The future of care for adults with congenital heart disease

Posted by Cheryl Cranick on Feb 26, 2017 9:33:00 AM

It may seem like a curious idea for adult patients to be seen by pediatric physicians, but this is relatively common for individuals living with congenital heart disease (CHD). As recently as just a few decades, the prognosis was poor for patients born with heart defects, and often they did not survive beyond childhood. However, thanks to medical advances, CHD patients are living longer and fuller lives, and cardiac training is evolving to meet the needs of these adult patients.


Heart disease is divided into two categories:


Physician training to treat cardiac patients has always been divided as well.

  • Pediatric cardiologists are specialists who focus on caring for patients with malformations of the heart from birth, as well as cases of heart complications acquired in childhood.
  • Adult cardiologists are trained in caring for heart disease that develops in adulthood.


Living longer

Although survival rates have increased, strong tracking data for adults living with CHD remains incomplete. The Centers for Disease Control and Prevention cites statics from 2010 estimating roughly 1 million children and 1.4 million adults live with heart defects developed before birth. These numbers illustrate the demand for targeted medical training to meet the distinct changes and challenges adult patients face, including patients taking an active role in their own care versus relying on their parents, complications that may arise from the body and heart growing older, and even women who decide to become pregnant.

The population of individuals with CHD is aging, yet the number of adult congenital cardiology providers remains relatively new. This is a “problem” physicians are thrilled to have because it means their patients are thriving. In response, the American College of Cardiology has established a plan to increase fellowship opportunities in adult congenital heart care to provide practical, hands-on education. The American Board of Internal Medicine has also developed a program for Adult Congenital Heart Disease Certification.                                   

Pediatric cardiologists currently remain leading providers in adult congenital cardiac care; however, as training availability expands, physicians will have the choice to add the subspecialty or remain focused on heart defects during childhood years alone. Patients will also have greater access to medical experts with advanced understanding of their unique health care needs.


Cause and care

The cause of congenital heart disease is still unknown, though in some cases it may be inherited. Patients often show signs of the condition in infancy — and are frequently diagnosed in the womb; some patients might not exhibit symptoms until adulthood. These symptoms can include poor blood circulation that discolors the skin, fatigue and rapid breathing.

One of the most important steps in successfully managing congenital heart disease is continued treatment. Even patients who respond well to childhood interventions should remain under the care of their physicians, to monitor changes and manage necessary medications or devices. For adults with congenital heart disease to maintain a high quality of life, they need lifelong care from a specialist, whether an adult congenital heart expert or a pediatric cardiologist.


Pediatrix Cardiology is a national provider of outpatient and inpatient cardiology care of the fetus, infant, child and adolescent, as well as adults with congenital heart disease. Our affiliated cardiologists provide care to patients through 21 practices. Some of our physicians are already certified in Adult Congenital Heart Disease care.

Visit Pediatrix Cardiology to learn more about our services. 

Reviewed by Steven Iskowitz, MD



Adult Congenital Heart Association

American Heart Association

American Heart Association: Congenital Disease


Topics: Health Observances, Adult Congenital Cardiology