How to parent a child with a congenital heart defect

June 19, 2013 mommytoaheartkid


I remember when I was pregnant with Ava, and we had very recently found out about her heart defect, when my mother in law shoved a printed copy of a website in my face and said, “See what you’re about to face, trying to deal with a kid with a heart defect?!”

I know she wasn’t trying to be mean, but jeez–I had just found out that my baby had a broken heart.  I wasn’t ready to think about how it was going to impact our future.

I read the article.  I shouldn’t have.  That’s why I titled this post “How to parent a child with a heart defect”–just in case someone else’s mother in law is searching for “how much your life is going to change and how absolutely terrible it’s going to be.” ;]

The article basically told me that I was going to live in a hospital for the rest of my child’s life, and that we would have at least 10 prescriptions to give her, probably hourly forever, and how delayed she would be because of blah, blah, blah…

We did live in the hospital for a while, I do have to give her 2 prescriptions a day, but delayed? Nope.

Point is– this article was wrong.  And I’m not saying that there’s not a possibility of any of the above happening.  There absolutely is.

But do you know what it’s like for me to parent a child with CHD? Normal. It’s like any other family, with any other kid.  And I know–this is not always the case!  We’re blessed beyond words and so lucky that Ava is otherwise healthy, and happy, and just an all around great kid.  But more often than not, this is the case.  Your child will laugh, and smile, and walk, and throw tantrums, and bite you, and kick… Well, maybe not–but that’s where we’re at right now.

There will be surgeries.  There will be procedures.  This is pretty much inevitable as you enter the world of CHD.  There will be worry, and fear of the unknown, and hopes and wishes.  But, doesn’t that sound a lot like parenthood anyways?

Maybe I have a different take on things–because I don’t have a “healthy” kid.  I didn’t have one before Ava, and I won’t have one after.  I have a “heart kid” and that’s just how it is.  But I can’t see anything that we do–on a day to day basis–that’s harder, or more out of the ordinary.

Sure, we hit some milestones a little late, but we hit others really early.  Ava learned to walk, and run, and feed herself.  And then she had a stroke–and learned all over again! ;]  But that’s an entirely different story, and not the “norm”.

CHD life doesn’t come without it’s own obstacles and road blocks, but I’m not so sure these are any different from “healthy” kids obstacles and road blocks.

My point is, you are not doomed to a life of hospitals and medications and incapable kids.  Life is going to go on.  Your kids will adapt, you will adapt, and you will have lots of normal days.  You’ll make memories, you’ll laugh together, you’ll connect.  Can it be frustrating? Sure.  But that’s usually not because of the CHD. ;]

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One Comment Add your own

  • 1. kristi siemantel  |  June 20, 2013 at 8:14 PM

    You have given hope and joy with this entry. Your writing will spare an expectant mama the anguish that you may have felt whenever you read that article during your pregnancy.
    Love,
    Iris


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