spina; bifida; spine; disability;
What is Spina Bifida?
Spina bifida (say spy-na-bif-id-a) means split spine.
The spine doesn't just help you to stand up. The spine also contains the spinal cord which is a bundle of nerves that carry messages to and from the brain to the body.
If some of the bones in the spine don't grow together properly in the very early weeks of a pregnancy there is a split in the spine and the cord can bulge out and some of the nerves become damaged.
Then the messages to and from the brain cannot get through. If messages can't get through some of the muscles won't be able to work and there will be no feeling in the part of the body that isn't getting messages.
What causes Spina Bifida
What causes Spina Bifida is not known for certain, but it is thought to be partly genetic. Sometimes someone else in the family may have also had spina bifida, but usually no-one has had it.
The changes in the genes seem to happen 'by chance' when the mother's genes and the father's genes got together at the very beginning of a pregnancy. Even then, not all babies who have the gene change will develop spina bifida.
If a mother has extra folic acid in her diet - or is getting some by taking tablets – then, even if the baby has that gene change, it is not so likely to develop spina bifida.
Effects of Spina Bifida
The effects depend on how much damage is done to the nerves.
Spina Bifida - Occulta (say ok-ul-ta) is when there is a tiny gap in the spine and the spinal cord has not been damaged. This gap in the bone is covered by skin and muscles so it may not be seen. There may never be any problems with the spine and the person may never know.
Meningocele (say men-in-goh-seel) is when there is a bigger gap in the spine and the meninges (the covering of the spinal nerves) bulges out.
The nerves are still inside the spine and are not damaged. The person can have an operation to make sure they stay safe. There are not usually any problems after that.
Myelo meningocele (say my-el-oh-men-in-goh-seel) is when the spinal cord and the meninges are sticking out through the gap in the spine. They are covered by a thin layer of skin.
||The spinal cord has not developed normally and some nerves will be damaged.|
||This means that the person will be paralysed in the lower parts of the body.|
||The lower the split in the spine the fewer nerves are affected and the less paralysis will occur.|
||Some kids will be able to walk with the help of crutches or braces.|
||Other kids may need a wheelchair to get around and some have bowel or bladder problems. They cannot feel when they need to go to the toilet/loo/lavatory/dunny (or whatever you call it where you live).|
||Some kids with spina bifida may have learning problems but many are just regular kids who have problems getting around.|
Some kids with spina bifida may also have hydrocephalus (say hi-dro-cef-a-luss).
||Hydro means water, and this condition is when there is too much fluid around the brain. |
||Doctors put in a shunt, which is a drain that gets the extra fluid away from the brain.|
||Sometimes the shunt gets blocked and this means that the person may have to have several operations over time to keep unblocking it.|
Kids with spina bifida are not always the same.
||Some kids can have the same sort of lives as everyone else.
||Some kids spend a lot of time in hospital.|
||Some kids go to school with everyone else while others will need a lot of care and stay at home.|
||Some kids take up wheelchair sports and become really skilful at them. |
How you can help
If you have someone in your family or class who has spina bifida then you can help by.
- being kind and thoughtful
- talking and being friendly
- keeping an eye on her in the playground but only if she needs your help
- recognising that she is a normal person with normal feelings who happens to have a disability
- playing with her
- if she feels ok about it, having a go in a wheelchair, it's not as easy as it looks!
- maybe joining a wheelchair team like basketball, where there is a mix of disabled and able bodied players. (Lots of fun but everyone plays hard!)
- remembering that everyone is the same on the inside. We all need friends.
Dr Kim says
There are many different kinds of doctors and other health professionals who help to keep someone with spina bifida as healthy as possible.
Everyone else can help too. Remember that no-one chooses to be born with a disability.
If you are interested in learning more about spina bifida then look at this website http://www.spinabifida.asn.au/
We've provided this information to help you to understand important things about staying healthy and happy. However, if you feel sick or unhappy, it is important to tell your mum or dad, a teacher or another grown-up.