'I would hate anyone to go through what I did with Matthew'

She talks to Women's Editor Christen Pears.

ALMOST from the start of her pregnancy, Sue Calvert knew there was something wrong. Sitting in her office at Calvert's Carpets in Thirsk, the business she runs with her husband Bill, she remembers the sensation as if it had been yesterday and not 20 years ago.

"When I had my first son, James, everything went really smoothly but right from the start, I didn't feel well with this one. In those days there was no scanning. Each time I went back to the doctor, all he said was that two pregnancies were never the same. He basically told me that I was a hypochondriac and that I was having a very large baby, and then twins."

Despite reassurances, Sue was convinced there was a problem. During the last few weeks of her pregnancy, she began to feel really ill; there was a strong metallic taste in her mouth and she was incredibly bloated.

"I was like Mr Blobby, which was awful enough, but the thing that concerned me most was that I never felt the baby kick. The movement I did get was when my whole body shook."

She went for a second opinion two weeks before birth and was given an X-ray. She was told her baby had spina bifida and would be paralysed from the waist downwards. "The shock was unbelievable but I wasn't hysterical," she says. "All I kept thinking was that I had been right all along."

Spina bifida occurs when one or more of the vertebrae fail to form properly, leaving a gap or split so the central nervous system that runs down the middle is unprotected.

The condition varies in severity from person to person. Some forms are so slight that people aren't even aware they have it but in the most severe cases, it can cause paralysis. It can also lead to hydrocephalus - fluid on the brain.

Sue gave birth to a son, Matthew, but his case was severe and he died soon afterwards.

"It was a terrible experience. I came out of hospital with no baby. A lot of people told me to pull myself together and get over it. Nobody wanted to speak about it and I went back to work to forget about it. Of course you never do but it's one way of coping with what's happened to you."

A few weeks after Matthew's death, Sue was contacted by Professor Richard Smethers. Backed by the medical charity, Action Research, he had been looking into the causes of spina bifida since 1970 and wanted to know whether Sue would be willing to take part in a research project. Matthew's death was still too painful, although she did keep the letter, pushing it to the back of a drawer.

It wasn't until she and Bill decided to try for another child that she contacted Prof Smethers. "I had been told there was a chance the baby could be born with spina bifida so I wanted to do everything I could to prevent it," says Sue.

She was invited to take part in a pioneering trial of folic acid. All pregnant women are now advised to take folic acid but at the time it was revolutionary.

Spina bifida had always been considered a working class disease because it tended to affect people with poor diet. Prof Smethers noticed the connection and began to look at the causes.

"It's such a simple thing but it makes an enormous difference," says Sue. "Women should take folic acid even before they become pregnant - not just for spina bifida. It helps prevent hair lips and cleft palates as well. When I became pregnant with Matthew, I had been quite poorly and I realise now I shouldn't have become pregnant at the time."

Sue's second son, William, was born healthy, and two years later, Sue joined Thirsk Action Research Group to help raise money and awareness.

Now known as Action Medical Research, the charity was founded by Duncan Guthrie in 1952 when his 18-month-old daughter, Janet, was diagnosed with polio. He was so appalled by the lack of knowledge about the disease that he used the 7s 6d he kept in a tobacco tin under his bed to set up a new charity - the National Fund for Poliomyelitis Research.

The research funded by the charity led to the development of a vaccine which virtually eradicated the disease worldwide.

Under a new name, Action Research, it went from strength to strength, pioneering hip replacement surgery, testing the first rubella vaccine and breakthroughs in the diagnosis and treatment of epilepsy, diabetes, Alzheimer's and other diseases.

Eighteen months after joining the Thirsk branch, Sue and her friend Jane Burgess took over as joint chairmen and changed the name to Thirsk Action Group. Since then, they have raised almost £200,000. This year's Ball at the Hall in Northallerton raised £10,000 alone.

The group has also supported local charities, including the Lambert Hospital in Thirsk and an holistic cancer unit on Teesside.

"I think when you have been affected by something yourself, you become particularly dedicated to your charity. I would hate anyone to go through what I did with Matthew and I do anything I can to raise awareness and money for research."

* Contact Sue on (01845) 522 967 or visit the Action Medical Research website at www.action.org.uk.