WITHIN half an hour of their baby girl’s birth, Melanie and Cy Chambers were told she had spina bifida, that she would probably not be able to walk, and that she might never talk.

“We were sitting there, saying – pardon?” recalls Melanie. “It was a lot to take in. This was not how our lives were supposed to pan out. Everything had suddenly been turned upside down.”

Glasgow Times:

The UK Government announced this week that folic acid is to be added to UK flour to help prevent spinal birth defects in babies. Neural tube defects, such as spina bifida (abnormal development of the spine) and anencephaly, a life-limiting condition which affects the brain, occur in around 1000 pregnancies per year in Britain.

It is thought that adding folic acid to flour could prevent up to 200 birth defects a year.

For Melanie, whose daughter Ella is now 18, it is a welcome decision, and one which she and many other parents, supported by charity SBH Scotland, have long campaigned for.

“It’s a momentous decision, fantastic news,” she says. “I know some people are against it – I have had comments on social media since I talked about it – but those people don’t live our life. They have never walked in our shoes. Perhaps if they had, it would change their minds.”

Glasgow Times:

Ella agrees: “This is an important thing to do, which will help many families,” she says. “Most people eat bread, don’t they? It’s simple.”

College student, bling queen, force of nature – Ella, who is from Old Drumchapel, is a “tough cookie”.

“She has been through a lot,” says Melanie. “She had surgery as a baby, to fit a shunt in her head to drain excess fluid from the brain, and at the age of 10 endured an 11-hour operation for scoliosis.

“I had no problems when I was pregnant. There were no complications, I was low-risk for everything. I did take folic acid, but it wasn’t enough. So to say this was unexpected is an understatement.”

She adds: “We would not be without Ella. She is incredible, the life and soul of the party and, occasionally, a typical stroppy teenager. But life has not been easy for her, or for us. Ella will never be able to walk, she uses a wheelchair and has life-limiting health problems.”

Melanie pauses, adding with a laugh: “Although the doctors were wrong about one thing. She CAN talk. In fact, she rarely stops.”

Glasgow Times:

Dr Margo Whiteford is the chairperson of Spina Bifida Hydrocephalus (SBH) Scotland who, along with other charities across the UK, have campaigned vigorously for the fortification of flour.

“It has been a long fight – 30 years, in fact – so this is an incredibly important day,” she says. “It started in 1991, when the Medical Research Council did a trial with women who had had a baby with a neural tube defect and were therefore at increased risk in future pregnancies, and it found that folic acid reduced risk by around 70%. A second study, carried out in Hungary on the general population, found that taking folic acid reduced the risk of having a first baby with a neural tube defect, again, by around 70%.

“When folic acid was added to bread in Australia, neural tube defects fell by 14%.”

Whiteford adds: “Women are already advised to take folic acid for at least a month before conception and up to the 12th week of pregnancy, but about half of pregnancies are unplanned and women are not always aware they should take the supplement, or forget to. Neural tube defects happen around the four to six week mark – which is before many women know they are pregnant. So we hope this will make a huge difference.”

Melanie says the support she received from SBH Scotland was “amazing”.

“Where do you go when you get news like that?” she says. “We went to a very dark place. I remember walking from the hospital to the charity’s offices, which were just round the corner from what was then the Queen Mother’s at Yorkhill. I sat there and broke my heart. But I remember the woman we spoke to, Anne, saying – do not write off your child.”

She adds: “I went home and sat in the nursery we had decorated for Ella. The theme was little footprints – beautiful bedding and wallpaper covered in tiny feet. The irony was painful, knowing our baby would never be able to walk.

“None of this has been fair on Ella. And everything we had planned went out the window. We chose not to have another baby, as the risk was just too great.” She adds: “We know families whose babies were diagnosed with spina bifida and did not survive. So yes, this decision is absolutely the right one.”

For more information visit sbhscotland.org.uk