Adoptive mum speaks out about risks of drinking in pregnancy
An adoptive County Durham mum who devotes her life to “three little whirlwinds” is this week urging mums-to-be across the country to recognise the issues faced by children whose development has been harmed by alcohol.
Clare Devanney, from County Durham, spoke out in advance of International FASD Day (Sept 9) about Foetal Alcohol Spectrum Disorders (FASD) – a term given for a range of mental and physical disabilities that can be caused when a developing baby in the womb is exposed to alcohol.
It is estimated that just over one in 100 of all babies born may have some form of FASD – nearly one baby a day in the North East. New research suggests British mums-to-be are among the most likely in the world to drink during pregnancy and four times more children in the UK are suffering from alcohol-related birth defects than the global average.
Clare adopted three siblings from care who were all later diagnosed with FASD, a daughter aged 10 and two sons aged 11 and 12.
She said: “With FASD Day approaching I wanted to speak out as if my story can convince one woman not to drink during pregnancy it will be worth it.
“Looking at my children, you would not know physically that they have FASD. Our diagnosis only came last year and our children had a difficult life with the dots not being joined up and nobody really understanding why they were behaving the way they were. When we adopted from care, we expected there might be some emotional problems or developmental delays but FASD is often an invisible disability. You can’t always see it’s there, but end up faced with some impossible behaviours.
“The best piece of advice I was given was to “think toddler” – that is pretty difficult in a situation with three pre-adolescents who are quite boisterous.
“I pushed to get it investigated because school was becoming an issue. One of the things about children with FASD is that children often act a lot younger than they are, so the chronological age doesn’t match the physical and cognitive age. I believe there must be hundreds of thousands of children out there who live with it and aren’t diagnosed and these children are often written off with behavioural problems as naughty or disruptive but they can’t help it – and that’s the scariest part.
“What’s shocked me researching all about FASD is the physical impact – we are now starting to see the impact on their sight, hearing, joints and, teeth. You don’t join it all up but it pieces together. It shocked me seeing a 40 week timeline of pregnancy and seeing what develops at each week and the impact of alcohol consumption on each of these weeks.
“I think all women should be able to see that as I think a lot of different choices would be made if there is the smallest chance of a child having a physical or learning disability, or problems with sight, resulting in them struggling through education. I’m really lucky the schools I work with are so open to taking on board our requests – but that liaison is a daily part of my life to help them.
She said: “The children are glorious – so creative and empathetic. There is a quirky beautiful side to the spectrum – but there is no filter. They are very naive and trusting which is a huge worry when they grow older. They are still so childlike at 11 and 12. Because they look normal, it’s difficult to not get cross.
“The older the children are getting, the more they do get frustrated and that can be heart breaking because they are very clever, and ask why things have happened to them.
“When they’re having an episode it can be angry and aggressive behaviour and they find it difficult to stop – they need to feel safe and secure to be able to calm themselves out of it.”
But she said: "I would do it all again in a heartbeat but it would be such a different story with an early diagnosis meaning the children would get the support they needed from the outset.
“The statistics are scary for children who have been in the care system but also for children who have FASD. School can be terrifying for them – primary is easier as it is a smaller environment, but in secondary school they are in a class with children nearly twice their mental age. They can be silly and inappropriate – children with FASD will often end up disengaging with education as they can be clever, but can’t sit still enough to finish a piece of work. That is where statistics for lower life expectancy come into play and children with FASD can get into a cycle of alcohol and drug abuse and suicide.
“It’s very difficult for children with FASD to socialise appropriately. It can mean children not getting invited to parties, or friends’ houses to play. It’s any mother’s worst nightmare – and when it was happening to our children we didn’t have a diagnosis. It is heart breaking and soul destroying.
“I have a window of opportunity to keep my children on the right path for the life I want them to have and they deserve. I admire them more than anybody else in my life for what they’ve already conquered. It is exhausting but I do feel privileged to be in this position.
“We’re lucky our schools very much see their role as part of the process of staying engaged with education. Education really is the key.
“I do sometimes wish I could swap their lives and for their daily life not to be so difficult. I would like people to be able to live a day in their life. I think people would make a different choice.
“There is lots of conflicting advice out there – but I don’t believe any mother if faced with a list of the physical and mental problems FASD can cause would be willing to take that risk in a 9 month period.”
New guidelines from the Chief Medical Officer in 2016 advise women that if they are pregnant or planning a pregnancy, the safest approach is not to drink alcohol at all, to keep risks to the baby to a minimum.
However, they also advise that women who find out they are pregnant after already having drunk during early pregnancy, should avoid further drinking, but should be aware that it is unlikely in most cases that their baby has been affected.
Susan Taylor, Partnerships Manager at Balance said: “Clare’s story is incredibly inspiring but also shows how children with FASD can be seriously disadvantaged through childhood and life.
“The latest Chief Medical Officer guidance is clear: to keep risks to a minimum, the safest approach is not to drink during pregnancy. People need to be aware of the advice and Clare is passionate in putting that message across.
“It’s equally important to reassure women that if they have drunk small amounts of alcohol before they knew they were pregnant, the risk of harm to the baby is likely to be low. If a woman is worried about having drunk alcohol during pregnancy they are best advised to talk to their doctor or midwife.”
About FASD
• FASD Day is the 9th day of the 9th month, chosen to reflect the 9 months of pregnancy when if alcohol is avoided.
• Foetal Alcohol Spectrum Disorders is a series of preventable birth defects caused entirely by drinking alcohol at any time during a pregnancy.
• Symptoms can include vision impairment, sleep problems, heart defects, liver problems, a poor immune system, speech & language delays through to memory problems and behavioural problems such as impulsivity, hyperactivity and inappropriate social behaviour.
• The term "Spectrum" is used because each individual with FASD may have some or all of a spectrum of mental and physical challenges. In addition each individual with FASD may have these challenges to a degree or "spectrum" from mild to very severe.
• FASDs are caused by a woman drinking alcohol during pregnancy. Alcohol in the mother’s blood passes to the baby through the umbilical cord. When a woman drinks alcohol, so does her baby.
• There is no known safe amount of alcohol during pregnancy or when trying to get pregnant