Just The One?

8th May 2015

Who can forget the legal case that made global headlines last December when an English local authority argued that a child’s life had been so blighted by her mother’s heavy drinking during pregnancy that she deserved to be compensated as if she were the victim of a crime? Kathy Walton couldn’t – and she’s been to talk to those affected by similar scenarios.

The seven-year-old girl in the court case had been born with foetal alcohol syndrome (FAS), the irreversible legacy of her exposure to alcohol in the womb and consequently suffers from delayed physical development, facial deformity, organ damage and learning and behavioural difficulties.

FAS is still under-researched in this country but in the USA and Italy, it is estimated that between 2% and 5% of the general population are affected by it. With the UK currently the binge-drinking capital of Europe, it is reasonable to assume that FAS affects far more than 5% of births here, especially as the number of babies being born with FAS in Britain has increased by almost 40% in the past three years.

Yet while FAS affects only a relatively small number of births, its implications are far-reaching; Canadian figures, for example, indicate that between 23% and 50% of Canada’s prison population were born with the condition.

One woman who is only too familiar with the problems caused by drinking during pregnancy is Susan Fleisher*, founder and chief executive of the charity NOFAS (National Organisation for Foetal Alcohol Syndrome).

Twenty-three years ago, Susan adopted three-year old Caroline, whose problems only came to light at school. “I noticed that Caroline wasn’t learning properly or catching up,” explains Susan. “I kept making excuses, but it wasn’t until I went to a conference for adoptive parents when Caroline was 11 and they talked about FAS, that the alarm bells went off. When they explained that alcohol kills brain cells [in the foetus] and causes a smaller head circumference, I suddenly knew why I couldn’t find a bicycle helmet small enough for Caroline.”

A television producer at the time, Susan went on to make a documentary about the challenges faced by adoptive parents of FAS children once their physical and emotional difficulties become apparent. (Typically, mothers with severe alcohol problems have their children taken from them).

After the film was shown in schools across the country, Susan received so many requests for help that in 2003 she set up NOFAS, with the aims of educating people about the dangers of drinking during pregnancy and supporting all those who are affected, including victims, parents, midwives, social workers and teachers.

“The tragedy for these children is that their problems are often not recognised until they go to school and it’s shocking that so few doctors know about it. It is heartbreaking to see, when some of it can be prevented,” says Susan.

Now 26, Caroline is trying to find a job but has poor short term memory. She suffers from panic attacks, shyness and mood swings and cannot sit still for long. She describes her predicament in a note that Susan has sent me: “I am very lonely sometimes. I try to make friends [but] it is so hard. Nobody understands me.”

Many who drink while pregnant do so to blot out the horrors of their lives, with ante-natal depression, for example (surprisingly as common as post-natal depression), violent partners and the resulting low self-esteem being the main reasons. According to NOFAS, though, while some birth mothers of FAS babies have recurring psychiatric problems, others don’t fit the negative stereotype at all and are loving parents to their affected children. It’s not only women at the lower end of the social scale who call the helpline; the organisation is just as likely to hear from a professional woman – often when she panics that she drank too much over Christmas or at a conference in the first few weeks of her pregnancy.

Tragically, this is precisely the time when the baby’s facial features are forming and when their heart, lungs and liver are developing. Later on in the pregnancy, the development of the central nervous system and brain will be vulnerable to alcohol.

Another woman, Margaret, began fostering her daughter Emma the day after she was born to an alcoholic mother, and later adopted her. Now 26, Emma spent the first two years of her life in and out of hospital with liver disease. In recent years she has needed a wheelchair and her protruding lower jaw and unevenly spaced teeth make it difficult for her to eat.

“Emma has no self-esteem or confidence and doesn’t like strangers. She was bullied all the way through school, even by teachers, which made her feel very isolated. She has behavioural problems and feels that she has no life at all,” says Margaret.

As for Emma, she is angry that her birth mother inflicted so many problems on her. “The kindest thing my mum could have done for me would have been to abort me because I wouldn’t have to live like this,” she says.

And it’s not just the children who struggle; parents of FAS children have to fight every step of the way, as Kate from Hammersmith has discovered. She has four adult children of her own and three adopted children, two of whom have FAS: 14-year-old Mick and 12-year-old Lizzie.

Mick was late reaching his developmental milestones and was aggressive towards other children. He is so obsessed with eating that his food intake has to be monitored at all times. Lizzie has severe facial deformities and both children have learning difficulties, which Kate says are only now being addressed at school, after years of getting nowhere.

“I’ve invested 24/7 in these children, to get them to the best school and bring out the best in them and I’d do it again,” she says, remarkably philosophically. “These children have brought me love and taught me what caring for a child is all about and given me a sense that I’ve done something really good.”

Even so, life for Kate is a seemingly endless battle with the education authorities and the medics (who took a long time to diagnose FAS in both Mick and Lizzie). Hardest of all for her though, has been watching her children become increasingly marginalised.

“It’s heart breaking for me to see this in a child. Other children are invited to birthday parties, but not Mick. He has two friends at school, but they don’t come home and he is not invited to other children’s homes because of his behaviour.”

At the time of writing, the birth mother of the little girl who inspired this article has not been convicted of an offence. However, during an earlier tribunal, she was alleged to have ‘maliciously administered poison so as to endanger life or inflict grievous bodily harm’ (a crime under the Offence Against the Persons Act of 1862) and the case ignited a debate over how the Courts should treat excessive drinking during pregnancy.

Susan, Margaret and Kate all agree that criminalising pregnant women who drink will discourage them from seeking help. Susan, especially, is absolutely clear that men too, need to be informed about the dangers of alcohol during pregnancy. It’s not just a woman’s responsibility.

She also asked me to stress the positives. From time to time she receives encouraging feedback about children, who have, against all the odds, ‘got there’.

“Some of the families in our network are finding that our children are doing much better in their late 20s and 30s. Some are holding jobs and finding partners who understand and are supporting them. I can say that many people with FAS are reaching their milestones, but just later in life. If they get a diagnosis and support, their lives are becoming better and more ‘normal’,” she says, before adding: “I use the word ‘normal’ cautiously.”

Tragically, Margaret fears that it may already be too late for her daughter Emma, who is waiting for a liver transplant operation, which she is unlikely to survive. Margaret is the most outspoken about the harsh realities for FAS children. “These mums are selfish because they are condemning their children to a life of no friends and isolation. [These children] find it hard to mingle, they don’t trust people, they suffer bouts of depression and emotional and behavioural problems. They didn’t ask for this.”

*With the exception of Susan Fleisher, all names have been changed.

Pictures posed by models.

NOFAS helpline: 020 8458 5951 • Email: help@nofas-uk.org

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