FASD Awareness Day reports and research

To mark FASD Awareness Day 9th September 2011, here are three previous articles from Gargle Nation on the subject, including a summary of new research into teenage sufferers, WHO work in the area and a link to a youtube discussion by Dr Kieran O'Malley of Crumlin.  There are also links to research and articles on FASD and drinking during pregnancy, and a look at the politics of FASD in Ireland.


Dublin study warns of risks of even small amounts

'Drinking even small amounts of alcohol while you’re pregnant could harm your unborn baby, suggests a new study from Ireland. Researchers have found that just two glasses of wine a week could affect unborn babies’ development.

Researchers found that even low levels of alcohol – around 5 units a week or two glasses of wine – could be linked to foetal alcohol syndrome. This can cause mental and physical abnormalities and stunt growth.  Professor Deidre Murphy, who led the research, has said: “This study emphasises the need for improved detection of alcohol misuse in pregnancy and for early intervention in order to minimise the risks to the developing foetus,” she added'
 The study looked at the alcohol consumption by 60,000 mums-to-be in Dublin between 2000 and 2007.

For the full report click here


Alcohol consumption in pregnancy as a risk factor for later mental health problems

An article published in Evidence Based Mental Health by Kapil Sayal, Dept of Developmental Psychiatry, University of Nottingham, UK

"In Europe, rates of FASD have been estimated at 2–4%. The majority of these children are described as having an alcohol-related neurodevelopmental disorder (ARND), manifesting in terms of problems with overactivity, inattention, behaviour or learning. These outcomes have been found to be associated with moderate levels of exposure (for example, an average of one drink per day).

A study in the USA found that up to 3–4 drinks per week was associated with behavioural problems at ages 6–7 years, after adjusting for confounders. These findings were recently extended by Sayal et al in the UK who found that less than one drink per week in the first trimester was associated with higher levels of mental health problems between the ages of 4–8 years as assessed by both parents and teachers.

The consumption of moderate levels (1–2 drinks per day) of alcohol during pregnancy has been found to be associated with childhood attentional and behavioural problems. There is increasing evidence that the risks from alcohol consumption in pregnancy may persist over time. Cohort studies that have reported data collected during adolescence and early adulthood have described ongoing learning problems, behavioural difficulties, and adult psychiatric disorders such as personality and substance use disorders."

For references and links read the full article here.


Fetal Alcohol Spectrum Disorders: Ireland's 'hidden disability'
From Gargle Nation

Ireland and the UK are facing a major crisis with Fetal Alcohol Spectrum Disorders (FASD), a crisis fuelled by high rates of drinking by mothers and a poor response by government. To coincide with FASD Awareness Day on September 9th, a special conference on 'protecting the unborn baby from alcohol' takes place in the European Parliament. As the organisers say, 'throughout pregnancy, even at low levels of exposure, alcohol interferes with the normal development and can seriously damage the unborn child. Case studies across Europe show there are a substantial number of women who continue to drink during pregnancy, it ranges from 25% in Spain to 35%-50% in the Netherlands and even higher rates in the UK or Ireland at 79%'.

The more commonly known Fetal Alcohol Syndrome is a growing problem worldwide, affecting between 1 and 4 births per thousand.  But Fetal Alcohol Spectrum Disorders covers a wider range of problems associated with drinking during pregnancy.  Evidence Based Mental Health estimates that in Europe between 2–4% of all live births are affected.  'The majority of these children are described as having an alcohol-related neurodevelopmental disorder (ARND), manifesting in terms of problems with overactivity, inattention, behaviour or learning'.  The problems caused to babies and children by drinking during pregnancy are the leading known cause of intellectual learning disabilities. Not only are there physical signs and growth problems, but as FASD Ireland notes, there are 'central nervous system abnormalities such as poor fine motor skills, poor eye-hand coordination; hearing loss which is not related to injury or illness and poor gait when walking'. Alcohol Action Ireland also warns that 'more than three drinks a day increases the risk of miscarriage, 12 drinks a week increases the risk of premature birth and sudden high levels of drinking damage the developing brain'. 

The effects are long term and far reaching. The University of Pittsburgh 2010 study followed 592 people up to the age of sixteen. They found 'a range of behavioural problems' amongst those born to 'mothers who had at least one drink per day in the first trimester of pregnancy', and nearly '60 percent of the male affected patients' were found to have 'conduct disorder as adolescents'.  The narrow definition of FASD is clearly inadequate to describe the full scale of potential problems caused to infants by alcohol intake during pregnancy.

Counting the cost

Ireland is at crisis point with the problem.  As Fiona Gartland wrote in the Irish Times this week 'In a study in Dublin’s Coombe Hospital published in 2006, 82 per cent of women continued drinking while pregnant – almost eight times as many as women in the US, where FASDs are notifiable and drinks carry a warning label'.  This was confirmed in a British Journal of Midwifery study in 2009 which found that 'women in Ireland drink the most alcohol in pregnancy', and the government's own 2009 study which found that 26% of educated Irish women continued drinking while pregnant. Given that more women now drink in Ireland than ever before, with four in ten drinking to harmful levels and an increase of 29% in the proportion of Irish teenage girls hospitalised for alcohol related conditions, the problem of FASD must be reaching epidemic proportions.

Currently, according to Inclusion Ireland,  there are 'just under 27,000 people with intellectual disability registered on the National Intellectual Disability Database in Ireland. That is a prevalence rate of 7.38 per 1,000 of the total population'.  Of course there is no suggestion that these figures relate to FASD alone, but given the potential rise in FASD, is the total number of children with diabilites now set to rise?  And how is the country to cope given that 7,000,000 Euro in cuts to social welfare are expected in 2011 on top of the 6,000,000 Euro already cut in 2010?  To do the sums, the 2008 general survey revealed that Ireland has the highest birth rate in Europe with an average of 6.000 babies born every month.   If four out of ten women are drinking to excess, and 80% of those are still drinking during pregnancy, then potentially the well being of 1,920 babies per month is threatened. 

Government doesn't know

Astoundingly though, thanks to government policy, we don't actually know what the FASD figures for Ireland are.  Like many problems the government chooses to avoid rather than deal with, the issue is buried by a failure to register it.  Asked in the Dail this May about FASD, Dr. James Reilly Minister for Health confessed that
'although FAS is a specific diagnosis...only infectious diseases are notifiable under ...legislation. Therefore Foetal Alcohol Spectrum Disorder (FASD) does not fall within the scope of this legislation. There is no National Register for Foetal Alcohol Spectrum Disorder (FASD). Therefore, the numbers of cases of Foetal Alcohol Syndrome (FAS), Foetal Alcohol Spectrum Disorder (FASD) and Alcohol Related Neurodevelopmental Disorder (ARND) in Ireland are unknown'.

You would think this a matter for shame, or at least for a change in the legislation, but the Minister ducked out with the crumb that the Coombe Women’s Hospital, partnered by the HSE, is 'running a project' on FASD. Although a welcome move, the Coombe study has so far failed to identify many cases of FASD for two obvious reasons.  Firstly it relied on self reporting to assess drinking levels, and so 'only 2 in 1,000 admitted to be heavy drinkers'.  Secondly the babies were only studied for the few days or hours that they were in the hospital. As researcher Deirdre Murphy concedes, 'it is likely that some of the women were underestimating (or under reporting) the amount they drank. In general, fetal alcohol syndrome occurred less frequently than expected in this study, suggesting that it is either not recognized by medical staff, or only becomes apparent after the mother and baby have left the hospital'.  The Coombe project is clearly not even going to scratch the surface of the problem.

In the UK 'we are doing nothing'

The situation in Ireland's drinking neighbour the UK is similar. As the Guardian reported last year 'FASD have so far failed to register on the government's radar, suggesting a pressing need for more integrated working between health and social care. Dr Mary Mather, medical adviser to Tact's foetally affected children's service, says: "Here we are doing nothing, and we suspect we have a bigger problem than other countries because we have one of the highest rates of teenage pregnancy and binge drinking in Europe."

So, abandoned by politicians we must turn to the medical experts.  Dr Kieran O’Malley, consultant psychiatrist at Our Lady’s Hospital for Sick Children in Crumlin is an expert, having worked in the US and Canada and opened the first foetal alcohol clinic in Ireland in 2009. Speaking to the Irish Times he said that
'Because FASDs are not notifiable, there are problems with how cases are processed. The condition is hidden under a complex of ADHD and autistic spectrum or Asperger’s disorder to get services. Officially, there are no cases of FASDs in Ireland because they are not notifiable; it is a classic hidden disability. It seems we are 20 years behind North America with FASDs in Ireland, not dissimilar to how we dealt with child abuse. It is a socio-cultural issue. If a foetus is exposed to alcohol, it chemically increases its craving. I have seen six and seven year olds who steal cough medicines because they can smell it. They go to it like bees to honey"
FASD Ireland calls for action

Michele Savage, founder of support organisation FASD Ireland, also wants to see the disorders become notifiable.  Quoted in The Irish Times she says “If you don’t have the statistics, you don’t have epidemiology, and if you don’t have that, you don’t have services.  This is not about policing women’s pregnancy, but we wish women knew that if they are pregnant, alcohol won’t help their baby.”

No services, no plans

Legislation and services aside, even the simple policy of putting health warnings on bottles seems beyond the two governments at the moment.  It is effective.  As Ms. Savage says, 'since 1989, the US has had warning labels on alcohol and there has been a huge drop in alcohol consumption by pregnant women to 10-12 per cent'. The Irish drinks industry is apparently ready and willing to act according to drinks industry ireland.  Quoting the Acting Director of the Alcohol Beverage Federation of Ireland (ABFI), Kathryn D’Arcy it reports that  'the drinks industry had agreed this measure with the previous Government almost four years ago'.  However 'work on the legislative proposals is on hold at present to await the recommendations of the National Substance Misuse Strategy (NSMS) Steering Group'. 

Admittedly it must be hard to report on a problem that the government has decided does not exist.  There may not be much hope though, even if the labels are agreed. A voluntary code in the UK to put  'don't drink if you are pregnant' warning labels on bottles had the agreement of the \industry, but after three years they had turned in what an independent assessment rated as only a 15% compliance.  Alcohol Concern's assessement of the same issue was an even more dismal 4%.  As David Norris recently said, quoting from Samuel Beckett, 'Ever failed. No matter. Try again. Fail again. Fail better'. The UK government have given the Portman Group a further two years to do just that before the issue of a failure of self-regulation can be discussed.

Until then, with no sign of a government response, no official access to treatment and diminishing resources, Dr Malley's advice must stand. 'The truth is there are no safe amounts of alcohol in pregnancy'.


Pre-natal drinking causes later problems for teenagers

Drinking while pregnant is likely to cause conduct disorders in adolescence says a major study conducted by the University of Pittsburgh School of Medicine, published online this year. Many studies have looked at the critical but extreme problem of fetal alcohol syndrome, but this study looks at the long term effects of drinking while pregnant on all children for many years after birth. The study followed 592 drinking and non drinking parents' children up to the age of 16 years to see what kind of behavioural problems might occur and if there were significant differences between the children of mothers who drank and those who did not.

For the study "women were interviewed at their fourth and seventh prenatal months, and with their children, at birth, 8 and 18 months, 3, 6, 10, 14, and 16 years postpartum. Offspring were interviewed with the Diagnostic Interview Schedule-IV; maternal and adolescent diagnoses were made using DSM-IV criteria at age 16 years. The sample was 592 adolescents and their mothers or caretakers".

The results were conclusive, showing that 'prenatal alcohol exposure is significantly associated with an increased rate of conduct disorder in the adolescents'. The effect was also detected after just 'one or more drinks per day in the first trimester'. Nearly 60 percent of the affected patients were male and almost 36 percent of children with conduct disorder had mothers who had at least one drink per day in the first trimester of pregnancy.The effect remained significant after 'controlling for other variables including measures of the environment, maternal psychopathology, and other prenatal exposures'.  The study concludes that 'more than one drink of alcohol per day consumed by a pregnant woman, especially during the first trimester of pregnancy, increases the chances of behavioral problems up to three times in the adolescence period. Alcohol intake during pregnancy should be considered a risk factor for behavioral disorder among adolescents'.


Fetal alcohol syndrome: dashed hopes, damaged lives

This month (June 2011) the WHO publishes a bulletin on FAS education programmes in Moscow, and the work of  campaigners in Western Cape, which has the world's highest reported FAS.  While rates in the Cape are running at up to 80 babies per 1,000, global rates are at nearly one in a thousand.  Heavy drinking during pregnancy can lead to spontaneous abortion or a range of disabilities known as fetal alcohol spectrum disorders, of which fetal alcohol syndrome is the most severe.  Children with this condition are born with characteristic physical and mental defects, including short stature, and small head and brain.  There is no cure.    Treatment is focused on mental health and medical services to manage the resulting lifelong disabilities that include learning difficulties, behavioural problems, language, delayed social or motor skills, impaired memory and attention deficits.   Yet in many countries the work of education and support is left largely to NGOs.

Denis Viljoen stands in front of his campaign poster
As researcher and human geneticist Denis Viljoen in Cape Town says in the bulletin, “It is estimated that at least one million people in this country have fetal alcohol syndrome and approximately five million have partial fetal alcohol syndrome and [other] fetal alcohol spectrum disorders. It’s tragic because it’s completely preventable”.  Studies show that poor nutrition, ill health, stress and tobacco use also influence the severity of the effects of heavy maternal drinking. The communities most affected are often impoverished, poorly educated and socially deprived.  As the bulletin notes, the costs to society are high. “Fetal alcohol syndrome is also an issue because affected children require special-needs schooling and other forms of specialized care. It really has knock-on effects.”

But despite education efforts, aslong as alcohol is accessible, affordable and socially acceptable, prevention work will be an uphill struggle.  Given the addictive power of alcohol, some women still drink heavily during pregnancy despite receiving the right advice. As a Cape mother said when advised to stop drinking while expecting her son: “I was hard-headed and just kept on drinking.”

Dr. Kieran O’Malley discusses FASD

Consultant psychiatrist at Our Lady’s Hospital for Sick Children in Crumlin


A Danish study by Dr. Erik Skovenborg summarises the research on FASD. 
"The tragedy of FAS is that it is entirely preventable. If a woman, even an alcoholic, stops drinking before she tries to become pregnant, her foetus will not develop FAS or any alcohol-related birth defects. The damage caused by alcohol is probably minimal in the first two weeks of gestation, but during the rest of the first trimester, when the foetus’ organs are forming, the effects may be especially severe. If the drinking continues, additional damage can occur, since the brain develops during all nine months and rapid body growth does not occur until the third trimester."
 For the full report click here

Is alcohol to blame for the ‘autism epidemic’?

This article by Anne Devlin, exploring the link between alcohol and autism appeared in Indymedia, and is followed by several useful links to reports
"Possibly like many if not most other people, I thought Foetal Alcohol Syndrome was a condition that affected the children of alcoholics – those who drank every day throughout their pregnancy or binged regularly. I knew that a couple of glasses of wine with a meal once every week or two wouldn’t do any harm, particularly later in pregnancy. I was supported in that belief by many a doctor and magazine or newspaper article. True, some people said it would be better not to drink but in a context where a glass of Guinness a day was even said to be good for babies because of the nutrients it contained, the total abstainers seemed extreme in their caution.

As the years went on and the question of alcohol and pregnancy began to be discussed more openly, like many women, I worried at the beginning of pregnancy that over-indulgence in the weeks before I realised I was pregnant – what would now be defined as binges, to be honest - would affect the baby. Hyper-emesis or milder morning sickness put paid to any desire to drink at all during the first three or four months and, as the pregnancies progressed and everything appeared to be normal, the concern faded. As with most women, bingeing or heavy drinking never entered into it once I knew I was pregnant but I drank sporadically – never more than two at a time. If the worry about drinking in the earliest stages survived at all to the end of pregnancy, it disappeared completely with confirmation that my babies were healthy and normal. By the time specific learning disabilities were diagnosed – years later - the idea that it might have anything to do with alcohol never occurred to me and, it appears, neither did it to the stream of professionals I have seen in all that time. Not a whisper of a possibility. Nothing, in all the literature I have scoured, the seminars and talks I have attended, the hundreds of discussions with other parents, had ever once suggested a link with alcohol and other learning difficulties. Two articles in a magazine titled ‘The Frontline of Learning Disability’published last week have changed all of that."
For the full article follow the link here


Further Help and Information

For further infromation, links and resources on FASD go to FASD Ireland

Try NHS Direct and click through to the pregnancy zone, where most of your questions on alcohol in pregnancy should be answered.

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