Bill Baker, a retired nuclear physicist and his second wife, Vally, were settling down to enjoy their retirement in the village of Charmouth, Dorset, in 1999 when his daughter Lorraine died from an alcohol-related illness. Lorraine had been drinking since she was 14 and had, for years, consumed at least a bottle of vodka a day. Baker agreed to become the legal guardian of his eight-year-old grandson but looking back now, says he had no idea what taking care of Michael would involve. "Our lives went haywire," he says. "It was like being a young family again, we've got to consider him above everything else."
Although Baker always realised that his grandson was different, Michael's behavioural problems became increasingly apparent when he went to live with his grandparents. Michael would lay awake much of the night and during the day had a very short concentration span, a poor memory and little physical co-ordination. Even at eight, he could not be trusted alone in the bath and seemed to forget instructions as soon as they were given to him. "He was always looked upon as a very friendly boy," says Baker. "He would come up and put his arms around strangers and say, 'I love you.'"
But if Michael could befriend adult strangers, he had difficulty making friends his own age, and at school struggled to keep up with his peers. When his problems became worse, Baker booked an appointment to see a paediatric consultant. "As soon as the doctor walked in, he took one look at Michael and said, 'foetal alcohol syndrome'." Michael's slightly flattened facial features were classic signs of FAS and finally, enabled Baker to name his grandson's problem.
The term FAS, coined more than 20 years ago in America, is used to describe a number of foetal abnormalities that can occur in the babies of women who have abused alcohol during pregnancy. The damage caused to the baby is irreversible and ranges from facial deformities to dysfunction in the central nervous system to brain damage. Children may experience anything from attention deficit disorder to autism to mental retardation in confusing combinations. The severity of the abnormality depends on the amount of alcohol consumed and a host of other factors. Baker says when he was finally able to have a CAT scan done on Michael, the results were shocking. "The diagnosis then was brain damage, cells in various wrong places and lack of brain fluid."
Lorraine's was an extreme case, but the government's alcohol harm reduction strategy published yesterday addressed the dramatic increase in alcohol consumption - particularly among young women - in recent years. More than one in five are drinking more than the maximum safe level of 2-3 units a day, while 8% of women aged 18 to 24 are now drinking more than the high-risk level of 35 units per week. Experts fear the incidence of FAS will rise as a result. An earlier government report estimated there were anything between 240 and 1,190 cases of FAS per year in the UK, but the condition is notoriously underdiagnosed and because very little research has been carried out into the condition, the true picture has yet to emerge.
Yesterday's report identified only that pregnant women should drink less or nothing at all. Dr Moira Plant, professor of alcohol studies at the University of West of England and the country's leading expert on women and alcohol, says that given the levels at which young women are drinking in this country, perhaps more attention could have been paid to the issue of pregnancy and drinking.
"If a woman has developed a drinking problem and damaged her liver, her blood alcohol level will be higher for longer and that seems to be the real risk," she says.
A study from the University of Pittsburgh published this week suggests that if a woman drinks only four to seven glasses of wine per week while pregnant, her baby could have learning difficulties. The study of 580 children from birth to the age of 16 found that if their mothers drank even moderate amounts of alcohol their growth, behaviour, brain function and academic ability were affected.
When a pregnant woman drinks, alcohol passes across the placenta to the foetus where it is broken down much more slowly than in an adult's body. Organ damage occurs during the first trimester when the foetus is most vulnerable, from the time the umbilical cord begins to function at five weeks to the completion of organ development six weeks later. Inhibition of growth and neuro-behavioural development occurs in the second and third trimesters so that reducing alcohol consumption at any time can be helpful.
But Plant cautions that women who have an identifiable problem with alcohol are still the ones most at risk. "It's very difficult at those levels of drink mentioned in the US study to know if it's the alcohol that's at issue. Women have to be drinking a lot before they damage their babies. It's not a couple of drinks on a Friday night."
American evidence suggests that even alcoholic women run only a one in four chance of having a child with serious deformities. The real culprits may be conflicting advice to pregnant women and their own lack of information. Fiona Ford, a research dietician who runs the Eating for Pregnancy helpline, says many women have no idea that drinking during pregnancy can harm their baby and are often confused about safe limits.
Family doctors, physicians and psychiatrists and the Royal Colleges all now recommend that pregnant women limit themselves to one or two units once or twice a week. But when the Food Standards Agency introduced new lower guidelines on their website in 2002, (they have since been revised to comply with the Royal Colleges), Ford's phone lines were flooded. "We got calls from women who were terrified because they've had a couple of drinks without realising that they're pregnant," she says, adding that only half the women in the UK actually plan their pregnancies. "We don't want to scare women to death. To isolate the effects of alcohol is very difficult. With alcohol you also have to take the woman's size and shape and her drinking patterns into account."
Dr Clare Gerada, the Royal College of General Practitioners' lead adviser on drug and alcohol misuse, agrees. "Women who drink at extremes also have other behaviours that are confounding variables. Women who drink heavily are also likely to smoke a lot and to neglect their health. It's not a simple correlation between women who drink and abnormal looking-babies." A far greater problem may be the women who drink alone, approach health service professionals late in pregnancy and are treated far less sympathetically then men.
Gerada, a mother of two, says that an occasional drink might actually help a pregnant woman unwind, but parents who have FAS children are adamant that no amount of alcohol is safe. FAS Aware UK, recently founded by Gloria Armistead who adopted a South African child with the syndrome, uses the American slogan, 'No safe time. No safe amount. No safe alcohol.' Susan Fleisher, an American mother of a Romanian girl with FAS, also advocates that women give up alcohol throughout their pregnancy. "It's like smoking; we don't know who will be affected and who won't," says Fleisher who is currently producing an educational film on FAS aimed at school children.
Jane Murphy, whose 12-year-old stepson Ryan suffers from FAS, runs a parent helpline in Scotland. She says women should err on the side of caution. "There is no known safe level and FAS has so many hidden disabilities." Ryan was diagnosed with FAS when he was born prematurely at 25 weeks and his mother, who had a serious drinking problem, died soon after he was born. Although he turns 12 in April, Murphy says he is at least three years behind in school and has severe learning difficulties. "I wouldn't wish the life I have on anybody," says Murphy. "Ryan will never be 100% right. He is very difficult to care for, it's a right job."
All the experts agree, however, that it is women with a significant drinking problem who are the most vulnerable and the most difficult to reach. Yet in the US where FAS is more recognised, obstetrician/gynaecologists routinely suggest that women abstain from alcohol during pregnancy. And there are states where a pregnant woman can be prosecuted for causing damage to her unborn child if she orders a drink. In Canada, several provinces post notices in government liquor stores warning women that drinking alcohol while pregnant will lead to foetal deformities.
This advice can seriously backfire and may be doing pregnant women a disservice. In the province of Quebec, a mass media campaign warning that "one drink can hurt your foetus" had to be pulled after a number of women who had consumed a single drink before they realised they were pregnant, began seeking abortions. Moreover, Dr Plant says that although US physicians may be publicly telling their pregnant patients not to drink, privately they will admit that a woman has to be drinking a lot before she will damage her baby.
"There's a real risk that women are going to get punished,' says Plant. "If the alcohol is more important to the woman than her baby, then she needs help rather than scorn. And women need balanced and accurate information because it's scary enough when you're pregnant."
