Mum’s honest account of daughter’s FASD diagnosis

FASD is the term given for a range of preventable mental and physical disabilities that can be caused when a developing baby is exposed to alcohol in the womb. Karen is bravely speaking out about the risks of drinking in pregnancy and encouraging more honest conversations to help other mums-to-be.

Her plea comes on International FASD Awareness Day, as findings from Balance show that awareness of the Chief Medical Officer’s ‘no alcohol in pregnancy guidance’ is still limited – with nearly four in 10 18-44 year olds (38%) unaware of the advice.

Growing up in a hostile and dangerous environment, a victim of child abuse and domestic violence, Karen sought solace in alcohol, drugs and self-harm. In 1994 she fell pregnant for the second time while in an abusive relationship.

“During my second pregnancy I was nervous and anxious all of the time. I would drink wine or vodka and lemonade as it helped me to relax. There was a lot talked about not eating certain foods in pregnancy and no smoking, but even in the 90s, there was little information and mixed messages about the risks of alcohol. I was anaemic and people would say a Guinness was good for you. They were the kind of myths we were led to believe.

“I grew up around alcohol. No one solved problems in my life – they were just numbed out. I was on the verge of a nervous breakdown, living with an abusive partner, with one daughter and another on the way. I felt worthless and inadequate as a mother, girlfriend and daughter – so I drank.”

When Karen’s daughter was born, she struggled to feed and cried almost constantly. By this time, Karen had left her partner and was bringing up her two young children as a single parent.

“We were often at the doctors or the hospital with my daughter. She had hearing problems and breathing problems. As a toddler, she struggled to give cuddles and kisses. She couldn’t sit still and would throw things around. When we went to play group, her behaviour was very different to the other children. People wouldn’t invite us round to their houses.

“Physically she had small legs, a thin upper lip and smooth philtrum. When she was in school, we were told she had learning and behavioural difficulties and thought it was ADHD (Attention Deficit Hyperactivity Disorder). She had a bad memory and struggled with her speech. It was like she had made up her own language.

“Early on it was apparent that she wasn’t learning from consequences. She would get into trouble, but it just kept happening. We tried all sorts of therapies, but no one knew what to do for the best.”

Karen’s drinking was still there in the background until she hit rock bottom and knew she had to seek help. She became sober when her daughters were 13 and 10, but the issues with her younger daughter only became more apparent.

“When my daughter was a teenager, she was often in accidents and would end up in hospital or in a police cell. She fell into her own problems with alcohol and drugs. It was scary.

“The kids she was hanging round with knew she was vulnerable but would tell her to do something, like steal DVDs, and she would just do it. She had no respect for authority, but I was so worried about her as I knew she was being exploited. She was regularly in trouble with the police and getting ASBOs. The physical problems with her feet, knees, joints, ears and asthma continued too, and her moral judgement just wasn’t there. I didn’t know what to do. To the outside world, she appeared ‘normal’, but she couldn’t hold down relationships or jobs and even now has no concept of time or money.

“She’s 26 now but she struggles with the social cues people take for granted. She will often offend people and has a lack of empathy – but she doesn’t understand and keeps repeating the same mistakes. She has found football and boxing which she enjoys and they help her to stay on track.”

Karen has four children, including two teenagers aged 15 and 11. Her second pregnancy was the only one she drank during, and it has taken her a long time to work through the feelings of guilt.

“It has been hard to get over the guilt. FASD is lifelong but preventable. Nine months is a short time not to drink – compared to a lifetime of hardship for the whole family. Even now, life is chaotic and frightening. No two days are the same, but despite the challenges, my family is doing well and we have a lot to be thankful for.

“A lot of FAS children get lost in the system or misdiagnosed. We only got the diagnosis two years ago even though I was always open and honest about my drinking. I recognised the signs of FASD in my daughter when she was a teenager but it was through the FASD Network, I heard more about the disability which is so often ‘invisible’ in society.”

Today Karen is doing everything she can to raise awareness of the impact the cycle of alcohol abuse has had on her and her family. She is a member of the FASD Network (based in the North East) and regularly gives talks on her experiences. Her first book ‘My Journey Through Hell’ was published earlier this year. She hopes that speaking out will help to break the stigma around the issues and encourage mothers to seek help.

“There is still a lot of shame around drinking in pregnancy. It’s hidden away and isn’t talked about enough. That’s why I decided to break my anonymity and speak out. If you’re pregnant and struggling, I urge you to seek help from your midwife. Don’t keep it a secret. There are amazing people out there who will support you without judgement. I hate the thought of anyone struggling and feeling alone because I’ve been there myself.

“There were days when I didn’t want to get out of bed, but it helps to talk to people who have had similar experiences. I reached a turning point when I was so fed up of feeling ashamed and unable to look people in the eye. The only way was up. Sharing my story gave me my self-respect back. If I’m honest and open and can help one other person, then something positive has come from it.

“When my parents died, I summoned the courage to face the cycle of alcohol abuse I had grown up with through my childhood and into adult life. I decided to own it so I could change it. Alcohol robs people of their confidence, makes them anxious, it destroys communities and it destroys families.

“Through the glamorous marketing of alcohol, we are conditioned to think that it is a necessity. But it is harmful – and can cause lasting damage to your child. I can’t undo what happened and I have to live with that every day.

“My message to anyone who is pregnant or trying for a baby is please don’t drink. You wouldn’t give a baby a vodka or glass of wine, and when the alcohol crosses the placenta, that’s exactly what’s happening. Abstaining from alcohol for nine months is much better than a lifetime of issues. Remember that FASD is a preventable disability. Just don’t do it. It’s not worth the risk.”

The latest guidance updated in 2016 from the Chief Medical Officer, advises 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, the advice also states that women who find out they are pregnant after already having drunk during early pregnancy, should avoid further drinking, but should be aware that the risk of harm is likely to be low if they have drunk only small amounts of alcohol before they knew they were pregnant or during pregnancy.

For any mums who suspect their child may have FASD, the FASD Network UK has a wide range of support available: visit www.fasdnetwork.org