More than 8,000 UK children are diagnosed with brain damage because their mothers drank alcohol during pregnancy. Nicky Solloway reports
Though she was born six weeks early, Charlotte appeared to be a healthy baby when Sara and her husband adopted her.
She was 13 months old when she was placed for adoption and, though she still weighed only 17lb, doctors believed this was because she was born so premature. But then the problems began.
“She was still on baby food with lumps in it because she would choke all the time,” says Sara, from North Yorkshire. “She wouldn’t settle, wouldn’t go to sleep unless cuddled to sleep. She would keep falling over. It was 18 months before she could stand while holding on to some furniture.”
Sara, 38, and her husband, who have since separated, also adopted Charlotte’s sister, Bethany. Doctors believed Charlotte’s problems were caused by global developmental delay and she was given speech and language therapy.
“As she got older she was too disruptive for the group sessions,” recalls Sara. “She was very, very clingy and wouldn’t leave my knee. She couldn’t sit still and was very possessive over all the toys. I thought she might have dyspraxia because she was so clumsy and having problems with her motor neurone control.”
Then a television programme alerted Sara to the possibility of foetal alcohol spectrum disorder (FASD), an umbrella term for a range of conditions caused by drinking alcohol during pregnancy. The effects can be physical – including particular facial characteristics – and may also cause problems with physical and emotional development and poor memory or a short attention span.
“Both of mine have all the classic facial features and it ticked all the boxes. I was already liaising with the school paediatrician about a diagnosis of dyspraxia but when I heard about foetal alcohol spectrum I spoke to the council that had placed the children and they went back out and visited the birth family and they basically said the mother was drinking all the way through.”
Sara took Charlotte back to her GP. “She hadn’t come across FASD before or at least hadn’t diagnosed a child with it. You find that a lot.”
Charlotte, now nine, and Bethany, eight, were referred to a specialist at Airedale Hospital, Keighley, in 2010 who confirmed the diagnosis.
Around 8,000 new cases of FASD are diagnosed each year.
Adoptive mother Julia Brown, who is originally from Leeds, set up the FASD Trust in 2007 after discovering her daughter had the disorder.
“We primarily exist to support those that are affected. We run support groups like the one in Leeds where families can meet up with other families.”
The FASD Trust is calling on the Government to warn women that drinking alcohol during pregnancy has the potential to cause permanent brain damage and birth defects in their babies.
“We just need a clear blanket ban – no intake equals no risk. We’re the only country in the world that is arguing around what is a safe level. We don’t say for example to a lady who smokes if you can’t pack it in don’t worry you can have two or three cigarettes a day. We just say you shouldn’t be doing it full stop. It’s not good and it’s the same with alcohol.”
Current UK guidance advises women to avoid all alcohol, but that if they choose to drink they should limit consumption to one or two units once or twice a week.
The trust believes this is a mixed message. “That’s the big mistake people make,” says Julia. “People wrongly assume it only affects the children of alcoholics and hard drinkers. But even overdoing it on one or two occasions can affect the child.”
The trust, which has the support of nearly 70 medical professionals, is campaigning for earlier diagnosis as well as better education and awareness of the condition.
Lynda Hill, and her husband, Andy, both 50, from Halifax are caring for their 19-month-old grandson, Jacob, who has partial FASD. He would have gone into care had his grandparents not offered to look after him.
Lynda, who works as an education welfare officer, says she knew her stepson’s girlfriend was a heavy drinker but she hadn’t realised how badly it would affect the baby, who they have a Special Guardianship Order for.
“Doing the job I do I see a lot of children going into care or living in homes and we thought at least if we look after him he’s kept in the family,” she added. “But neither of us expected it to be as hard as it is. Though we had prepared ourselves, we hadn’t realized it would be this difficult.
“He’s hyperactive, he doesn’t sleep and his attention span is nearly zero. He’s very irritable. You can’t sit still for two minutes with him. He won’t sit and play with a normal toy, he’s got to be either climbing or pulling the curtains down, he is constantly on the go and will not sit still at all.”
Lynda says he also appears to have a very low immune system, which was picked up by staff at the nursery he attends three mornings a week. The paediatrician diagnosed Jacob with partial FASD this month.
“We didn’t go into this blind but I need more support and more information,” says Lynda, who would like help to set up a support group in Calderdale.
“I’m sure there must be other grandparents, parents and relatives in a similar boat to us so information about how to set up a support group would be fantastic.”
As for Charlotte and her sister, Sara is hoping that they will both go to a specialist educational school.
“You can soon tell if my eldest has done too much at school because when she comes home she’ll have meltdowns. She’ll go rampaging through the house, screaming and slamming doors. She doesn’t know how to deal with it all.”
FOSTER CARER LANDS BIG SOCIETY AWARD
A foster carer from Stockton who set up the FASD network for families affected by Foetal Alcohol Spectrum Disorder has just won the Prime Minister’s Big Society Award.
Maria Catterick, who has cared for 26 children over nine years, received the accolade for the support she has given young people and for raising awareness of the disorder.
About 70 per cent of children with FASD go through foster care or adoption and the FASD network has helped educate teachers, social workers and other professionals about their needs.
Visit www.fasdtrust.co.uk or www.fasdnetwork.org
To contact the Leeds support group, email Yorkshire@fasdtrust.co.uk