Pediatric HealthSource: Congenital Heart Disease

Staff Writer
Columbus Parent

Q: My daughter was born with congenital heart disease. She's received treatment and is practically an adult, so she can stop worrying about her heart, right?

A: With the diagnosis of congenital heart disease comes several myths and misconceptions about the condition, its treatment and its timeline. It is important for parents to understand that congenital heart disease isn't something that will go away as a child grows up.

Myth: I'm an adult now and my heart was fixed, so I don't need to keep thinking about treatment.As treatment methods improve, children with congenital heart disease are entering into adulthood and living fuller, longer lives. However, this is a lifelong condition, which means patients need to continue seeing a congenital heart disease cardiologist in order to stay healthy.

Myth: This kind of heart defect just affects kids. Congenital heart disease is actually the most common birth defect in the country. It affects one out of every 120 babies, and current estimates show more than 1 million adults are living with congenital heart disease in the United States.

Once a patient reaches 12 or 13 years old, conversations should start with his or her primary care physician and cardiologist about what is next in the treatment timeline and what steps can be taken during the transition into adolescence and adulthood. Congenital heart disease is a condition that requires lifelong follow-up care in order to ensure patients live the fullest lives possible.

—Curt Daniels, MD, is Director of theAdolescent and Adult Congenital Heart Disease Program at The Heart Center at Nationwide Children's Hospital.

Tip of the Month


Transitioning to adult care can be an overwhelming experience for teenagers with congenital heart disease.

In order to help them embrace their independence with their medical care, patients (and parents) should:

Know your history – Keep track of what types of surgeries happened and when, stay on top of health records and be able to articulate this information to future medical providers.

Learn your medications – Patients should know the name, dose, frequency and reason for taking their medications.

Communicate – Practice appointment scheduling, calling in refills and calling your physician with any symptoms, questions or concerns.

Always consult your child's pediatrician concerning your child's health.

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