Many of these children have unusual hearts which have been reconstructed and do not resemble a normal heart at all. Somehow surgeons can go into the heart and force blood to flow into man-made vessels so that the body is still nourished, even if it is not done in a typical manner. The risk of complications is great and the future of these reconstructed hearts is only now being discovered as many of these children reach adulthood. Pediatric cardiology is still a relatively new field. Unlike adults with acquired heart disease, there are few doctors available to help the child born with a congenital heart defect.
Some cardiologists have little to no experience dealing with congenital heart defects.
There is almost no support for the adult with a congenital heart defect. In fact, most adults with congenital heart defects do not even know another person born with a heart defect. There is a growing number of ACHD'ers, however, who are meeting because of the wonders of the Internet. At places like the Congenital Heart Disease Information and Resource website, teens and adults can meet in the teen lounge, or join a listserv especially for them. There are bulletin boards on the Internet with posts from adults with congenital heart defects.