Transitioning - why is it so difficult?

More children with congenital heart disease are living to adulthood. The result of this is a large rise in the adult congenital heart disease (ACHD) population. Pediatric cardiologists are trained in congenital heart disease, therefore understand the anatomy and special needs of children born with heart defects. Adult cardiologists receive little or no training in congenital heart disease, therefore often do not understand the anatomy and concerns of adults born with heart defects. As patients with congenital heart disease become adults, they may develop new problems and should continue to be followed by a congenital heart specialist to keep their heart healthy. Across the United States, less than 10% of ACHD patients are receiving the recommended cardiac care. There are many reasons for this, including:

• In some hospitals, pediatric cardiologists are not allowed to care for patients over the age of 18
• Patients do not continue with follow-up care
• Lack of education about their heart defect
• Belief they are “fixed” or “cured”
• No longer “want to deal with heart disease”
• A perceived lack of cardiac symptoms
• Transportation issues
• Insurance barriers
• Financial issues
• Relocation
• Unsure how to find a new congenital heart specialist

Here is a website designed for young people to use to help make the transition.
 https://iheartchange.org/welcome.aspx?ReturnUrl=%2f