NIAMH Brown’s endearing friendliness made me smile. She is a pretty 13-year-old in trendy white jeans and T-shirt, and she wants my attention. Niamh hides a tragic secret beneath her bright and bubbly exterior.

She suffers from foetal alcohol spectrum disorder (FASD) and she will never be able to live a normal life.

But she is safe and fiercely loved by her adoptive parents Simon and Julia Brown, whose experiences with Niamh led them to set up the FASD Trust, based in Charlbury, providing family support and raising awareness.

“The very sad fact is that Niamh’s unquestioning friendliness and trust of strangers is one of the many things that places her at risk in the outside world,” said Julia, 41.

“When we walk through the village everyone says ‘Hi Niamh’, but she knows nothing about stranger danger.”

Pregnant women have always been told to cut out alcohol – and these days the message is pushed home harder than ever, because the risks are now better understood.

When the mother-to-be drinks, so does her unborn baby – it takes one minute for it to reach the baby and he or she will have exactly the same blood alcohol content. It also stays in the baby longer than in the mother.

This is shocking information that cannot and should not be ignored – and the Browns are kept very busy indeed dealing with the fallout and working on prevention.

Babies born to heavy drinkers may have had their brains damaged forever – they may be small and not grow normally, their faces may look different – with small eyes and thin lips – they may have trouble seeing, hearing or speaking, and they might have heart or kidney problems.

But new research has shown even drinking small amounts of alcohol can affect a baby’s brain. The outcome can be delays in development, learning problems, impulsiveness, hyperactivity and out of control behaviour.

Julia and Simon have gradually become experts in the field over the past 12 years after they adopted Niamh when she was a baby.

Julia said: “She was very underweight, about the same size as a baby aged four to six months. She couldn’t feed herself, and she kept being ill.

“As it was our first experience of a baby, we thought it was normal, but when she went to pre-school and we compared her with other children, it dawned on us that she was very different.

“When we adopted Niamh we knew her background, but no one put two and two together. We were living in London, and we were referred to St Thomas’s Hospital, where they eventually told us she had FASD, thank you and goodbye. That was it.

“We had visited the Charlbury area on holiday and we liked it. We were worried about Niamh’s schooling, and we knew there was the Springfield School in Witney, which takes children with special needs, so we moved here eight years ago. I was able to commute to work at my central London office.”

Unfortunately, things did not work out for Niamh at Springfield School, and Simon, 44, who used to work as a picture researcher, has now taken over her schooling.

He is her full-time carer and also a foster carer for Oxfordshire Social Services. The Browns also have a foster child who has been with them for a year.

As well as mainstream fostering, Simon is also involved with the multi-dimensional fostering programme in Oxfordshire – difficult children with challenging behaviour.

“There are not a lot of male foster carers, so I have been encouraged to get more involved,” he said. “The kids and I just all do normal things together – Tesco and Tumble Tots. Niamh is very loveable, but she can be hard work, and she still gets the teenage strops. Out and about she can get overwhelmed by new things. At home she is calmer and quieter.”

When Niamh was diagnosed with FASD, there was no co-ordinated source of information, support or advice for parents and carers.

The Browns decided that something must be done and they set out to do what they could.

“We worked from our laptops at the kitchen table, and that is how it all started,” Julia explained.

That mushroomed swiftly into the FASD Trust, the national charity founded seven years ago by the Browns.

Julia now works full-time for the trust, from an office just outside Charlbury, running a network of family support groups across the UK, a telephone helpline and website, training seminars and providing information for teachers and professionals involved in the care of those with FASD, working towards better provision for the children, and promoting awareness.

“Many people are totally exhausted and at the end of their tether when they get to us — and we can empathise and help,” said Julia.

“Often these children can be very intelligent, but they have no social skills, memory problems and struggle to organise themselves. Parents come to us who are quite desperate.”

Julia and Simon will need to be there for Niamh all her life.

“Her problems will be life-long, but not life-limiting, and she will never be able to live independently,” Julia said.

“She says she want to grow up, have a baby and drive a pink sports car. She says she is a princess and wants to be a supermodel and sing like Hannah Montana.

“We always focus on what she can do – she can have a car, but someone else will be driving it for her.”

The message is clear, and one that the FASD Trust continues to promote – no alcohol is the best and safest choice for pregnant women.

  • For more information about the work of the FASD Trust, see fasdtrust.co.uk or call 01608 811599.