Screening; Diagnosis; The collection of prevalence data; and Prevention. Screening Screening to prevent FASD should commence ante‐natally by general practitioners and midwifes. Other health professionals should also screen girls or women of child bearing age who they have as clients who have drug or alcohol problems. In Western Australia, the general practitioner, the child health nurse or the school health nurse will, at different times, undertake infant and early childhood screening which may identify early cognitive or behavioural developmental delays. As well as routine screening, targeted screening should occur for newborns and children at risk of FASD. There are a number of scheduled opportunities for such checks In the case of Child Health Nurses, checks are meant to occur at birth, 6‐8 weeks, 3‐4 months, 8 months, 18 months, and at 3 years. In addition a school entry assessment is performed by school health nurses. School Health Nurses collect this data using the Parents Evaluation of 2 Dr Stone., Commonwealth House of Representatives, Hansard p141 22/8/11. 3 Ibid p142. 4 Ibid p142. Developmental Status (PEDS) questions. Depending on the outcome of this assessment the school health nurse might then ask parents to complete an “Ages and Stages” questionnaire or might organise a referral to specialist services. Such screening supports the early development of intervention and management strategies for affected families. Current shortfalls in both Child and School Health Nurses will impact the effectiveness of such screening. Diagnosis A diagnostic tool will enable the Government to determine the prevalence of FASD in WA and Australia. Diagnosis of FASD requires a multidisciplinary approach from paediatricians, general practitioners, nurses, social workers, psychologists, speech and language therapists. In the United States it has been estimated that one out of every 100 babies are born with FASD.5 The Committee was told that 30% or higher of the population in some remote Aboriginal communities may have FASD. We were also told that in WA children are being born who are 2nd or 3rd generation children with FASD. This means children born with FASD may have parents and grandparents who have FASD. The reason children with FASD have not been diagnosed at birth is because these children do not look different from other children. The damage done to their brain during embryonic and foetal growth leads to cognitive impairment causing developmental delays that last a lifetime. Given that FASD is diagnosed in other countries it is unacceptable that West Australians, and Australians, are still waiting for the government to sign off on an agreed diagnostic tool for FASD. Other countries that have FASD diagnostic tools for young children are now developing tools to help diagnose older children, teenagers and adults with FASD. Often these older children, teenagers or adults present as clients in the juvenile and criminal justice system. This is sadly because the inappropriate behaviour of these individuals often sees them come into contact with these services. Prevalence Without screening and diagnosis we do not know how prevalent FASD is in the community.
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