Why does it happen, how will it affect your child and what treatments are there – information from the Association of Spina Bifida and Hydrocephalus

It is frightening to be told that your child has spina bifida, especially if you don’t know much about the condition. It does not mean your child can’t enjoy the everyday things of life. As one young woman with the disability recalls, ‘When I was a baby, people said I wouldn’t be able to do anything. Twenty-four years later, I have 10 GCSEs, one husband, one baby and another one on the way.’

What is spina bifida? Spina bifida means ‘split spine’. The backbone usually provides a protective boney tube with the nerves (spinal cord) running down the middle. In spina bifida, the bones do not close round the spinal cord and the nerves can bulge out on the unborn baby’s back and become damaged. This happens very early on in pregnancy, often before a woman knows she is pregnant.

Like all babies and children, those with spina bifida are individuals and the effects of the disability will vary. Many children with the severe type of spina bifida (myelomeningocele) will also have hydrocephalus (excess fluid in the head). There is also a mild form (spina bifida occulta).

Will my child be able to walk? In severe forms of spina bifida, there will be some paralysis below the level of the fault in the spine. Your child will be able to get around but may need walking aids to help them and some children find they get around best using a wheelchair.

What other effects will there be? Bowel and bladder control can be affected by damage to the nerves. But modern techniques mean continence can be well managed.

What treatment will my child need? Again, this will vary from one child to another but many babies with severe spina bifida will have an operation on their back. This is usually done within the first few days after birth. If your child has hydrocephalus, an operation may also be needed to drain off the excess fluid and control the hydrocephalus. Some children may need operations to correct problems with feet and ankles and, later on, any curvature of the spine.

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