CHECK-UP:My friend's new baby has been diagnosed with spina bifida. Can you tell me how this condition is likely to affect him?
Spina bifida is known as a neural tube defect. It can occur if the foetal spinal column doesn’t close completely during the first month of pregnancy, resulting in problems with the spinal cord or its coverings. Although for some sufferers the effects can be mild or repairable through surgery, for other there can be nerve damage that causes varying degrees of paralysis in the lower limbs.
A child with spina bifida may need assistive devices such as braces, walking aids or a wheelchair. Some may experience learning difficulties, urinary and bowel problems or even a build up of fluid in the brain (hydrocephalus).
The incidence of spina bifida and/or hydrocephalus in Ireland is the second highest in the world. On average, 75 babies are born each year with spina bifida and approximately 80 per cent of those have some degree of hydrocephalus.
Women are now routinely advised to take folic acid before conception and during pregnancy as it has been shown to prevent up to 70 per cent of first-time neural tube defects.
Can anything be done to treat it?
While there is no cure for the condition, treatments focus on the complications. The goal of interventions is to create a lifestyle for the child and family in which the disability interferes as little as possible with normal everyday activities. A wide range of medical and surgical professionals can contribute to the ongoing care and treatment of a child or adult with spina bifida. Specialist nurses, physiotherapists, occupational therapists and social workers can also provide interventions, treatments and support.
Is there a support group I could put her in touch with?
Spina Bifida Hydrocephalus Ireland (SBHI) works with people with spina bifida and hydrocephalus to improve the quality of their lives on a practical level. They can be contacted on 01-4572329 or by logging on to sbhi.ie.
SBHI is hosting the Annual World Congress for Spina Bifida and Hydrocephalus this weekend at the City West Hotel, Dublin. Topics will cover new treatment options and intervention techniques as well as workshops for people with spina bifida and/or hydrocephalous.
Volunteers will be available to take care and run activities for children while their parents attend the congress.
