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Why Belfast mum is urging all women to take folic acid

Despite taking folic acid early in her pregnancy - this Belfast mum's little girl was born with spina bifida

By Helen Carson

Belfast mother-of-two Louise Boyd is urging all women of child-bearing age to take folic acid and not wait until they are planning a pregnancy.

Louise knows the importance of the simple supplement all too well, having taken folic acid within weeks of discovering she was pregnant with her second daughter.

Despite her vigilance, though, her youngest child, Sophie, now four, was born with spina bifida.

Now, a new campaign by Safefood is calling on all sexually active women to take folic acid in a bid to prevent babies being born with neural tube defects (NTDs), such as spina bifida.

Medical experts have warned the crucial developmental stage for the spinal cord is three weeks after conception, therefore taking folic acid at the correct time is essential in the prevention of neural tube defects. Louise, who lives in Dundonald with her husband, Peter, and their daughters Amy (7) and Sophie, says she began taking folic acid two weeks into her pregnancy with Sophie, and the couple got some heartbreaking news at their 20-week scan at the hospital.

"I took folic acid when I was two weeks pregnant with our first daughter, Amy, and it was the same when I was expecting Sophie," she says.

"I was aware of the importance of taking folic acid during the early stages of pregnancy. I had read about the significance of taking it and I was familiar with the terminology - neural tube defects. But I didn't really understand what it was like until it happened to us. I didn't really know what it meant to the child."

During the scan at the Ulster Hospital, the couple became concerned that maybe something was not right with their baby's development.

"The radiographer was doing the scan when she stopped and excused herself as she had seen something on the monitor," explains Louise.

"It is every parent's worst nightmare. When she came back into the room, she said the doctor would have to look at the scan tomorrow as there were none available that day."

Louise and Peter returned the next day after a worrying night to be told their baby had spina bifida.

"We had a stillborn baby before our first daughter, Amy, was born, and we thought it was happening again with this pregnancy," says Louise. "It was very scary, but once we heard the baby was going to live, we were relieved. We were told the baby would need surgery when she was born, but the medical staff were brilliant and prepared us for everything that was ahead.

"The specialist told us all about spina bifida and warned us not to read about it on the internet as it would scare us and every case is different."

Louise was referred to the Royal Victoria Hospital, where she was to have the baby, who would need an operation soon after she was born, resulting in a transfer to the Hospital for Sick Children.

"I had to be induced at 37 weeks because of Sophie's spina bifida. This meant a medical team could be on standby to take care of Sophie when she was born.

"I was surprised that I would be having a natural birth rather than a caesarean section. I thought a natural delivery would damage Sophie, who had what is like a large cyst on her back, but was assured she would be fine."

Louise suffered some serious medical issues herself during Sophie's birth, with worryingly high levels from her liver function tests and a damaged spleen.

"I don't know what caused the reactions in my body, whether it was to do with Sophie's spina bifida or something to do with me. I didn't take any drugs or pain relief during her birth in case she needed a general anaesthetic soon afterwards, and I wanted to have my wits about me when she came out of surgery.

"When she was born, I held her for less than five minutes before she was taken away to a neonatal unit in the maternity wing of the hospital.

"She was in an incubator when I went down to see her and I took some pictures. At that stage, I wasn't terribly worried as I knew she would be taken away from me for an operation, I knew that it needed to happen.

"She was four hours old when she had back surgery, which essentially repaired the section of her body affected - this involves the sealing of the lesion.

"Sophie now just has a scar to show where the lesion was."

With Sophie in the incubator and being monitored, Louise and Peter were kept up to date by neurosurgeons, who she describes as "absolutely brilliant".

"They visited us five to 10 times a day with updates on Sophie's progress," says Louise.

The first round of surgery on baby Sophie was successful, but 10 days later she developed hydrocephalus, so she needed another operation.

"I felt differently about Sophie going in for surgery again," says Louise. "This was my baby who I had been with constantly for 10 days, who I had bonded with. So the prospect of her having brain surgery was really frightening.

"Her weight went down from six pounds to five pounds - and, as with anyone who needs a general anaesthetic, it's nil by mouth. The only thing I could give her was a dummy dipped in sugared water to try and soothe her."

But Sophie's fighting spirit saw her recover from yet another round of surgery when a shunt was inserted (to facilitate the drainage of excess fluid).

Proud mum Louise says: "She had a little Calpol (liquid paracetamol) after surgery, that was all. Kids are amazing. They just get on with it."

Two weeks after Sophie was born, she was finally able to come home, much to the joy of Louise, Peter and big sister, Amy.

"Sophie needed the same type of care all babies need when we got her home, such as nappy-changing. There were a lot more appointments and visits from nurses, of course," she says.

"When Amy was born I was able to get out and meet people for coffee, but Sophie needed to see a lot of specialists, from neurosurgeons to continence nurses. Thankfully, there have been very few serious issues with the shunt that was inserted and it should last for most of her life."

Louise says other people's reactions to the newborn Sophie were sometimes awkward.

"When there is something wrong with your baby, people don't always know what to say. They sometimes say they are sorry and I know it is out of good intentions, but there was really no need. She is a strong little lady," Louise says.

Sophie also had an indwelling catheter fixed and a bag, which has now been replaced with a catheter, which can be changed daily to reduce the risk of infection. Her condition means that she suffers problems with her bladder, bowel and kidneys.

Despite the difficulties posed by the condition, Louise says Sophie is a blessing: "She is brilliant, a real character, with a great personality. When I first heard she had spina bifida I was unsure whether it affected the child mentally - which it doesn't. There can be issues with short-term memory loss later in life though, and the hydrocephalus does mean there could be potentially a need for brain surgery as well, but generally it is physical."

Sophie can walk independently and is getting ready for the new primary one term in a mainstream school - the same one her sister went to, after a successful year at nursery school, where she flourished.

"I don't see any issues for her now, but this could change later," says Louise. "She is her own person and totally different from Amy, who has always been sensitive, and is now sensitive to her sister's needs. Now, Amy knows that children can be different, and her friends know this, too. They ask me questions all the time, which I love. I would rather someone would ask me about Sophie.

"Sophie didn't walk until she was two and half years old and it was in our living room. My mum and Peter's mum, dad and sister happened to all be there at the time, so it was wonderful that we saw that."

Although she wears a nappy, Sophie is confident to have a go at anything, taking part in her nursery school's recent sports day.

"She can do most things that kids her age can do," she says.

"She can walk on her own, though she cannot walk over long distances at all and is aware of her limitations. She knows what she can and cannot do and is not afraid to ask for help when she needs it.

"When she makes up her mind to do something, she just does it." The bubbly four-year-old has had a full-time classroom assistant to support her needs at nursery and Louise says this should continue into her primary school years.

Louise and Peter admit they have worries about Sophie as she gets older.

Louise says: "Child-minding is harder to find for Sophie because of her specialist needs, and I do worry that she may be teased as she gets older, but we will cross that bridge when we come to it."

Ultimately, the family consider having Sophie in their lives a gift. "Having Sophie puts everything else into perspective.

"She is such a great girl and she has brought so much happiness into our family and made us all closer.

"She has shown us all to look at things in a different way and appreciate all that matters is your health and your family. That is all that is important."

Top gynaecologist backs use of folic acid

Northern Ireland's leading obstetrician and gynaecologist, Professor Jim Dornan, has backed the campaign which is encouraging all women - who can get pregnant - to take folic acid in a bid to prevent the incidence of Neural Tube Defects (NTDs) such as spina bifida.

Professor Dornan, who holds the chair in Foetal Medicine at Queen's University in Belfast and in Health and Life Sciences at the Ulster University, says women need to get the right levels of folic acid into their bodies at a crucial early stage of pregnancy to give their baby the best chance of being born without NTDs.

He says women in Northern Ireland are very good at taking the supplement, but the timing needs to be earlier.

Professor Dornan says: "The neural tube - spinal cord - closes down three weeks after conception, which is why it is important to have enough folic acid in the body at this point.

"Folic acid is required for building DNA and these building blocks need to be in place before the third week of pregnancy."

He adds that 35% of women in the province take folic acid, but only 15% take it before the key time.

"If you could get pregnant, trying or are thinking about it, you need to be taking folic acid," he says.

And the supplement is the best way to achieve this, according to Professor Dornan.

He adds: "A folic acid supplement is simple to take as there is not enough of the nutrient in broccoli - even if you lived on it.

"The message is this - women need to take folic acid within days of getting pregnant, so the best way to do this is to start taking it before you know."

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