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Since pediatric cardiomyopathy
is a highly variable disease with a multitude of causes,
the disease's severity and outcome may be different
for each child. Therefore, the type of care required
may vary considerably, even for children from the same
family.
This information is not intended to replace the advice given to you by your
doctor, nurse or nutritionist. Instead, it is meant to assist families by providing
a broad overview and presenting different options for consideration.
A family can face enormous medical,
emotional and financial issues when their child is diagnosed
with pediatric cardiomyopathy. Because it is a rare and
chronic disease, parents typically encounter a series of
dilemmas and choices when caring for their child at home
or at the hospital. Parents need to deal with new challenges
such as feeding, giving medicines, watching for signs of
trouble and all the distinct emotional and administrative
issues associated with a serious disease. This section
is meant to provide families with practical information
on living with cardiomyopathy, coping with possible disease
progression and sadly, in some cases, dealing with the
casualties from this devastating disease.
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