Adoptive mum calls for last orders on Foetal Alcohol Spectrum Disorder
THE adoptive mum of a toddler with Foetal Alcohol Spectrum Disorder (FASD) is calling on mums-to-be to give up alcohol altogether during pregnancy.
Her call comes soon after the UK’s Chief Medical Officers have confirmed official guidance that women who are pregnant or thinking of getting pregnant should avoid alcohol altogether if they want to keep the risks to their baby to a minimum.
FASD, which is estimated to affect 1 in 100 babies every year, is a series of preventable birth defects, both mental and physical, caused by drinking alcohol at any time during pregnancy.
These defects only exist because of prenatal exposure to alcohol. Thirty-four-year-old single mum Libby, who is from the North-East, has been living with the effects of FASD since her two-year-old adopted daughter came into her life just over a year ago. Having worked with vulnerable people and families through her various charity roles, Libby went into the adoption process with an awareness of FASD, knowing she would be able to manage if she was matched with a child who had the condition.
When her daughter first came to live with her she had not been officially diagnosed with FASD, but Libby had a strong feeling that she had the condition because of her physical and emotional behaviour. She also showed some of the facial features associated with FASD.
Libby said: “I was aware there was a chance my daughter could have FASD before I adopted her, but as soon as we got the official diagnosis six months into the adoption, it was a huge relief. I was expecting a long battle to get the support we needed.
“Even though I thought I knew a bit about FASD beforehand, living with the condition is totally different. When you first meet her, my daughter appears like a normal child, but as soon as she’s in a situation she finds difficult to cope with, she’ll react aggressively or get upset. I haven’t slept much at all in the past year. My daughter has a lot of sensory challenges; she finds it hard to cope with noise and will react aggressively towards herself, banging her head and punching herself. She also finds it difficult to make eye contact and her interactions, behaviour and play, aren’t as they should be for a child of her age.
“FASD is not an easy diagnosis to manage. As well as the day-to-day challenges we face together, it’s difficult to accept as FASD is totally preventable. I also know that as she grows up, my daughter will have to come to terms with the fact that she has an irreversible condition that could have been prevented.”
Libby explained: “For me, it’s not about blame, shame and judgement. No one wants to deliberately harm their child. A lot of the time when people have drunk in pregnancy, it’s because they didn’t know they were pregnant.
“But in the same way you wouldn’t give a newborn baby a drink, if you’re pregnant, or even just thinking about becoming pregnant, it’s so important to give up the drink. Just take nine months off. There’s no safe amount of alcohol during pregnancy and there’s no way of knowing how your baby will be affected. Your future with your child is absolutely worth giving up alcohol for.
“Babies with FASD bring so much love, joy and happiness wherever they go; there’s something so sociable about them and they’re genuinely lovely to be around, but they also have to go through so much on a daily basis and I do worry about what the future has in store. When you read stats about people with FASD having mental health issues throughout their lives, getting into crime and struggling to get employment, it’s worrying, but I have to stay positive and take one day at a time.
“We’ve been lucky because we’ve been able to get a diagnosis early. We have a great paediatrician and access to occupational therapy; we can also access plenty of resources and have a lot of support around us.
She added: “We regularly meet up with other FASD families through the FASD Network, which I’d be lost without. But I know many people who just haven’t been able to access the support they need because it’s taken so long to get a diagnosis, and I think it’s so important to raise awareness of the condition because of this.”
Sue Taylor, Partnerships Manager at Balance, the North-East Alcohol Office, said: “There’s very little awareness of FASD, even though it’s the most common, non-genetic form of learning disability in the UK. We believe it’s vital to spread the word about FASD and inform people that while FASD is a lifelong disability which can’t be cured, it is absolutely preventable. Guidelines from the Chief Medical Officers clearly advise women who are pregnant, or trying to conceive, not to drink any alcohol at all and this is the message we want to get out to people.
“The problems caused by alcohol tend to affect the most vulnerable in society and unborn babies are the most vulnerable of all. We urge the Government to ensure that the new CMOs’ guidance appears clearly on all alcohol products, is communicated routinely via the healthcare system and is promoted to the public via the media.”
Maria Catterick, from the FASD Network, said: “FASD Day is an opportunity to clarify the message that alcohol has the ability to permanently damage children who have been exposed to it before birth. We welcome the clarity from the Chief Medical Officer who states that ‘if you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all’. We support many families affected by this condition and want to enable every child to get the best start in life by ensuring that people are aware that pregnancy and alcohol don’t mix.”
Anyone who is concerned about their alcohol intake while pregnant, or wants to find out more about FASD, should speak to their midwife.