Hesperian Health Guides

Caring for the Child with Spina Bifida

child with bag of nerves on the spine
child without bag of nerves on the spine

Care of the defect. 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 defect 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. DVC Ch22 Page 169-3.png
DVC Ch22 Page 169-4.png
child with brain to heart shunt
one-way valve
flexible tube (shunt)
child with brain to belly shunt
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 normal (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 damage. 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 become mentally slow. Others are intelligent, however, and develop normally. 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, despite his limitations?
  • 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:21 Nov 2019