Don’t trust the Funky Heart!

You can read anything on the Internet. Anyone with a computer and a little knowledge can post whatever they want. In fact, I hear that “Funky Heart” guy is really a 31 year old Supermodel living in one of the suites of the Toronto Skydome. She’s looking for a new home, because they renamed Skydome “Rogers Centre” and her former husband is named Rogers, and she can’t stand the guy. I read it on the Internet, so it must be true!

One of the best resources on the internet is Google Alerts. Create an alert for anything you want – your name, for example – and Google Alerts will send you an e-mail anytime it detects what you are interested in. Now most of what I write about comes from my personal experience, but I have a group of Alerts set up for various terms related to Congenital Heart Defects. I may find something that you need to read, or an article could remind me to write a post that you might find interesting. They are very useful!

So I’m looking through my Google Alerts this morning and I’m pointed to an article that reads:

In regard to congenital heart disease treatment, most of the times the disease is easily rectified through use of surgical procedures; in some instances in fact there isn’t even any need to get congenital heart disease treatment performed. In any case, whether or not a person gets congenital heart disease treatment they can still hope to live a better, fuller and healthier life.

What the…? Ask anyone with a Heart Defect (or their parents) if the disease was “easily rectified” and see what they tell you. But it gets better:

Most surgical procedures can effectively fix congenital heart disease problems though even after the procedure has been completed there is always need for ongoing medical care because there is the lurking danger that the patient might soon develop disorders of their heart rhythm or develops endocarditis as a result of the surgery.

No, no, no… the Adult Congenital Heart Association (ACHA) exists to try to improve lifelong medical care for adults with a Heart Defect, but according to this writer, there’s no reason for the ACHA to exist. After all, most heart defects can be fixed, and all you have  to watch out for is events that would occur “soon” after surgery.There wasn’t a comment form on this webpage and no way to contact the author, so I couldn’t give him/her a piece of my mind.

I will state this as simply as I can: If you are a parent and you follow this advice, your child will die. It is that simple: A Congenital Heart Defect is a complex, difficult health issue that requires lifelong medical care. There are no simple answers and no quick fixes. Even the more easily corrected defects (such as an ASD) require monitoring.

So here’s what you need to do… Don’t trust me. Assume, if you want, that I am just an idiot with a keyboard and an Internet connection. Get the medical books. Learn everything you can about your (or your child’s) Heart Defect. Sit down with the doctors, and when he starts to slip into Medical Speak, ask him to explain it on your level. Go only to sources that you trust. Learn, learn, learn, and Keep Learning. Things change fast in Cardiology – someone born on the day of the first Blalock-Taussig Shunt isn’t old enough to retire yet. And until the 1980’s Hypoplastic Left Heart Syndrome (HLHS) was 100% fatal. Reagan was President when they had the first successes there… and that wasn’t that long ago.

And remember that what you read on the Internet ain’t always so!

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5 Responses to “Don’t trust the Funky Heart!”

  1. Kelly Says:

    Way to go Steve. Bingo! Please God may this mythology cease! It’s so devestating when parents realize the truth….or worse when they never realize and tragedy happens. Remember Tracy in DC…she hadn’t seen a Dr. in 30 years following her open heart surgery. She still had a double aortic arch and vascular ring. Thanks for getting the word out. Kelly
    ps…hope the revenge of Wendy’s has ceased.

  2. Flippant Snippets From A Demented Techie » You said what? CHD can be “fixed”? O really? Says:

    […] morning, I was catching up on my blog reading and caught this little snippet from Steve over at The Funky Heart: What the…? Ask anyone with a Heart Defect (or their parents) if the disease was “easily […]

  3. The Stupid is strong in this one, Lord Vader! « Adventures of a Funky Heart! Says:

    […] know we had an earlier post about this subject, but the point needs to be slammed home: Do your own research, and only follow […]

  4. Shaun M. Thomas Says:

    Ok, I won’t trust you. 🙂

    While I definitely recommend lifelong monitoring, we were poor transients, so I didn’t get any after my surgery, and never even saw a cardiologist for twenty years until I decided it might be a good idea to make sure everything was still OK in there. So, suggesting a child “will die” without continuous medical care is just slightly naive, though considering your history, I’m not surprised you feel that way.

    I know I’m one of the lucky ones so far without serious post-surgery complications, and no parent should ever take my example as representative. A child may not die, but he or she is at much greater risk than otherwise, and having a children’s cardiologist on hand will make it easier to transition to adult care later.

    • Steve Says:

      The post I was quoting implies that a CHD is “easily rectified” and surgery may not be necessary. That’s a dangerous thing to assume… “I’ll get over this cold in a day or so!” Like I said, don’t trust me. Do your own research on your own situation.

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