Hesperian Health Guides

Chapter 22: Spina Bifida

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HealthWiki > Disabled Village Children > Chapter 22: Spina Bifida


WHAT IS IT?
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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.
a child with spina bifida
High risk
Hips
Urine and bowel control
  • 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.
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  • 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.
  • Big head. ‘Hydrocephalus’, which means ‘water on the brain’, develops in 4 out of 5 children with spina bifida. The liquid that forms inside the head cannot drain normally into the spinal cord, so it collects and puts pressure on the brain and skull bones. Although the child’s head may look normal at birth, little by little it becomes swollen with liquid, like this.
a child with hydrocephalus
very big head
big veins
The eyes may turn downward because of pressure in the head. This ‘setting sun sign’ means danger of blindness and severe brain damage.
  • Brain damage. Without early surgery to lower the pressure of the liquid in the head (and sometimes even if the surgery is done), some children become blind, mentally slow, have seizures, or develop cerebral palsy.

PROBLEMS THAT MAY OCCUR WHEN THE CHILD IS OLDER:


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  • Pressure sores may form over the bones, because the child cannot feel.
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  • Foot injuries. Children who can walk but have no feeling in their feet may easily develop sores or injuries. If neglected, these can lead to severe infections of the flesh, bone infection, and deformities or loss of the feet.


What is the future for a child with spina bifida?

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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
OF DISABILITY
parts of the backbone and how much paralysis the child will have
7
neck bones (cervical vertebrae)
12
back bones (thoracic vertebrae)
5
waist bones (limbar vertebrae)
5
joined bones
at the seat (sacrum)
  • probably will not walk
  • cannot control urine or stools
  • may walk using aids when small
  • later may need wheelchair
  • cannot control urine
  • may walk with little or no help
  • may be able to control both urine and stools (peeing and shitting)


This page was updated:19 Jan 2018