Physicians, nurses, social workers, counselors, child life specialists and other healthcare team members can provide guidance and recommendations for managing the many emotions that may accompany a chronic disease. They may also recommend community services and local support groups.
Local support groups are made up of children with congenital heart disease and their families. Ask about meetings, outings, and parties for children and their families. It often helps to talk to others in your situation, and for your child to experience activities with others that are like him / her.
Your child's cardiologist (or the staff at the hospital) can give you more information about a group in your area. Be sure to also ask about special camps that have been created for children with congenital heart disease to help them interact with each other and have fun.
Many of the volunteer counselors at these camps are nurses, physicians, respiratory therapists, and other medical professionals who love having fun with the children in a camp setting, but who are also able to give medications and help with special needs of children with congenital heart disease.