Carolinas HealthCare System

A New Subspecialty Within Cardiology is Emerging: Care for Patients with Adult Congenital Heart Disease

ACHD Patient Videos
See how the physicians at Sanger Heart & Vascular Institute, part of Carolinas HealthCare System, performed an advanced valve replacement procedure to help Christopher Carlson overcome a congenital heart ailment. (3:27)

Because of significant advances in diagnosis and treatment, the number of adults living with congenital heart disease (ACHD) is now greater than the number of babies born with congenital heart disease (CHD). Many of these patients, who previously did not live past childhood or adolescence, are now living well into adulthood.

And, studies are showing that people who have adult congenital heart disease benefit greatly from highly specialized care. Studies show that they, in fact, are living longer than those who do not receive specialized care. They are planning for life: college, career, pregnancy and the road to adulthood and older age.

The team at Sanger Heart & Vascular Institute, based in Charlotte, NC, has the expertise to address what's important to ACHD patients as they grow, including:

  • Expectations for long-term outcomes
  • Life changes, such as pregnancy
  • Considerations for the successful transition from pediatric care to adult care
  • Lifestyle management, including healthy eating guidance and exercise options

Get the Facts on Congenital Heart Disease

What is adult congenital heart disease?

  • Congenital heart disease (CHD) refers to a heart defect that develops before birth. Many times, a congenital heart condition is detected during maternal prenatal testing or in early childhood, but not always.
  • Years ago, most people with severe types of congenital heart diseases did not live beyond childhood or adolescence. Due to tremendous advances in heart care, many more of these patients are now living well into adulthood.
  • This relatively new population of adult congenital heart disease (ACHD) patients have unique needs that require highly specialized care.

If I'm already seeing a cardiologist, why do I need additional specialized care?

  • Research shows that adults with congenital heart disease who receive care in a center that specializes in the unique challenges of ACHD live longer than those who don't. Yet, it's estimated that less than 10 percent of all ACHD patients receive this specialized care in the United States.

Why should I choose Sanger Heart & Vascular Institute for care or a consultation?

  • Jorge Alegría, MD, is one of a few specially trained ACHD cardiologists in the region. He leads a team of cardiologists, surgeons, imaging specialists and nurses who understand the specific challenges you face.
  • If you have a cardiologist, Dr. Alegría works hand in hand with your referring cardiologist or primary care physician to develop your treatment plan.

How do I know if I have congenital heart disease?

A defective heart may be diagnosed before birth, right after birth or during childhood. The vast majority of cases are identified before adolescence. It's possible to have a defect and no symptoms at all. In adults, symptoms of congenital heart disease may include:

  • Shortness of breath
  • Becoming tired very quickly when exercising
  • Dizziness or fainting
  • A bluish tint to the skin
  • Abnormal heart rhythms
  • Swelling of body tissue or organs, also called edema
  • Stroke

If you had heart surgery as a child but are now suffering from any symptoms noted here, make an appointment with your primary care doctor immediately or find a Carolinas HealthCare System physician.