Congenital Heart Disease – Even Adults Need Special Care

Did you know that congenital heart defects affect approximately 40,000 babies each year? And now, due to advances in medicine, many of these patients are living to adulthood and there are estimated to be more than 1 million adults in the United States with congenital heart defects, according to the Centers for Disease Control (CDC).

Unfortunately, some patients and their providers have the perception that their heart defect has been “cured.” The gaps in care resulting from this misperception can be harmful. Guidelines recommend that all adults with congenital heart defects stay in regular cardiology care, and those with moderate to complex (more severe defects) should receive care in an Adult Congenital Heart Center.

Drs. Maan Jokhadar and Anurag Sahu recently held an interactive web chat about “Congenital Heart Disease – Even Adults Need Special Care.” During the chat, they answered questions and discussed various topics about Adult Congenital Heart Disease. See the full list of questions and answers in the chat transcript below!

Live Blog Adult Congenital Heart Chat
Live Blog Adult Congenital Heart Chat

  • Joanne

    Is a congenital heart defect hereditary – does it run in families?

  • Rebecca Drew

    Just a comment to affirm follow-up care for adults!
    I had heart surgery for a congenital heart defect when I was 17 years old, and I am grateful that I have the opportunity to continue my heart health with doctors who are educated in adult congenital issues. I recommend routine check-ups at least every couple years. Throughout the years, I’ve been mostly very healthy, but at one of my check-ups a few years ago, my usual echocardiogram showed that my heart was definitely not doing well. I had developed chronic blood clots which became scar tissue blocking my pulmonary arteries causing extreme pulmonary hypertension. My heart was very overworked and very weak. Thanks to my adult congenital cardiologists, I had further testing for them to figure all of this out and refer me to a pulmonologist who sent me to UCSD in San Diego to have a pulmonary thromboendarterectomy surgery which saved my life! Never dismiss the importance of your cardiology check-ups if you are an adult with congenital heart issues. Thanks for doing this discussion!

  • kelly

    i had TOF and underwent an open hear surgery at the age of 2 . I am 29 yrs old and got my MRI done. It showed 35% pulmonary regurgitation. I am planning to start a family and have baby. Will it be safe to get pregnant. will this effect my pregnancy and my health?