It’s the disease that most people have a vague notion of without, perhaps, fully understanding what exactly it entails.
Spina bifida: a relatively common condition which affects about one in every 1,000 children born in Ireland – one of the highest rates in the world.
And one woman who is acutely familiar with it is Co. Antrim-native Louise Boyd. She is the mother of seven-year-old Amy, and Sophie, four.
Sophie suffers from spina bifida, as well as hydrocephalus – which results in excessive fluid in the brain – and Arnold Chiari malformation; a defect in her cerebellum, the part of your brain that controls balance.
Her family knew in advance that she’d be born with health problems – because her spina bifida was discovered during Louise’s pregnancy, around the half-way point. Sophie had her first operation, the first of many she would endure, when she was just four hours old.
Louise explains: “Although Sophie can walk, she has issues with mobility and balancing, falls over quite a lot and has difficulty managing uneven ground, kerbs and steps and cannot walk for long distances.”
Sophie also needs to use nappies and a catheter for bladder and bowel problems, although she now only sees a specialist once a year for a check-up.
Louise, who didn't take folic acid initially but started taking it as soon as she found out she was pregnant, describes Sophie as a “lively, chatty little girl who is very sociable and loves dressing up and clothes and playing with her cousins and friends”.
The mother-of-two also admits that she had no real idea what spina bifida would mean for her family, adding that she was “shocked” when they were given the diagnosis.
She remains upbeat, however. “All in all I would say having a child with spina bifida has had a positive impact to our family – although it is difficult when your child cannot do the things other children can do, it has brought us a more positive perspective on life and what is important.
“Health and family are the most important things anything else is a bonus.”
Describing them as “an invaluable support,” Louise advises anyone who has had a spina bifida diagnosis to get in contact with SHINE (especially for those in Northern Ireland) or Spina Bifida Hydrocaphalus Ireland as soon as they feel ready. “Also try to contact other families who can share experiences and more often than not, alleviate your worries,” she adds.
Any woman planning a family, who is sexually active or of childbearing age needs to take the recommended dose of folic acid daily in order to reduce the risk of neural tube defects.
However, Louise adds: “If you do have a spina bifida diagnosis of your baby – don't panic, it is a long and winding road but a very rewarding one.”
At safefood, they don’t usually tell people to take supplements.That’s because if you eat healthy, you can generally get all the nutrients you need from food. There is one exception though – that’s folic acid for women who are sexually active and could become pregnant, even if you’re not planning to have a baby any time soon.
So make sure you take folic acid for three months before you become pregnancy and for the first three months of your pregnancy to help your baby’s spine and brain develop properly.
You can check out the facts here.