Getting there

Every six months or so I feel the need to mention this information again: Perhaps there are readers of Funky Heart who are new to the Congenital Heart Defect world and they don’t have their bearings yet. All of this came crashing down on them like a ton of bricks. In a few short weeks they’ve learned an entirely new language, met doctors they didn’t expect to meet, and learned what the phrase right now truly means. And you wonder if this madness will ever end.

The short answer is no. Your child will need specialized medical care all of his life. But we’re getting better at it. Today, 90% of all children who have open heart surgery survive to become adults. 75% of all children with Hypoplastic Left Heart Syndrome (HLHS) survive the three surgery procedure needed to live. That’s too low to be acceptable, but in 1980 there was no surgical option at all and the survival rate was close to 0% – a lucky few were able to get a heart transplant.

To educate yourself about your child’s heart defect, go to THIS LINK; it is excellent. The American Heart Association has some good information, and THIS ONE is probably the best.

If your Cardiac Kid is in his/her teens, it’s time to be thinking about moving them to Adult Cardiac Care. You can’t just pick an adult cardiologist out of a phone book, they aren’t trained to deal with patients who have CHD’s. You need someone who is trained to deal with Congenital Heart Defects but can see it from an adult perspective.  There aren’t that many of them (yet), so you need to go here and read the patient summary of the BETHESDA 32 REPORT. At the bottom of the page is a link to download the entire report as a .pdf file, you need to download it, print it (have plenty of paper for your printer; it is long) and read it carefully. It will give you an outline about how to move your child from a Pediatric Cardiologist to Adult Care. Also of interest is THIS REPORT (in .pdf format) from the National Heart, Lung, and Blood Institute (NHBLI). It’s only 9 pages long; print it and read it.

The ultimate goal is to enable Congenital Heart Defect survivors to live longer, better, and more fulfilling lives. Like the adults in this video produced by the Adult Congenital Heart Association (ACHA):

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3 Responses to “Getting there”

  1. Kelly Says:

    Great post Steve…great video too. Always appreciate the way you tell the plain truth and then remind us of all the survivors. So glad you’re our friend.

  2. carolyn compton Says:


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