Hesperian Health Guides
Chapter 22: Spina Bifida
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Spina bifida (also called meningocele or myelomeningocele) is a defect that comes from a problem in the very early development of the unborn child. It happens when some of the back bones (vertebrae) do not close over the center tube of nerves (spinal cord). As a result, a soft unprotected area is left, which may bulge through the skin as a dark bag. This ‘bag of nerves’ is covered by a very thin layer (membrane) which may leak liquid from the spinal cord and brain. Nobody knows what causes it. But 1 of every 250 to 500 babies is born with spina bifida.
Problems that occur with spina bifida
- High risk. Without early surgery to cover the bag of nerves, it almost always gets infected and the child dies of meningitis.
- Muscle weakness and loss of feeling. The legs or feet may be paralyzed and have little or no feeling.
- Hips. One or both hips may be dislocated.
- The feet may turn down and in (club feet), or up and out.
- If the defect is relatively high up the back (L1 or above, see next page), there may be muscle spasms (spasticity) in the legs and feet
- Poor urine and bowel control. The child may not feel when he pees or has a stool. When he gets older he may not develop control, and will pee or shit without knowing it.
very big head
The eyes may turn downward because of pressure in the head. This ‘setting sun sign’ means danger of blindness and severe brain damage.
PROBLEMS THAT MAY OCCUR WHEN THE CHILD IS OLDER:
What is the future for a child with spina bifida?
This will depend first on how serious the defect is, next on medical treatment and general care, and finally on special training and on family and community support.
The higher up the back the defect is or the more severely the spinal cord is affected, the worse the paralysis and other problems are likely to be. If the head is already very swollen, the child’s chances are poor. The costs will usually be great, even for a rich family. Surgery to drain the liquid from the head is sometimes followed by infection. The operation may need to be repeated several times. In spite of the best medical attention, at least 1 of every 4 or 5 children born with severe spina bifida dies in the first months or years of life.
However, the child with a defect that is low down on the back usually has less paralysis, and has a good chance of living a full and happy life. With good family and community support, many children with spina bifida go to school, learn to do many kinds of work, get married, and have children.
Often these children are late in learning basic skills for self-care (getting dressed, eating, going to the bathroom). This is partly because of the disability. But it is also because their parents often overprotect them and do everything for them. It is important for parents to help these children to do more for themselves.
What are the chances that my child with spina bifida will walk?
This depends on many factors. However, the higher up the defect is on the spine, the more paralysis the child will probably have. The drawings below show how likely it is for the child to walk, based on the level of the defect. The shaded areas show the parts of the body affected by paralysis and loss of feeling.
|BONES OF THE ‘BACKBONE’ (SPINE)||LEVEL OF DEFECT||PROBABLE AMOUNT|
neck bones (cervical vertebrae)
back bones (thoracic vertebrae)
waist bones (limbar vertebrae)
at the seat (sacrum)