You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification ā€“ the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.

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7 Responses to “GAMECHANGER”

  1. mendedlittlehearts Says:

    Thanks to the nearly one hundred CHD patients, families and medical professionals who wrote letters in support of this. WAY TO GO! Your voices were heard – loud and clear!!!

  2. Kristine Says:

    What awesome, awesome news!!! Certainly worth a Saturday post. Thanks for sharing right away.

  3. Becki Bennett-Mobley Says:

    What a huge step! I hope that London will be able to take advantage of this, I have no idea how long his ped card will follow him for, however, I have spoken with different adult cardiologists out there & there is no way I am wanting him to have to see one of them, they all told me that there was no way my son could possibly have HLHS, that I must be lying, because no one who has HLHS lives! Well, let me tell you something Dr, my son not only live with half a heart & 4 open-hearts so far, he is thriving! But that is the last they learned, was when they were in med school & at that time, they did not live that long, but they are not required to ever study CHD’s again, so they are not trained to help our kids who until recently did not survive at all. Recently, meaning the past 20-30 years. I’m glad you have a great dr & he was able to follow you, I’m not sure how it works, whether all adults have that ability, to still see a ped card or if they have to see a regular adult card, but this will be wonderful for everyone, in the future.

    • Steve Says:

      It will be great! I’ve been very fortunate to have good doctors – all the way back to my general pediatrician when I was just a couple of months old – who were willing to go to bat for me. Sometimes you just have to keep looking, and when you find a good doc, GRAB! And if there is one day when he/she doesn’t feel comfortable in providing care, ask “Who would you recommend? Who would you take YOUR child to?”

  4. Jill Haskins Says:

    That is SUCH great news! That gives me so much hope for Joshua’s future! Thanks for sharing Steve!

  5. ashleyburgess Says:

    This is so exciting!!!

  6. carolyn Says:

    They’d have to know all aspects of adult cardiac care…imagine a centenarian CHD patient with blocked arteries *tongue in cheek*

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