Congenital cardiology care is essential, even for those who are not currently experiencing symptoms. In addition to the need to manage the CHD, affected individuals remain at risk for developing acquired cardiac conditions of adulthood. These include a range of potentially serious conditions such as arrhythmias, atherosclerotic heart disease, congestive heart failure, endocarditis, hypertension, hyperlipidemia and pulmonary hypertension.

According to advocates, a primary care physician is often the only doctor a patient sees, making it critical that patients disclose their CHD to their their doctors, and for doctors to help ensure they get the specialized care they need to stay healthy and safe over the years.

“Although most individuals with CHDs require lifelong congenital cardiac care, many children and adults experience gaps in care for several years or more,” says Dr. Sherry Farr from the Centers for Disease Control and Prevention. “Whether these lapses are due to loss of insurance, financial barriers or an inaccurate belief that their heart defect has ‘been cured,’ physicians that these patients see for other reasons can facilitate continuity of cardiac care.”

Dr. Farr suggests that physicians start the conversation with patients by asking them if they ever had heart problems. After learning that a patient has a heart defect, they should then emphasize the need for continuous care, even in cases where patients feel well. Doctors should be prepared to both explain the vital role of congenital cardiologists and provide a referral for a specialist in the area. Patients with CHDs should share their health history at their appointment and be ready to ask questions and seek referrals.

The new CHD Awareness Toolkit from the American Academy of Pediatrics and Centers for Disease Control and Prevention offers resources to help physicians connect people with heart defects to the care they need. It includes materials for pediatricians and family physicians (who treat children), internal medicine physicians and family physicians (who treat adults), obstetrician-gynecologists and emergency room physicians. To learn more or to download the toolkit, visit aap.org/CHDcare.

People with heart defects need lifelong congenital cardiac care. By getting the conversation started, patients and physicians can help ensure continuity of care.