Adult Congenital Heart Disease


You may be one of the growing number of adults born with congenital heart disease (CHD), which refers to a birth defect of the heart. It happens when something in the heart or the connecting blood vessels doesn’t form properly as the fetus grows and develops during pregnancy.

If you’re born with CHD, growing up doesn’t simply mean that you “outgrow” the disease. Due to continuing improvements in early diagnosis during pregnancy, surgical techniques, and medical treatments, more adults live with CHD than children.

  • In 2010, approximately 2.4 million individuals were estimated to be living with CHD in the U.S.—1.4 million of whom were adults.1
  • CHD affects nearly 1% of―or about 40,000―births per year in the U.S.2
  • About 95% of babies born with noncritical CHD and 69% born with critical CHD are expected to survive to 18 years of age.2
  • About 4 in every 10 adults with CHD have a disability, with cognitive disabilities (trouble concentrating, remembering, or making decisions) being the most common type.2
  • Compared to the general population, adults with CHD have three to four times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays.1
  • Less than 10% of adults with CHD in the U.S. who need care from specialty adult CHD centers are receiving the recommended care.2

While the transition from being a child to an adult with CHD can be complicated, most adults with CHD now have better odds of living normal lives than ever before. However, it is essential to continue effective and comprehensive heart care throughout life, as most adults with CHD will need specialized adult CHD care.