SPINA BIFIDA
CARING FOR THE CHILD WITH SPINA BIFIDA
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.)
BEFORE SURGERY
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.
AFTER SURGERY
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 on p. 41), or if you
notice that the head is swelling a lot, 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.
SHUNT–
BRAIN TO HEART
one-way
valve
flexible
tube
(shunt)
child the
SHUNT–
BRAIN TO BELLY
valve
flexible
tube
(shunt)
curled end,
which
unwinds as
the child
grows
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.
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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.
disabled village children