Caring for the Child with Spina Bifida

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HealthWiki > Disabled Village Children > Chapter 22: Spina Bifida > Caring for the Child with Spina Bifida

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In this chapter:

 

In this chapter:

BEFORE SURGERY	AFTER SURGERY

Care of the condition. When there is a “bag of nerves”on the spine of a newborn baby, his chances of living are much better if he has an operation within a few weeks. The surgery covers the bag with muscle and skin. Without this operation there is a high risk of injury and brain infection (meningitis); the child will probably not live very long.

For children who cannot get an operation, try to protect the bag of nerves so that its thin covering is not injured or broken. (If it breaks, meningitis can occur.)

One way to protect the bag is to make a ring or “donut” of soft cloth or foam rubber, and to tie it so that it surrounds the bag. Do not let the ring or clothing touch the bag.

SHUNT – BRAIN TO HEART	SHUNT – BRAIN TO BELLY
one-way valve flexible tube (shunt)	valve flexible tube (shunt) curled end, which unwinds as the child grows

Hydrocephalus. It is important to measure the distance around the head of the child at birth, and every week or so afterward. If head size increases faster than is typical (see chart of average head size), or if you notice that the head is swelling a lot, the child the child probably has hydrocephalus.

A surgical operation called a “shunt” may need to be done before the pressure of the liquid in the brain causes much injury. A tube is run from a liquid-filled hollow in the brain into the entrance to the heart or into the belly (abdominal cavity). This way the extra liquid is drained from the brain.

Not all children who have early signs of hydrocephalus need this operation. If the head is not very swollen and stops increasing rapidly in size, it may get better by itself.

CAUTION! Shunts do not always give good results. Even with surgery, 1 out of 5 children with hydrocephalus dies before age 7 and more than half develop cognitive delay. Others do not. Before deciding on the operation, get advice from 2 or 3 specialists.

Note: We realize that, for many families, the operations described here will not be possible. Except where free hospital services are available, they are very costly.

Before deciding on surgery, there are several things to consider:

• What will the child’s future be like, if he lives? Is he likely to suffer greatly, or might he have a chance to live a full and happy life?
• If the family spends much money on operations, and then on daily care of the child, how will this affect the health and well-being of the other children in the family?

In short, before deciding whether to operate, it is important to consider carefully how this may affect the quality of life for both the child and the family.

This page was updated:18 Sep 2024