Support for parents of children with foetal alcohol problems

Julia Brown and her husband adopted a daughter whom they discovered suffered from Foetal Alcohol Syndrome. They sought help but couldn’t find any so they started their own charitable trust to provide the sort of advice needed. Here is their story.

One can easily find a great deal of material about the continuing concerns surrounding the increasing amount of alcohol being drunk by women, particularly younger women, the so-called “ladette” culture, the weekend binges, the professional women competing in a “man’s world”, but there is relatively little mention about the damage being done to the unborn babies these ladies are carrying.

Indeed, there also still seems to be mixed advice being given on alcohol consumption during pregnancy, to pregnant women and those contemplating having children.

So, what is the issue here? Why is it important that a clear message to avoid alcohol in pregnancy should be given to women and why should we teach this to our young people in school before they embark on relationships?

The answer is FASD – Foetal Alcohol Spectrum Disorders. Alcohol passes freely across the placenta into the unborn child’s system and it can cause to the unborn child a range of irreversible brain damage and physical damage that lasts a lifetime. There are many factors, including when in the pregnancy a woman drinks alcohol, how much she drinks, her overall state of health and the genetic make-up of both the mother and the unborn child, as to whether any damage is or is not done to the foetus.

However, it is a myth that to drink at the end of the pregnancy – or even after the 12th week - is “safe”. This is because the brain and central nervous system continue to develop throughout the pregnancy, therefore remaining vulnerable to damage at any time.

There has been a great deal of debate, some quite heated, here in the UK, about how much a woman can drink before any damage is done. The answer to that question is still unknown, but research in the USA and elsewhere has consistently shown that even a low intake can be, for example, sufficient to stunt physical growth. The best and safest option is to remove all risk and not consume any alcohol during the pregnancy.

Indeed, on this issue, the UK lags behind the rest of the world. Women in the USA have been advised to avoid alcohol in pregnancy since 1981, which is 27 years ago. In France, as in the USA, they now label alcohol bottles advising of the potential dangers of drinking when pregnant.

This lack of information and awareness is what led my husband and myself to start The FASD Trust. We have an adopted daughter with FAS (Foetal Alcohol Syndrome) and whilst we could find some amazing Canadian Government websites, a fabulous support group in Australia, we could find hardly anything here in the UK.

We rapidly discovered there were a number of families in our situation, caring for a child with FASD, feeling isolated, unsupported and misunderstood. We have found birth parents struggling with their guilt and their children’s anger, fearful of society stigmatising them. The Trust now runs a number of support groups around the country to give them a voice and a safe place to share. We have a telephone helpline and a website to give information that is relevant to life in the UK.

We are aware that the families we are supporting are just the “tip of the iceberg” as WHO estimates 1 in 100 children born in the UK each year have FASD, with 1 in a 1000 being severely damaged by prenatal alcohol exposure.

We are also noticing that the babies born during the binge-drinking spike of 2003 are now 5 and entering school, where they cannot sit still or concentrate, cannot follow instructions, struggle with speaking appropriately, have poor social skills, throw temper tantrums, and we are increasingly receiving calls from teachers for assistance.

It is important that we talk about this subject, not only so that those, like our daughter, can be understood and receive appropriate support, but also to prevent another generation being born needlessly damaged in this way. If we do not educate the upcoming generation, then as someone recently commented, “it will not be their fault, but it will be their legacy.”

For more information or to contact The FASD Trust, go to
www.fasdtrust.co.uk
or call 0560 268 9478.