There are now more adults living with congenital heart defects (CHD) in the United States than there are children, and this figure is estimated to grow by at least 20,000 yearly. Although there have been major advancements in the medical and surgical care of those born with CHD in the past 50-60 years, adults with congenital heart defects still need lifelong care. Since many people with CHD were told that they were "fixed," "cured," had "normal" hearts, or did not need to be followed anymore, many of more than one million adults living with CHD are not receiving or even seeking appropriate care. You might be one of them. You might be one of the "lost." If so, it is important that you get back into appropriate care.

The American College of Cardiology (ACC) lists defects as simple, moderate, or complex and makes recommendations regarding the level of care in each group.

• If your defect is classified as simple, you can probably be cared for in the local medical community by an internist, general practitioner, or general cardiologist. The ACC, however, recommends that you be evaluated by an adult congenital heart defect (ACHD) specialist at least once.
• Local physicians taking care of patients with moderate to complex CHD must work together with ACHD specialists. Those with moderate defects should periodically be seen at a regional ACHD center; while those with complex disease should be seen regularly at an ACHD center.
• More information about choosing an ACHD specialist is available by clicking here. A searchable database of ACHD specialists is available at no cost to ACHA members.

If you are reading this page, you are no longer lost. You are one of the lucky ones. Now it is your turn to prevent others from becoming "lost." Here's how:

• Join ACHA;
• Become an advocate for yourself and others;
• Educate your local doctors about the specialized care ACHD patients deserve;
• Participate in lobbying efforts to get funds for CHD research;
• Attend local, regional, and national ACHA events and conferences;
• Support the development of a national CHD registry;
• Tell everyone you know and even those you don't know about ACHD!