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9 Things of Kids With Congenital Heart Defects Want You to know

Here are nine things parents of children with a congenital heart defect (CHD) want you to know, but may be too scared to say:

1. My child’s diagnosis is most likely worse than you think it is.

One of the wonderful but difficult realities of CHD is that children often don’t look as sick as they are.

Therefore, when we post pictures or you see our children in person, it can be tempting to question the severity of their condition based on the way they look. CHD is very much an internal disease that can manifest itself outward, but it doesn’t always do so.

2. CHD is lifelong.

“So is she cured now?” is a question I was asked many times after my daughter’s first open-heart surgery. This is one of the most challenging concepts to convey about CHD. Having this disease means there is something structurally wrong with the heart. There are surgeries to help “fix” these issues, but many of them are bandages to buy a child time until it’s time for a new one.

Each time a surgeon goes into a child’s heart, he is altering something in order to help the heart function as a normal heart should, but he isn’t constructing a normal heart. He can’t.

If a baby is born with an abnormal heart, that heart will never be normal. It will never be “cured.” It might be improved. It might be mended. But normal? No. Never normal. People born with CHD live with CHD their entire lives.

3. I am not overreacting.

We don’t mean to come off strong with our pro-vaccination stances and continual use of hand sanitizer, but we’re trying to prevent my child from dying. Literally. Any illness that a person with a healthy heart goes through could very well kill a child with CHD.

The health of one’s heart controls so much of the health of other organs. Children with CHD are often immunosuppressed and don’t have the respiratory reserve to handle the additional work the lungs would need to do in the case of a severe illness, the flu or even the common cold.

We wish we didn’t have to make sure everyone who comes to our home had a flu shot. We would love to be able to take our children to the park without thinking about it. We hope one day to be able to stand in an elevator without holding our breath or touching the buttons with our elbows for fear of picking up germs. But we can’t, and some of us never will.

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