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.