Many families are looking for information about CHD in general or about their child’s specific defect(s). MLH members find that www.pted.org has easy-to-use information and diagrams of several different heart defects. It has descriptions, diagrams and definitions to help users understand CHD. There is information in Spanish as well.
There is also helpful information on the American Heart Association website. At the bottom of the page, you will see that AHA has a web booklet called, “If Your Child Has a Congenital Heart Defect.” MLH members helped with the editing of that booklet so that it is easy for parents and caregivers to use. The booklet has descriptions, diagrams, and general information about the heart and some procedures. AHA also has a web booklet on adults with congenital heart defects that you may find helpful. Learn more about CHD, by reading AHA’s 2011 Statistical Fact Sheet, as well as Small Hearts – Big Challenges: Congenital Heart Defects in Children and Youth.
The Centers for Disease Control and Prevention also has information about CHD on their site. There is some information about CHD in general and some specific defects. There is also information about CHD screening, data and research on this site.
Finally, many of our wonderful children’s hospitals have websites full of good information about CHD. Those websites can be an excellent resource for families. MLH members suggest looking at the website of your local children’s hospital (if they do pediatric cardiac procedures) to get more information about CHD and resources in your area.