Foetal alcohol syndrome: Drink destroyed my life

Matthew Verity was the first child in Britain to be diagnosed with foetal alcohol syndrome. As he reaches 30, Tanith Carey hears his remarkable story

Lists are how Matthew Verity gets through the day. From the moment he wakes up, he uses notes pinned up around his flat to remind him what he needs to do to get dressed, to make breakfast, to leave the house. Yet another list is needed negotiate his way around the supermarket. Starting at the bread counter, he puts each item in his basket in exactly the same order each time. Once, when his local Morrison's changed its layout, Matthew was so overwhelmed he left without buying anything.

This week, Matthew will turn 30. As he struggles to live on his own, he is painfully aware how different his life would have been had his birth mother sought help for her binge-drinking.

In 1977, Matthew was the first British baby to be diagnosed with foetal alcohol spectrum disorder. The damage to his brain in the womb means he suffers from learning difficulties, emotional problems like immaturity, and obsessive behaviour. Up to 7,500 babies are born every year in Britain displaying some of the symptoms of FASD – more than are born with muscular dystrophy, spina bifida, HIV and Down's Syndrome combined.

Earlier this year, the Department of Health responded to the growing concern over rising levels of drinking among women. Instead of saying that mothers-to-be could safely have two units of alcohol twice a week, it advised them to drink nothing at all. The move finally brought Britain into line with the US, France, Canada, New Zealand and Australia.

Matthew looks like many other young men his age, although his head is small for his body, one of the many physical effects of FASD, which can also include heart, skeleton and facial abnormalities. "I can only cope with one thing at a time or it's too overwhelming," he says. "I can remember my family's car number plates from the last 15 years, but not whether I locked my car door 30 seconds ago."

Just as difficult is Matthew's social isolation. Those with FASD can't interpret facial expressions or body language. In company, Matthew can be over-familiar with people he doesn't know well. "I can't relate to anyone," he says. "When I'm on my own, I'm dying to be with other people. But when I'm with around other people, I wish I was on my own again."

Two weeks after his birth in Lincolnshire, Matthew was taken into care. His mother was a former teacher called Maureen, who was also a secret binge-drinker. By the time her husband found out, she was four months pregnant and much of the damage had been done.

Matthew was born weighing just under 6lbs,. He was, in his own words, "a runt, just skin and bone". Damage to his nervous system meant he didn't respond to stimuli or even cry for the first year of his life. He was just a few months old when he was referred to a specialist child development unit at Peterborough. There, doctors confirmed he had FASD, a term which had recently been coined by doctors in the US. "Every one of my milestones was late," says Matthew, who now lives in Stamford. "I didn't smile until I was a year old. I was three before I sat up and four before I walked."

Matthew was fostered as a baby and adopted at seven. Maureen – who continued to drink – faded from his life. Thanks to his new family, Matthew's progress has been remarkable. He is articulate and self-aware. But he also suffers from fragmented vision in one eye and chronic short-sightedness. It has given him a "blank" look, which makes it even harder to relate. "That's the thing about FASD," says Janet. "It damages in little ways. He's like a pot that's cracked."

Matthew's last job as an IT technician ended after four years last year. Matthew says: "I have problems remembering tasks I have done. When I couldn't remember the following week how I had done something the week before, the people at work thought I was lazy. I got called 'shit for brains'. My mum and I tried to explain but they looked at us as if FASD was an excuse. In the end I was just left sitting a desk with nothing to do. All my work was taken away from me."

Matthew has never been in a proper relationship. A few years ago he thought he had made a breakthrough when he started to chatting to a younger man over the internet. Recognising how vulnerable Matthew was, the "friend" started pressuring him for £5,000. Matthew's naivety meant he kept it a secret, but when the money didn't materialise, the youth waited outside his flat, tied him up and assaulted him. It was a hard lesson, but a useful one for Matthew, who has to learn who he can trust. "I may be 30 but I am 15 in my head," he says.

Despite Matthew's early diagnosis, Janet was told little about the outcome of FASD when she first took him in, except that he would be "backward". Every week at the child development unit, he was observed at play by doctors trying to find out more about FASD through two-way mirrors. As she observes: "I am sure they learnt a lot, but I don't think he did."

It is only in the last four years, as research in Canada has begun to unravel some of the effects of the brain damage on victims' personalities, that Janet has started to understand him. She says: "When he was little, he would line up stones or make circles with string for hours on end. My abiding image of Matthew is at his school sports day. When the whistle blew for the egg-and-spoon race, Matthew was left glued to the spot. At eight years old, he came home and could not sit down. I found that the other boys had been kicking his backside all day long. There has been a lot of cruelty."

It was in Matthew's late teenage years that the gulf really started to open up. As his peers forged careers and relationships, his social and intellectual limitations became more obvious. Occasionally he would go to the pub, where he would seize on someone who he had just chatted to as his new best friend. Unable to understand that they wanted him to back off, he would come home covered in beer or with his glasses smashed. Against the odds, Matthew got two A to C grade GSCEs and also a BTec national diploma in stage management. After six attempts, he also passed his driving test. He dreamed of a career in the theatre – and even landed a place at university. He ended up shutting himself in his room because he couldn't cope with the noise or the people. He lasted a term before his parents realised he was having a nervous breakdown.

"My heart bleeds for him," says Janet. "But he is very stoical. He gets knocked down but he keeps picking himself up again. Other people in his FASD support group are amazed by what he has achieved, but it's been a steep learning curve. He is very bright and very articulate – but I have I have to keep reminding him of what's realistic for him and what's not. He's still clingy and always wants to give me a hug and hold my hand – although it's not always appropriate." Her voice trails off as she adds: "When you think what he could have been..."

Matthew also wonders what his life would be like if his birth mother had not drunk. "I would have stayed on to university – and had kids. But that won't happen now. I feel like the roadrunner in those cartoons, running headlong off a cliff, and then looking down to find the ground beneath my feet is gone."

Matthew is also unsure what the future holds. He is looking for another job where he can use his hands, and he sings regularly in a church choir. He hopes he has found his calling by speaking in public about what's it like to live with FASD.

Based on WHO estimates, there could be as many as 450,000 people living with the disorder in Britain. Susan Fleisher of the National Association on Foetal Alcohol Syndrome believes it could explain why some people turn to crime, and is worried by the legions of young women who regularly get off their heads on alcohol. "We are seeing children at nursery with attention deficit disorder who could be the products of mothers who had a binge drink three years earlier, before they knew they were pregnant."

A recent study by baby charity Tommy's revealed two in five women continue to drink while pregnant. Yet it may take only a moderate amount of drink to have a lifelong effect. According to Dr Raja Mukherjee, a psychiatrist specialising in FASD: "The only safe level is no alcohol at all. There are very few conditions in medicine that are entirely preventable. This is one."

Now Matthew hopes that by being the first adult to come out about what life is like with FASD, he will bring the subject into the national consciousness. "When I read the figures about the percentage of pregnant women that are still drinking, I don't feel anger. I just feel utter despair. With every drink, my birth mother sapped me of my ability to live a normal life. I don't want that to happen to any other child."

Alcohol and the unborn child

* Alcohol can more dangerous than cocaine or heroin to an unborn child, according to experts.

* Alcohol molecules are so small that they pass through the placenta very easily, where they permanently kill off nerve endings and the connections between the brain cells.

* In the most severe cases, women who drink heavily give birth to babies with Foetal Alcohol Syndrome.

* Symptoms include low birth weight and slow growth; misshapen ears; small slit-like eyes; poor development of optic nerve; short-sightedness; a flattened philtrum (linking the nose to the mouth); heart and skeletal defects; a small head, small jaw and small, flat cheeks; a thin upper lip and small teeth; severe retardation.

* In its less severe form, babies can also show many of the signs of Foetal Alcohol Spectrum Disorder. Symptoms include lower IQ, poor short-term memory and problems with abstract concepts such as maths; immature behaviour; hyperactivity; bad coordination and problems with social relationships.

* How alcohol affects your baby depends on the stage of pregnancy, which parts of the baby are developing, the mother's weight and how good her body is at dealing with alcohol. The scale of the damage will also be down to genes – some babies are less vulnerable than others.

* Heavy drinking during the first three months is more likely to lead to physical deformities because the baby's face is forming. Drinking in the third trimester, when the nervous system is still developing, can damage your baby's IQ and brain.

* The National Association on Foetal Alcohol Syndrome helpline 020-8458 5951