(StatePoint) Congenital heart defects (CHDs) are the most common birth defects and doctors and affected families can help ensure that individuals with CHDs receive lifelong congenital cardiac care to stay healthy. In 2010, it was estimated that approximately 1 million children and 1.4 million adults were living with a CHD in the United States. However, about 60% of individuals with CHDs don’t see a congenital cardiology specialist after age 18 for follow-up.
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.
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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.
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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.