What would you do if your children regularly awoke at 2am, then snuck out the back and painted themselves and the car green before slipping quietly back to bed, or climbed out of their cots, rearranged them into a climbing frame, then took off their pyjamas and went to sleep in the laundry? Would you call them naughty, nocturnal, not your own?
This is typical behaviour of Foetal Alcohol Syndrome (FAS) affected children.
Diane R, a carer of two young FAS sufferers says these kids exhibit impulsive, irrational behaviours and do not learn from experiences because they cannot understand that what they did was wrong. “In order to teach them the stove is hot and will burn them we have to repeat it over and over, every day for months, before it seems to sink in and even then we are never sure they have really learned the lesson,” she says, “FAS children don’t just struggle with learning to count, but learning life skills essential for their safety.”
Most women are now aware that heavy drinking in pregnancy can harm their babies. They are less aware of what FAS is. Drinking alcohol while pregnant will cause your baby permanent birth defects. Damage level can be determined on a sliding scale. Alcohol is a teratogen and neurotoxin, it crosses the placenta, killing off neurons in the foetal brain.
Your child’s ability to learn at school, to hold down a job, to avoid getting caught up in the cycle of drug and alcohol abuse will all be compromised if you drink while pregnant. Just a few too many drinks in one sitting could cause cognitive difficulties with reasoning, memory, planning, poor judgement or difficulty handling money. Sufferers have problems with speech, attention span, hyperactivity, socialisation, or conversely, they may be over-friendly, easily taken advantage of or simply unable to read social cues.
Canada Northwest Foetal Alcohol Spectrum Disorder Research Network CEO and Professor of Paediatrics at the University of Washington, Professor Sterling Clarren a leading expert in FAS, describes it as “a condition of mysterious mal-adaptation”. He said it’s clear that the person isn’t coping with life, but it isn’t clear why. They are suffering from cognitive disabilities they will have for life.
The more you drink the more damage you do. Heavy drinking, defined as six or more drinks a day (one drink is defined as 100ml of wine or 375ml bottle of mid-strength beer or 30ml of spirit) is highly likely to cause FAS. This is the extreme end of the spectrum and is easily diagnosed. A small amount of alcohol may do a correspondingly small amount of damage, but spread across different areas it can also be hugely debilitating and is harder to pinpoint and diagnose as alcohol related.
Most babies with FAS are not diagnosed at birth, as not all exhibit classic FAS facial features. Doctors find it hard to identify women who have been drinking and therefore do not look for the signs of Foetal Alcohol Spectrum Disorder (FASD) and related effects on babies. Diagnosis often comes later, when the child is having learning or behavioural difficulties. Getting that diagnosis is not easy, in fact, the condition may never be diagnosed, and is often misdiagnosed as ADHD or autism.
Although a final diagnosis comes from a doctor, the first identification comes from allied professionals – speech pathologists, occupational therapists, psychiatrists, psychologists, who will all see one small part of the damage done and assemble a picture of the individual problem. National Organisation for Foetal Alcohol Syndrome and Related Disorders (NOFASARD) spokesperson Sue Miers says the diagnostic facilities to be able to diagnose FASD just do not exist in this country. “There is not one interdisciplinary diagnostic team specially trained to diagnose FASD in Australia and individuals with FASD are seldom recognised and seldom connected to service dollars,” she says.
FASD, as such, is not listed as a disability at Centrelink, so financial support is limited. Diane says families caring for children with FAS desperately need support. “Our children need on-going physiotherapy, speech therapy, occupational therapy and hydrotherapy just to keep their little bodies functioning. We have $10,000 worth of equipment in our backyard because without daily intentional exercise, their muscles would begin to deteriorate. Because of their disabilities, they will need a high level of supervised care and support for the rest of their lives because they will not be able to look after themselves…ever,” she cautions.
“We seem to be in denial about the incidence level of FASD in this country” says Sue Miers “while internationally, FAS is conservatively estimated to effect 1-2/1000 live births and the whole spectrum of adverse effects (including FAS) collectively known as FASD estimated to affect 1/100 live births, there have been no population based studies in Australia to determine the true incidence of these disorders or their economic, social or health costs to the community.”
The term Foetal Alcohol Spectrum Disorder (FASD), covers a range of disorders such as Foetal Alcohol Syndrome (FAS), alcohol-related neurodevelopmental disorder (ARND), and Alcohol Related Birth Defects (ARBD).
In fact, many mothers giving birth to FASD affected children are themselves FASD sufferers, and many give birth to more than one FASD affected child. This is particularly sad because one of the effects of FASD is a lack of attachment and these mothers cannot bond with or adequately care for their children. Many babies end up in care, just like their mothers before them. The children Diane cares for came to her at five weeks old, suffering from affective and attachment difficulties. “As babies they were almost non-responsive. They would lie, rigid, hands clenched, staring at the ceiling. They had no muscle tone, no sucking reflex and couldn’t feed. It took us 15 months of perseverance before we saw any sign of attachment, something as simple as a baby resting its head on Dad’s shoulder brought us to tears,” she says.
A study published in the ANZ Journal of Public Health found that overall, women who used substances in pregnancy (including alcohol, cannabis and other illicit drugs) were “older, had a tertiary education, had a higher household income, spoke English at home and were less likely to reside in a major city”. This leads to the assumption that although there is a very visible and well publicised incidence of prenatal alcohol consumption in some areas of our society, there could be a huge unrecognised problem in others.
As Sue Miers says “FASD has no social, economic or racial boundaries and will be found wherever alcohol is part of the culture”. Sadly, ours is a society in which many people drink with the intention of getting drunk. This is the most dangerous type of behaviour where FASD is concerned.
The level of alcohol in the blood of a developing foetus is the same as that of its mother when she drinks. However, because its immature liver can’t metabolise the alcohol, the alcohol stays in the foetal blood longer. Bluntly, if you go on a bender, your baby does as well. Social drinking trends now show young women drinking more than ever before, the most dangerous behaviour for pregnant women at any stage of a pregnancy is binge drinking. As Sterling Clarren notes “High, occasional binge drinking: Now, that’s learned behaviour. You have to be in a community where people teach you that.”
With just one episode of heavy drinking anytime after around day 10 (before you even miss a period), a woman can unwittingly do her child irreversible damage. Before this stage the embryo seems to be protected but once the placenta develops the blood passes between mother and child and alcohol gets into the baby’s bloodstream. The distinct facial features of FAS happen in a specific time window very early in pregnancy – around day 19/20 so one binge during that period is likely to cause the most obvious signs of FAS.
Like it or not, alcohol is socially acceptable in our culture and problems with alcohol are brushed off lightly. Are we deliberately blind to what is before our eyes?
“The saddest thing for me” says Diane “is that, having lived with the effects of FAS first hand, I can recognise the features, the behaviours in so many other children, most of whom have not been diagnosed with anything, let alone FASD.”
The true tragedy of FASD is that it is entirely preventable. The jury is still out on whether an occasional drink or a glass of wine with a meal will harm the foetus. We know for sure, however, that a lot of alcohol can cause great harm. The safest course of action is to avoid alcohol entirely if you suspect you might be pregnant. And if you have been drinking? The good news is that it is never too late to stop and the sooner you stop the greater your chance of having a healthy baby.
The effects of alcohol on your baby
• Low birth weight
• Smaller than normal head circumference
• Small eyes
• Flattened bridge of the nose
• Underdeveloped vertical ridges from the nose to the upper lip
• Thinner than normal upper lip
• Small lower jaw
• Heart defects
• Low IQ
• Tightening of muscle, tendons and ligaments
• Skin restricting movement of elbows or knees
• Developmental delays
• Behaviour problems
• Learning difficulties
• Memory problems
• Increased risk of depression and psychosis
• Increased risk of alcohol and drug misuse
Did you know?
The National Health and Medical Research Council (NHMRC), Australia’s peak health research organisation, has released new guidelines for safe drinking and recommends that pregnant women should never become intoxicated (drunk) and should consider not drinking alcohol at all.
New Australian alcohol guidelines for low-risk drinking have been released by the NHMRC in collaboration with the Department of Health and Ageing. These are available on www.nhmrc.gov.au
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