CRADLING her tiny frame the first time, Julia Brown and husband Simon were suddenly proud parents of a beautiful baby girl.

The couple knew their adoptive daughter Niamh had developmental delays, but were hopeful she would grow out of it in a loving home.

Mrs Brown said: "People talk about attachment and trauma and the fact the child needs to settle in, so symptoms tend to be put down to them being adopted, rather than understanding that we are dealing with disability."

The couple, who adopted after learning they were unable to have their own children, continued to face challenges as the years ticked by.

At nursery Niamh continued to struggle alongside others her age; unable to grip a pencil or dress herself.

Staff broke the news to her parents that her special needs were too testing for them to cope with.

Mrs Brown, 45, said: "My husband and I looked at each other and said 'what are they talking about?'

"Niamh walked late and talked late and had difficulty sleeping at night. She struggled to feed but was hungry all the time. We put that down to psychological stuff."

Doctors suspected Niamh's behaviour might be down to autism or ADHD, but she was finally diagnosed at five-years-old with Foetal Alcohol Spectrum Disorder (FASD).

The condition covers a range of mental and physical disabilities that people are born with, due to pre-natal alcohol exposure: when birth mothers drink during pregnancy.

Mrs Brown said: "For us the diagnosis was a relief. It made things clear.

"If it goes undiagnosed a lot of people think FASD is a behaviour problem or mental health illness.

"Parents are struggling, they know something's not right.

"If you know what's underneath it all you understand - it's a permanent disability.

"Often these children fall between the cracks."

Relieved yet unsure of their next step, the couple struggled to find help.

Mrs Brown said: "There was no support groups locally. There was no official information; no knowledge of where to go or what to do now."

They were driven to set up their own support group in Witney, which grew when Eynsham company Web Boutiques offered to make them a website for free.

Mrs Brown said their movement began to 'mushroom' into The FASD Trust, which now has almost 50 support groups across the country and runs a helpline for people affected by FASD.

She said: "It's just snowballed. It started from our kitchen table and now we have offices and four part-time staff."

The organisation's offices are in Marston Street just off Cowley Road in East Oxford, and has celebrated many achievements since it registered as a charity in July 2008.

After hosting a special conference in Witney in 2011, The FASD Trust produced a 45-page paper in 2011 defining FASD, setting out diagnostic criteria and detailing suitable care pathways.

It is backed by 36 NHS trusts, 70 medics and the British Medical Association.

Mrs Brown has also co-authored a bestselling book with Dr Mary Mather about parenting a child with FASD, which the book describes as an 'invisible disability'.

A minority of people with FASD also carry physical traits, with facial features such as small eyes, a thin upper lip and no groove between their nose and lips.

The Browns now have three adoptive children, including 18-year-old Niamh. 

Two of the three have been diagnosed with FASD.

Mrs Brown said a wide support network helps to connect people learning to cope with the condition.

She said: "My children know they are not the only ones - they have got lots of friends who are just the same.

"It reduces the sense of isolation and removes that sense of frustration over certain things they can't do."

Among the key aims of the trust, which also feeds into a parliamentary committee about FASD, is to raise awareness about the dangers of alcohol during pregnancy.

Though largely thought of as a taboo, scientific research released last year suggested four in 10 British women drink during pregnancy.

Mrs Brown admitted there were some confusing messages, including a recent study suggesting small amounts were safe to drink.

But she stressed: "If you don't drink at all when you are pregnant, you eliminate all the risks.

"When you're pregnant, every drop you drink, your baby drinks too.

"When they are born nobody would dream of giving a baby a glass of champagne, yet when you're pregnant and drinking a glass, so is your baby.

"In the first three months it increases your chances of having a miscarriage or still birth or a premature birth. In the later months it's very dangerous; alcohol particularly interferes with growth and brain development."

Delivering a stark warning to mums-to-be, she said: "There is no safe time to drink."