It can be frightening to be told that your child/baby has spina bifida, especially if you have not heard about it before or know very little about it.
This page will try to answer some of the questions parents ask and tell you how to find out more.
Most importantly, your child needs the same love and attention as any other child but try not to wrap him or her in cotton wool - children need to be allowed to make mistakes and find out for themselves.
Having spina bifida 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 'She won't be able to do anything'. Twenty-four years later, I have 10 GCSEs, have had two houses, one husband, one baby and another one on the way."
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 the woman even 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), see our parents' page on hydrocephalus for more information. There is also a mild form (spina bifida occulta).
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 by using a wheelchair.
Bowel and bladder control can be affected by damage to the nerves. But modern techniques mean continence can be well managed and this is important, not only for social reasons but to keep kidneys healthy.
Again, this will vary from one child to another but many babies with severe spina bifida will have an operation on their back. If so, 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.
We do not know the exact cause of spina bifida but it is thought to be a combination of factors, and research continues.
One of the factors involved in spina bifida does seem to be genetic (hereditary) and, if you have had a pregnancy affected by spina bifida, you are more at risk of it happening again. You are also at greater risk if you have a family history of spina bifida.
You can greatly reduce the risk of it happening in another pregnancy by taking a daily dose of 5mg folic acid - for at least a month before you get pregnant and for the first three months of pregnancy. You would need a prescription from your doctor for this.
Most children with spina bifida and hydrocephalus are educated in mainstream education with their brothers and sisters - sometimes with extra help. If they need additional support, ASBAH can help you to get this.
More and more young people with spina bifida are growing up and having families of their own.
With good medical management and prevention of secondary conditions (such as kidney problems) the prospects are good - at the last count, ASBAH's oldest member with spina bifida was 80+.
Some children with spina bifida may take longer than average to achieve a sitting balance. Make sure your baby is well-supported so that their hands are free to play. Help your baby to be aware of his/her body, especially those parts which may not have so much feeling. Talk to your baby about what youղe doing, eg nappy changing. Ask your health visitor what help is available in your area, such as a portage scheme (a pre-school home advisory service).
ASBAH can help with information and advice on:
ASBAH provides:
Information sheets and booklets available from ASBAH include:
A list of all our information leaflets and publications is available from our Information Department, ASBAH House, 42 Park Road, Peterborough PE1 2UQ, tel: 01733 555988
When you contact ASBAH, you can be sure of a friendly reception coupled with experience and professionalism. You may just want to have written information, or a confidential chat on the phone, or further support through one of our area advisers. Whether you want to contact us occasionally or need more involvement with the Association, we are here to help.
