CARING FOR A CHILD
Once a child is diagnosed, parents suddenly realize that they have multiple needs to address. An affected child may require immediate drug treatment or surgical procedures that require hospitalization. The disease may stabilize or improve in some children requiring few lifestyle changes. However, with other children the disease may progress to an advanced stage of heart failure dictating greater lifestyle restrictions and specialized care.
The challenges that may arise from a diagnosis include dealing with the psychological issues of living with the disease and adjusting certain daily routines such as the amount of activity, diet and the frequency of medical supervision. Besides these more immediate changes, there may be other issues, as a child gets older. This may include handling school and social situations, managing ongoing medical care, obtaining health insurance, and possibly accessing special child services.