Special Feature

Foetal Alcohol Syndrome

Damage to the unborn child is one of the main examples of the way in which alcohol can cause harm to people other than the drinkers themselves

Here, Stefan Lang, Medical Professionals Forum Administrator with the FASD Trust, describes the challenges of responding to the issue

There are two common misperceptions amongst a large proportion of the British population: firstly, that the long-term effects of drinking alcohol apply only to the individual in question. Secondly, that alcoholic consumption in moderation during pregnancy is an acceptable habit. These are not only sentiments held by the average person, but also by a number of the country’s medical professionals. The unfortunate result of this misinformation and laxity is an alarming prevalence of foetal alcohol spectrum disorders

(FASD) in newborn babies across the country. FASD are caused by pre-natal exposure to alcohol. What is important to note is that even moderate amounts of alcohol ingestion by women during pregnancy are enough to leave a baby with FASD symptoms. These symptoms are a broad spectrum of structural anomalies and neurocognitive and behavioural disabilities, constituting Foetal Alcohol Syndrome (FAS) in its severest form. FAS is characterized by evidence of growth retardation, neuro-developmental abnormalities, and a characteristic pattern of facial anomalies. (See Fig. 1 below)

Faces in Foetal Alcohol Syndrome

In a study at the University of California, San Diego, Haruna Sawada Feldman found that “Higher prenatal alcohol exposure in every alcohol consumption pattern was significantly linked to an increased risk of the baby being born with reduced birth weight or length, having a smooth philtrum, thin vermillion border or microcephaly”. Meanwhile, a study in Denmark concluded that even minimal drinking during pregnancy doubles the risk of a miscarriage or causing damage to an unborn child. Dr. Anne-Marie Nybo Andersen said, “If our risk estimates are correct, it’s best not to drink at all” during pregnancy.

That said some experts believe as many as one in three-hundred newborn children in the UK could be suffering from FASD. Accurate statistics are, however, difficult to come by. Although there was a 41% increase in alcohol-related hospital admissions for women aged 15- 44 between 2003 and 2008, diagnosed cases of FASD did not rise. This, according to Dr. Shirin Howell, “suggests that FASD is materially under-reported in the UK.” In order to change this worrying state of affairs, greater awareness for tackling FASD, from prevention to diagnosis to management, is essential. To achieve this, a lot of lost time needs to be made up.

Challenges of Tackling FASD in the UK

The idea that it is “bad to drink when you’re pregnant” is commonly accepted in the UK. However, it is not ingrained in our culture as it is in the US, for example. There, FASD was clinically diagnosed in 1973, and from as early as 1980 women were actively encouraged by GPs and paediatricians to refrain from drinking throughout the duration of their pregnancies, from conception to birth. One need only look at the abundant academic literature on FASD in America in relation to the UK to see the seriousness with which it’s been taken across the Atlantic.

Because FASD have been so poorly publicised in the UK, there is still a fairly relaxed attitude towards pregnant drinking. Indeed, in 2007 The National Institute for Health and Clinical Excellence published guidelines stating that it was safe for pregnant women to drink 1.5 units of alcohol a day without harming their unborn child. Until recently, many women were even encouraged to drink the odd glass of wine by doctors as a means of preventing early labour. Such archaic methods and advice show how far the UK has to come. It could be argued that this arrogance is a result of Britain’s more epidemic drinking “culture”. For some people, it seems, drinking alcohol is such a stable part of their lifestyle that giving-up during pregnancy is too much to ask. That is where community, and national, support is necessary. Prevention is achievable with the complicit help of schools, medical clinics and public organisations. Otherwise, a child is burdened by an incurable condition for life.

And that is not the end of the difficulties. By diagnosing FASD at an early stage in a child’s life, management structures can be put in place to aid their development. Unfortunately, many doctors in the UK find it difficult to diagnose FASD. With such a wide array of symptoms, FASD children are often defined as autistic or as suffering from ADHD or dyspraxia. Whilst they may have some of the symptoms associated with these conditions, their cases are often far more complex and require more considered attention. If we fail to raise awareness amongst the public and medical professionals then misdiagnoses will persist, to the detriment of children and carers alike.

Cluster of Symptoms: FASD

The FASD Trust

Raising awareness is the goal of the FASD Trust, an Oxfordshire-based charity started by Julia and Simon Brown. By taking a dual-approach, which involves targeting not only community leaders, but medical professionals, the Trust seeks to end the casual approach to pre-natal drinking in the UK. One of its key strategies in achieving this lofty goal is through the creation of a Medical Professionals Forum. The Forum’s membership consists of doctors in the fields of paediatrics, CAMHS, psychiatry and psychology and aims to provide a setting for sharing sensitive casework and research on FASD. By using the existing networks of medical professionals, the Trust hopes to spread its message further afield. The Forum provides an education for medics so that they are better-able to diagnose FASD as early as possible and simultaneously advise parents and carers on the management of children with FASD. This is a far more effective method than simply delivering leaflets to schools and community institutions, which alone will not create the national awareness of FASD that is required.

Of course, the FASD Trust takes an active role in the community as well. By running a network of regional support groups for FASD sufferers and their carers, the Trust provides guidance for hundreds of people in need of respite. Whilst early diagnosis is crucial, the management of FASD is even more so, for it is a lifelong responsibility. Medical help can only go so far; it is the carers that shoulder the greatest burden in looking after people with FASD, from childhood to adulthood. This can understandably be overwhelming for many people and is where the Trust works to offer support, based on both medical advice and personal experience. Furthermore, through establishing partnerships with local schools the Trust serves another double purpose. First, it encourages teachers to emphasise to their students the importance of avoiding alcohol during pregnancy, thus minimising the risk of ignorance amongst young parents. Second, it gives teachers direction in dealing with pupils suffering from FASD so that classes are not disrupted, and so that those with FASD receive the best possible education within their limitations.

Preventable

Perhaps the most shocking fact about FASD is that it is entirely preventable. It is only caused by the baby ingesting alcohol when in the womb; a choice taken on its behalf by the mother. To think that thousands of people in the UK, and their carers, are faced with life-long repercussions because of a person’s selfishness or ignorance is saddening. Encouragingly, the FASD Trust and its forum are proving that medical attitudes towards FASD in the UK are changing. Only through collaboration between the medical world and the community at large can we hope to reverse the worrying trends of FASD case-prevalence in this country.

In addition, by offering expert advice and dedicated support groups, the Trust helps improve the lives of those affected by FASD. Despite their disabilities, people with FASD are capable of great empathy and affection, whilst having a positive attitude towards their surrounding environment. It is essential to nurture this positivity.

We have created the FASD issue. Only through our concerted effort and support can we alleviate the strains placed on the innocent victims of our alcohol-fuelled society.