What is it like for siblings if their brother or sister has spina bifida?

Lots of siblings get on really well with their brothers and sisters who have spina bifida. They have fun together and enjoy playing together. However, it can be worrying for siblings if their brothers and sisters with spina bifida have to have operations and go into hospital. They also miss their parent if they have to go with their brothers and sisters into hospital and this can make them feel sad.

What causes spina bifida?

The backbone is made up from 33 bones called vertebrae. They have a tube down the middle which contains the spinal cord, a bundle of nerves going from the brain to control the rest of the body. If someone has spina bifida, some of the vertebrae have not grown into a complete circle so the spinal cord can stick out and get damaged. Nobody knows what causes it, but doctors are trying to find out. One thing they have found is that a woman who does not have enough folic acid in her diet is more likely to have a baby with spina bifida. Folic acid is a vitamin which is found in some food, like oranges, broccoli, spinach and egg yolks.

What does it mean?

Nerves branch out from the spinal cord in different places to get to the part of the body they control. So the nerves for arms come out near the top, the ones for legs come out fairly near the bottom and the ones for feet even nearer the bottom. In spina bifida only the nerves which come out below the damaged part of the spinal cord are affected.

When a part of someone’s body is affected by spina bifida it is affected in two ways – the muscles don’t work as well as they should (or not at all), and the person doesn’t have a sense of feeling in that part of the body  (for example, not feeling a cut or burn on the leg). Nearly everyone with spina bifida has problems going to the toilet. Most people have trouble with their feet and ankles. A lot of people’s walking is affected. A few people have their arms affected. Most people with spina bifida also have hydrocephalus. People with spina bifida may find it hard to concentrate, plan and organise things. They may also find to hard to do maths or problem solving.

What treatment is there?

People who have spina bifida may need:

• operations to close the gap in their backbone
• a shunt, which is a set of tubes used to drain the fluid from around the brain
• help and exercises to make the best use of their muscles
• braces to help them walk, or use a wheelchair.

They have to be specially carefully not to hurt the bits of the body which don’t have any feeling nerves.