Foetal Alcohol Syndrome (FAS) is a neuro-developmental disorder caused by the mother's use of alcohol in pregnancy. It is thought to have a prevalence of around one in 1,000 (by comparison, the prevalence of Down's Syndrome is one in 600), and is the largest preventable cause of intellectual disability in the world.
While at the more serious end of the scale, those whose children are affected include women who are alcoholics and binge drinkers, risks are also being taken by women who drink even a moderate amount of alcohol while pregnant. There is increasing evidence that low doses of alcohol may cause damage to the foetus.
Characteristics
Gloria Armistead is a volunteer co-ordinator for FASawareUK, a group of parents and professionals devoted to raising awareness about Foetal Alcohol Syndrome. She is also mother to an adoptive son born with FAS. While many people think of FAS children as being born only to alcoholic or habitually drinking mothers, this is not his case. Gloria's son was born to a university student from a middle class background. It was not thought that she had a drink problem, but that she did drink throughout her pregnancy.
Gloria describes the varied nature of the syndrome. 'The effect of the alcohol depends on when the alcohol was consumed, and how much. If a woman drinks heavily on the day that the baby's hearing is being developed, then hearing could be affected.'
As in autism, in FAS there appears to be a spectrum of disorders from the most severe to milder impairments of behaviour. Babies diagnosed with FAS may have some, but not necessarily all, typical physiological characteristics, including low birthweight, small head circumference, small widely-spaced eyes, flat midface, short upturned nose, and a wide philtrum (the groove in the upper lip that runs from the top of the lip to the nose). These physical characteristics become less noticeable after the age of ten.
FASawareUK says the most common behavioural symptoms in FASchildren include attention deficits, memory deficits, hyperactivity, poor problem-solving skills, poor judgement, poor impulse control, lack of control over emotions, being inappropriately friendly to strangers, immature social behaviour, and difficulty in learning from consequences.
A child with FAS is less able to connect an action with its consequences, so may be excessively friendly to strangers, not understanding what they are doing wrong. They may be fearless and tend to misjudge dangerous situations.
Gloria Armistead says that early years practitioners will usually be able to notice the signs, especially if the mother is known to be a heavy drinker. 'They will usually find that the child is hyperactive and won't listen to commands. He may be unable to cope with too much stimuli, be unable to sit still or may have balance problems.'
The FAS child in an early years setting may have difficulty adjusting to new situations, whether it is a different room, a new nursery teacher or a change in routine. Practitioners should take care to introduce new places, people and concepts to them gradually, preferably one at a time.
Because of their hypersensitivity to sounds, there is a risk that the normal amount of noise and movement in an early years setting will be too much for the FAS child. They may become agitated and throw a tantrum.
Dr Moira Plant, author of Women, Drinking and Pregnancy and professor of Alcohol Studies at the University of the West of England in Bristol, says, 'FAS children are much more sensitive to touch and may become distressed if touched. They tend to be irritable.'
Diagnosis
Once it is thought that a child does have many of the signs of FAS, the next step is diagnosis. But this can be a slow process because there is little awareness of the syndrome in the UK. One poll of 81 members of the Foetal Alcohol Syndrome Trust found that a quarter waited more than a year to be diagnosed, while one in eight took more than three years.
As Dr Plant points out, the younger a child is when diagnosed, the better the outcome. But often the symptoms are not recognised or are mislabelled as ADHD, slowing down the diagnosis and prolonging the anxiety of parents.
Unless the mother is known to have a history of heavy drinking, FAS is unlikely to be diagnosed until the child starts nursery, or when behavioural problems are noted. Then they may be referred to a specialist for a cognitive learning difficulty; or they may simply be described as being active, impulsive and very friendly while having trouble maintaining friendships with other children.
Outcomes
A child can never be 'cured' of FAS. It is a life-long condition, and when they reach adulthood, those affected may have difficulty maintaining successful independence. They may have trouble staying in school, keeping jobs or sustaining healthy relationships.
Studies in Germany and Scandinavia have recommended alcohol screening during pregnancy and a more consistent approach to educating women about the dangers of drinking.
A general lack of awareness of the condition means that family support is often not very forthcoming, and parents of FAS children can find it a struggle to get the help and advice they need.
But perhaps what parents themselves need to be aware of is that FAS is a totally preventable condition. The advice given about what women can drink in pregnancy is sometimes confusing. There is no evidence that any alcohol consumption during pregnancy is safe. FASawareUK would like to see a 'no alcohol' rule being followed by all pregnant women. NW
Advice for early years practitioners
* It may help to break the larger group into smaller groups whenever possible, so that the child afffected by FAS will have fewer children to interact with and a greater degree of adult supervision.
* Don't expect the child with FAS to sit and focus on one topic for any length of time, but instead allow him to get up and move around regularly.
* Try to ensure that the child is always supervised, for example, when moving rooms.
* Consider whether the room can be organised so that there is an area that is secluded and free of stimuli, where the child can go and calm down.
* Think about the amount of changes the child experiences during the day, such as a change of room, or a different adult supervising. Could these be reduced?
* Could soft, relaxing music be used to help the child stay calm?
Further information FASawareUK
* www.FASaware.co.uk
* email: FASawareuk@blueyonder.co.uk
Case study: Dominic
Avril Head is the adoptive mother of five- year-old Dominic Head, who was born with Foetal Alcohol Syndrome. Both Dominic's birth parents drank heavily for ten years prior to his birth, and he was diagnosed with FAS at birth. He was fostered out to Mr and Mrs Head at about seven months, and they went on to adopt him. 'By this stage he was very seriously ill, and wasn't expected to survive,' says Mrs Head. 'He underwent life-saving heart surgery and defied all the odds to survive.'
Dominic also has facial and limb deformities and is fed through a tube. He recently underwent an operation to transplant tendon tissue from his thigh into his eyelids in order for him to be able to open his eyes normally.
Mrs Head and her husband were aware of Dominic's problems right from the start. She says, 'When looking at a list of the symptoms, you see Dominic has so many of them, although he does appear to have avoided behavioural problems.'
Mrs Head would like to see more health education for pregnant women. And although she does feel that she and her husband have received help and advice, she believes that more support would have been beneficial.
'Although we have been seeing the same paediatrician since Dominic was a baby, we would like to have been able to speak to an expert in the field.'
Last year Dominic received the Woman's Own Children of Courage award in a ceremony at Westminster Abbey. Mrs Head describes him as a bit of a character with a brilliant personality. Dominic is due to undergo further heart surgery and as he gets older more internal damage is likely to become evident.