Taking foetal alcohol syndrome seriously

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by Jolene Cargill, Newsnet Scotland’s Social Affairs Editor

In our ‘go on, take a drink’ culture, whether you see the decision to drink during pregnancy as a personal choice or a public health issue, the facts about risks of damage to an unborn child from alcohol are sobering.

The trend across Scotland is for women to drink more heavily and more often; one in seven admits to drinking heavily.  Research shows binge or excessive drinking during pregnancy can cause lifelong disabilities.  Yet foetal alcohol syndrome (FAS) is a major blind spot in Scotland.

Drinking during pregnancy can result in birth defects, abnormal facial features, low birth weight, hyperactivity and growth retardation.  The extreme form of the condition consisting of all the symptoms is known as foetal alcohol syndrome.  Foetal alcohol spectrum disorder (FASD) is the name for the spectrum of different types and degrees of brain and nervous system damage that is caused by women drinking during pregnancy.

The negative affects of FAS are permanent and it’s incurable.  Once the damage is done, symptoms follow a child for life.  Unlike many conditions, FAS is also entirely preventable.

Tackling contradictions

Debate rattles back and forth, with articles in the media presenting light to moderate drinking as ‘safe’ consumption levels during pregnancy while the alcohol lobby is quick to react to any criticism.  So-called medical advice on what is safe during pregnancy can be contradictory, to say the least.

Public health messages are equally confusing.  Currently the line from the Scottish Government is that women should avoid alcohol while pregnant or trying to conceive.  The message from the UK Government however, is that one to two units a week is safe.

In Scotland, the Alcohol Strategy and Early Years Framework made only a passing mention of FAS which had been off the policy radar until recently.  Now we are starting to see some clear leadership on the issue.  The Scottish Government has appointed Scotland’s first FASD Coordinator.

Dr Maggie Watts, Chair of the Scottish Association of Alcohol Action Teams and consultant for Ayrshire and Arran NHS, was appointed this month to the part-time post which will see her report on the latest research into FAS and develop a national clinical policy.

Alcohol and children’s charities have welcomed the news.  Barbara O’Donnell, director of services for Alcohol Focus Scotland said, “Every woman wants the best for their baby so the safest advice is for women to avoid drinking alcohol when pregnant or trying to conceive.

“Although researchers don’t know exactly how much alcohol is safe to drink when pregnant, we do know that the risk of damage to the unborn baby increases the more alcohol is consumed.  Binge drinking is particularly harmful.”

“We welcome the Scottish Government’s commitment to raising awareness of the effects of drinking alcohol when pregnant.”

Unpredictable risk

Some women who drink alcohol during pregnancy will have babies that are not affected by FAS but there is no test and no way to predict in advance the risks for each pregnancy.  The Growing up in Scotland survey shows that one in four women drink alcohol during pregnancy and consumption increases with income and social class.  Contrary to findings from previous research, the risk is not highest among women living in poverty.

Scotland’s national children’s charity, Children in Scotland, said the unpredictability of the condition calls for a stronger message.  Dr Jonathan Sher, director of Research and Policy at Children in Scotland said,

“The unpredictability of FAS makes abstinence the only option.  It’s like wearing seat belts.  The risk is never zero. If you drive on a quiet suburban street on a week day afternoon the risk is less than if you drive on a busy motorway in rush hour.  But you always wear the seat belt because you can’t say for sure when you will need it.  What we do know is that FAS is entirely preventable, so why take the risk at all?”

Untold suffering

There is a serious lack of awareness and research in the UK on FAS, and the complexity of the syndrome results in delays in diagnosis and referral.

As few as five children a year are being diagnosed with FAS in Scotland and none are diagnosed with FASD.  If Scotland reflected World Health Organisation statistics, around 50 children would be diagnosed with FAS every year and over 500 with FASD.

Other figures have indicated that up to one in ten and as many as 9,000 could be suffering from FASD in Scotland.  To date there has been no epidemiological survey so it’s not clear how many cases exist.  This lack of information has been a non-starter for effective action in prevention or treatment and support, leaving a hidden population suffering across Scotland.

Taking FAS seriously

Both the lack of awareness and range of complex symptoms makes clear cut diagnosis of FAS difficult, particularly if doctors are not willing or able to identify symptoms.

Eileen Calder had four children placed with her for adoption.  After the children arrived three were diagnosed with foetal alcohol syndrome.  One of her daughters was seriously affected and Eileen later found out her biological mother had consumed more than £3000 worth of alcohol during pregnancy.  Their GP was not willing to diagnose the condition.  “In a letter from our social worker, the doctor had stated that they had a bee in their bonnet about FAS and that even if the children were diagnosed it would have no impact on their needs.”

Without support, Eileen and husband Ray struggled to cope until they volunteered to help FAS UK set up Scotland’s first support group for parents in Glasgow five years ago.  “At first it was adoptive and foster parents coming along but now it’s opening up to all parents and families affected.”  The couple from Hamilton in Lanarkshire is currently setting up a social enterprise that will provide training on FAS to health and social care professionals.

“When we started looking into FAS and got a diagnosis for two of the children, social workers told us to ignore it.  People always played down the significance of it.  Our children have needed intensive care and support.  We have had to parent them closely on fairly basic things for much longer than you would a child without FAS.  We need to start taking this condition seriously in Scotland.”

Early intervention

Women whose drinking is already out of control will not take notice of campaigns or public health messages.  Joyce Leggate, drug liaison midwife from Forth Park Hospital in Fife, works with mothers in the Vulnerable Pregnancy Unit where alcohol misuse among mothers is an escalating problem.  Cases have tripled in the last two years.

The project based in Kircaldy baby unit saw fifteen women admitted in 2008 with alcohol concerns and 50 referrals in 2010.  The rise is attributed to an increase in the numbers of women drinking as well as better antenatal screening.

Ms Leggate said support has to be different for each woman, “We have definitely seen an increase in referrals of pregnant women misusing alcohol.  The challenge in tackling it is educating women so they know why we are asking them to stop drinking.  We have to encourage them to look at their reasons for drinking.  For those who have serious problems we follow the baby after birth to identify problems as soon as we can.”

“It’s a seriously under reported condition.  I can count in one hand the number of full blown obvious cases I have seen.  It’s a huge spectrum so difficult to diagnose.  You could almost blame every problem a child has from movements to behaviour on it.”

Around eighty per cent of the women have FAS.  Joyce said, “We have case histories of the women but it’s not always easy to screen at the pre-natal stages.  We all tend to underestimate our drinking and there is a certain stigma about drinking during pregnancy.  So it’s very difficult to identify what pregnancies are at risk.”

One midwife said working with alcohol abuse can feel like an intractable problem.  “It’s easier to work with heroin addicts.  You might not be able to change their behaviour but you can at least put them on methadone.  Working with alcohol misuse is much harder and longer term.”