Are you lost?

There’s a new report just published in the journal Circulation that confirms something that’s been known for a while: Congenital Heart Defect (CHD) Survivors are often lost to follow-up care. This report specifically studied CHD patients born in Quebec in 1983, a total of 643 people. The findings state that CHDers begin to fall away from Cardiac Care as early as the age of 6, and by the time they reach adulthood, 61% of all Heart Warriors aren’t seeing a Cardiologist. Those of us classified as having a severe CHD do better; by the age of eighteen 21% of us had stopped seeing a heart doctor.

While these patients had not followed through on their Cardiac Care, 93% of them continued to see a doctor for other needs. It is not known if they had been told that their heart problems had been “fixed” (a common misconception) or they were just avoiding the issue.

The Adult Congenital Heart Association‘s (ACHA) “Don’t Get Lost” program is our effort to make sure that Adults with heart defects get the care they need. Even though for many years our doctors told us we were “fixed” and sent us on our merry way, research is proving that is not true. All hearts undergo changes as they grow older, but because of our defects, some of the changes are unique to CHD Survivors. We’ll need to stay in contact with Congenital Cardiologists all of our lives.

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5 Responses to “Are you lost?”

  1. Linda D. Says:

    So exactly what is a “severe” CHD?? I don’t think any of them are really not severe unless it’s something that requires no intervention.

    It wasn’t until I was a parent of a CHD kid that I realized that even something like ToF needed lifelong follow-up, and this is a defect that was one of the earliest ones to have surgery done on it. The common preception in the lay public is that once the surgery happens, the kid is “fixed” for good. I didn’t know until recently that a ToF kid can have rhythm problems later on. Or what about needing a valve placed later on?

    The only way to change this perception is to keep on educating the lay public.

  2. Aviva Says:

    So my kid had a minor congenital heart defect when she was born. We were told she had three holes in her heart, but none of them were considered big enough or serious enough to need surgery. By the time she was a year old, we were told that her heart had healed itself and she was fine.

    Are kids like her included among those who should be followed even as an adult? Or “just” those kids who needed surgery?


    (Fwiw, I found your blog through Patients for a Moment. 🙂

    • Steve Says:

      The American College of Cardiology classifies a self closing Atrial Septal Defect (ASD) as a “simple defect” – they think that your daughter can be cared for in the general medical community, with only the need for limited Cardiologist care (yearly, perhaps? Probably just to make sure nothing new has developed.)

      • Aviva Says:

        I’m pretty sure Ellie’s was a VSD, although I have it written in her baby book. I guess I should go look it up to be sure. Yup, it was a VSD. I’m guessing it’s the same classification from the American College of Cardiology?

        We saw a pediatric cardiologist when she was a newborn, but once he determined that surgery wouldn’t be necessary after all — which was a major relief! — he said her pediatrician could monitor her and that when the ped could no longer hear the murmur on exam, she would be declared fine. And that’s pretty much what happened. She had an echo done at birth and at about 4 months old, where they confirmed that the holes were slowly closing and we were told we didn’t need to see the cardiologist again.

        Thanks so much for writing about this, and for answering my question. It’s good to know as a parent that it’s something we need to make sure gets checked periodically and that it doesn’t get forgotten about as she grows up.

  3. Deepti Says:

    I think you’re right. I’ve started bunking my annual check-ups – in the past two years, I’ve gone just twice. My mother usually tries to make sure I’m in for a check-up at least every 18 months, but after staying away from home, I either haven’t found the time or my cardiologist has been too busy and he’s in another city. But I HAVE been to the dentist, the physician, the gynaecologist, the everyone else, for a number of other perceived illnesses.

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