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When People Ask If My Son With a Congenital Heart Defect Has Been ‘Fixed’

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Is he fixed? That’s the ongoing question we get when someone we know asks about our son Elijah’s heart condition. The simple answer is no; he is not “fixed.” He will never be fixed. He was born with a congenital heart defect (CHD) called Tetralogy of Fallot. You cannot just “fix” a congenital heart defect.

When Elijah was born, his heart wasn’t functioning properly due to structural abnormalities. There were four in total. You can correct them, but you can’t fix them. Elijah will always be under the care of medical professionals, and he may need more surgeries. In fact, it’s highly likely he will.

Yes, he may look well and happy, but no, he is not “fixed.” You cannot “fix” a heart. His heart — no matter how many surgeries — won’t be the same as someone who wasn’t born with CHD. It won’t work like it either, so please stop asking us. It’s just an ongoing reminder that my son has a heart condition that will affect him for the rest of his life.

I appreciate those who take an interest in Elijah’s condition and ask questions. I’m happy to educate them about his condition. But please choose your words carefully. As the parent of a child with CHD, I’ve spent days upon days wishing there was a way to “fix” my son. It’s just a kick to the stomach that no, I can’t fix him. No one can.

To be a parent, you should be able to do whatever you can to stop your child from being ill, from hurting and to make them better again. I couldn’t do this, and it added to my guilt.

Elijah was very lucky. In the first hours of being born, he had “dusky episodes,” where he went blue/purple for a few seconds and then back to normal. He only ever had one episode at home, which was due to bronchiolitis.

Elijah looked like any baby of his age, and he didn’t get ill that often, either. Of course, it made me slightly more protective, and we kept him in our room until after his operation. I didn’t put him in nursery or leave him with many people. Immediate family and friends were briefed on what to do if Elijah had an episode, but truth be told, it never happened. It wasn’t until after the operation that I realized the difference his color. He was pink and healthy. It was almost instantaneous.

The operation patched the hole in Elijah’s heart, but unfortunately the narrow valve couldn’t be saved and was removed and replaced. And some of the thickening muscle was cut back. Depending on how he grows, Elijah may need more surgery to replace the valve again. So while he may be repaired for now, he isn’t “fixed.”

I find it hard as a heart mom to both appreciate someone’s concern and then not be offended by it. But I do resent being asked if he is “fixed,” as if he were a faulty electrical appliance that has been sent away to be repaired. He’s a little boy, not a vacuum cleaner, and has a lifelong heart condition that can’t be fixed. CHD will never go away.

I like to think of Elijah’s scars as a mark of the amazing journey he’s been on. His heart is a patchwork of strength, but it does always bring me back to the realization that he has CHD. No matter how many good days pass (appointments have been reduced to just once a year, and he is passing reviews with flying colors), he still isn’t “fixed.” He never will be. So before you ask, please stop and think about what you are saying. There are so many other ways to ask, and so many ways we as heart parents can answer.

To make everyone more CHD aware, we need to make it more accessible. Let’s talk about it. Start a conversation and begin to educate others about the effects and symptoms of CHD.

We also need to make it known what not to ask. After all, this is our lives as heart families, and we have a right to voice our opinions about the one subject matter that we will be talking about for the rest of our lives.

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Originally published: December 16, 2016
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