REPAIRED, not fixed

“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.

While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).

Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.

As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:

After many years, the patch that was used to correct the defect began to tear and needed to be repaired.

Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.

The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.

90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.

Then we can go conquer the world!

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8 Responses to “REPAIRED, not fixed”

  1. Twitted by laanykidsmom Says:

    […] This post was Twitted by laanykidsmom […]

  2. carolyn compton Says:

    I was chatting to a friend who just doesn’t get the fact that my boy Clarry (two and a half) has tricuspid atresia and all that it means. I explained how we were in hospital for two nights with swine flu, and she still didn’t get it. I mentioned that his O2 saturation was in the 60’s and he’s normally meant to be 85%….and she still didn’t get it.

    I don’t get how to tell her, really…so I’ll just keep trying!! 🙂

  3. Twitted by Charlesfmiller Says:

    […] This post was Twitted by Charlesfmiller […]

  4. Charles F Miller Says:

    Our daughter is 18 years old and has had 10 cardiac surgeries (BT Shunt, Fontan, ablations, pacemaker, etc)….and people still will say “so how is she doing…is she fixed now?” People simply don’t understand the complex nature of heart disease and what it means to children born with CHD. We just have to keep educating in a kind manner. No one can understand unless they have “been there.” 🙂

  5. Slatosky Says:

    I frequently get people saying “But she’s all better now! Look at her!” when they hear how well my daughter (Juliet, TGA, ASD, VSD) is doing. I’ve given up on correcting the ‘all better’ part and saying instead ‘Yeah! She’s doing very well! I hope it stays that way!’. I think people cannot grasp that this is indeed a complex thing with many variables. Yes, she’s doing wonderful now, but it’s a long way from saying she’ll be doing this good at 18.

  6. Carrie Aranda Says:

    I agree. My 2 year old son has HLHS. He is currently between the Glenn and the Fontan. We get asked all of the time if after the next surgery he will be “done” and “all better”. We usually smile as say that we hope that the surgery will be his last. When they ask if his heart is “fixed”, we say say, “No they are just fixing his body to work with half of a heart”. Talk about some interesting looks.

  7. Marie Says:

    I wish I had read this post a year ago. We were in a happy place of denial with our daughter Anna ( age 8, CAVCD, DORV, PS, Heterotaxy, & ADD). Her last surgery was when she was four years old. We sailed through four years with check-ups and one little catheterization. Then, out of nowhere she started getting blue. Her cardiologist told us that she was expereiencing a very rare complication to the Fontan and they’d have to go back in the repair or redo the Fontan. So, the familiar CHD heartache came flooding back. Only this time we had a very aware, impressionable and savvy eight year to deliver for surgery. Telling her in the exactly right way so as not to scare her was something I agonized over for weeks. We were so blindsided by the possibilty of surgery because she had been doing so well for so long. We worked so hard to never treat her as a “sick kid” that her heart condition was kind of forgotten. In the end, with thanks to brilliant doctors, the repairs were made via a catheter and not surgery. I think from here on out, I will always know in my head that future surgeries are possible. Perhaps I won’t be as surprised by it next time.

  8. Deepti Says:

    I am almost 24 now, and after two surgeries for TA, a Fontan and a Pulmonary Banding (both done before I was 1) I have never had to get back into hospital. Except for annual check-ups. And apart from an iron tonic and a baby dose of blood thinner (and that only once I started my period), I have been taking absolutely no medication all these years. Zilch. Touch wood!

    Somehow, I do know at the back of my mind that a day will come when I will have to be a “heart patient” again. Everyday I am reminded in some way or the other that my defect is not cured for good. I read posts like the above one, and am terrified of that day. Till then, I shall keep myself in denial and keep my fingers crossed, praying everything goes smoothly.

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