Hellen Fernie stopped drinking as soon as she learned she was pregnant – but at 21 weeks the damage was already done.
Her 14-year-old son, born despite Hellen being told she couldn’t have children, was diagnosed with foetal alcohol spectrum disorder (FASD) last year.
It can cause hyperactivity, learning difficulties and growth problems and occurs when alcohol in the mother’s blood passes to her baby through the placenta.
Today marks the syndrome’s 20th global awareness day and Hellen is determined to stamp out the stigma faced by birth mothers of children with FASD.
Hellen told STV News: “I was in a bad place, I was drinking… I found out I was pregnant at 21 weeks. I stopped drinking as soon as I found out, but obviously the damage was done.
“A lot of FASD kids lash out with the frustration because of the way their brain works, it’s not like our brain, it’s like spaghetti junction. They can get psychosis behaviours, I was at the stage that I was getting assaulted on a regular basis.
“I want the birth mums to come out of the shadows, for the best interest of their children, to give them what they need.
“Don’t be ashamed – you’re human, you made a mistake, we’re all human. But it’s what you learn from that mistake, it’s how you change it.”
Ailsa Clarke adopted her six-year-old son when he was a baby. He has just started school and is doing well.
But she worries about what the future holds for her son and others living with FASD.
Ailsa, who has taken a career break from teaching to focus on her son, said: “It’s a combination of anger, worry, in fact extreme anxiety, because the more you read about it, the more you realise that if you don’t get early diagnosis, the secondary disabilities are crippling and potentially life-ending.
“It can end in suicide or prison or homelessness, or drug and alcohol addiction, and the cycle going round again.
“The behaviours overlap with loads of different conditions. This is neurological – this is brain damage, this is a brain injury.”
FASD is thought to be four times more common than autism – but it’s believed to be drastically under-diagnosed.
Earlier this year Adoption UK set up its FASD Hub, offering support and advice about the condition for adoptive families in Scotland.
It is now extending the service to birth parents to ensure everyone affected by FASD is included.
The charity says that since the hub was set up in June, it has had a large rise in the number of calls to its helpline.
Within six weeks of its opening, it received 40 queries from parents seeking advice about handling FASD and its varied symptoms.
New clinical guidelines for FASD were recently published in Scotland, but there are still concerns that there is no clear path for ongoing support and treatment.
Health professionals are keen to stress that the condition and its causes do not discriminate against age or class.
Michelle Kirkpatrick is in a joint role with NHS Lothian and the Edinburgh Council, leading a team which supports pregnant women and new parents who battle substance abuse.
Her “PrePare” team also trains teachers and foster carers to better handle challenging FASD behaviours.
She said: “The problem with alcohol is that it’s legal, it’s acceptable, and it’s everywhere. If you’ve got a grey message, then you’ve not got women having a clear understanding of what’s ok for them and what’s not ok for them.
“The bottom line is, if you want to drink, don’t get pregnant, and if you want to get pregnant, don’t drink.”