Louise Boyd

Louise Boyd is a Mum of two from Co. Antrim. Her children are Sophie (4) and Amy (7). Sophie was born with spina bifida and hydrocephalus. Sophie can walk independently, but is very unstable on her feet. She needs to use nappies and catheter for bladder and bowel problems. The family found out that Sophie had spina bifida at the 20 week scan and had to have her first operation when only four hours old. She has had numerous operations and visits to the hospital at the early stages, but now only needs to attend once a year for check-ups. Louise didn't take folic acid initially, but started taking it as soon as she found out she was pregnant. In this interview Louise tells us more about living with spina bifida...

family photo

Q: How would you describe Sophie?

Sophie is a very lively, chatty little girl who is very sociable and loves dressing up and clothes and playing with her cousins and friends. She is very close with her big sister and they love to play together out in the garden or playing with dolls.

She is extremely determined and knows exactly what she want and isn't afraid to tell you! She is a very loving little girl and loves company and really loves a laugh.

Q: Would you mind telling us a little bit about Sophie's condition and how it has affected her?

Sophie has spina bifida, hydrocephalus and Arnold Chairi malformation. 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. She is also unable to climb, hop, skip and just only recently been able to manage jumping.

She has a shunt in her brain to drain the CSF (cerebrospinal fluid) into her abdomen as this is a job the spinal cord would normally do, but cannot with Sophie. We have to be on the look out for shunt blockages as this can have a devastating effect.

Sophie attends mainstream school and in going into P1 in September after having a really enjoyable nursery year.

Q: How did you feel when you first found out Sophie had the condition?

We first found out at the 20 week scan and although we had heard of spina bifida, we didn't know what exactly that would mean for our child and our family. We were shocked I suppose, but after a complication with my first pregnancy, we were only glad it wasn't life threatening.

Q: How has spina bifida affected your family in general?

mum and daughter on swingAll 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. We have met some extraordinary people through our journey so far, from other families to health professionals to charity workers - a real confirmation of the human spirit. Our elder daughter Amy has also a very compassionate nature and is aware that people are not all the same and may have issues to contend with, some of which are not visible.

Q: Would you have any advice for other women based on your own experience?

I would advise anyone who has had a spina bifida diagnosis to get in contact with SHINE as soon as they feel ready - they have been an invaluable support to us. Also try to contact other families who can share experiences and more often than not, alleviate your worries.

For any women planning a family, or even if sexually active and at childbearing age, ensure you take the recommended dose of folic acid daily, from at least 3 months prior to becoming pregnant -  or daily if not planning a pregnancy - in order to reduce the risk of neural tube defects.

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.

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Shine is a community of individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, and/or spina bifida, and related issues.