How do you tell your child they have a genetic heart condition?

Telling your child they have a genetic diseaseWhere the hell is that in the parent guide books?! Seriously, where is it?

“Hey honey, looks like you not only got your uncle’s name you also got the condition that killed him and almost killed your momma. Hell, still might kill your momma…and you. Sorry about that.”

Yep, serious suckage. But this isn’t about me, this is about having to tell one of the most precious people in the world to me that I gave them something awful. That there is nothing to be done, but to wait and to see.

So we didn’t say that to my near eight year old. In fact we forgot to even tell her the name of the disease, Arrhythmogenic Right Ventricular Dysplasia/Cardiacmyopathy also known as ARVD/C.

On this rainy, quiet afternoon while her younger sibling napped, we curled up on the sofa with her and told her we’d be going to see a pediatric cardiologist soon. We told her that a recent blood draw had shown that her body, like mine, had this little bit that wasn’t functioning right, that it didn’t always make the stuff her heart might need it to. That for some people this wasn’t a big deal and for others it was a big deal. No need to deny that, there is no way around it, she knows of our family history. We were honest, we didn’t know what it meant for her, but we did know that we were glad to have the information so that the doctors could watch her more carefully; that if she needs medicine to help her heart we would know now. We talked about her friends who face epilepsy and diabetes every day, how this was just the thing she had to face.

She told us how she didn’t want to die of a cardiac arrest. She made the connection between the gene and possible outcome.

Could she tell her two best friends? ‘Yes, you can my love.’

Then she asked if she could watch Wild Kratts. And it was all over.

While we watched the Tasmanian Devil episode of Wild Kratts for about the 50th time, I wondered if we had done a disservice to her not explaining the true implications of ARVD. But at eight, how much can you handle? She needs to know not to ignore symptoms and to tell us about them. She needs to know that we’re going to be seeing the pediatric cardiologist shortly. She needs to know that not everyone who has this gene mutation develops the symptoms as a result (although most do).  She needs to know we’ll do everything in our power to keep her safe. She doesn’t need to know it’s progressive at this time. She doesn’t need to know that an Implantable Cardiac Defibrillator is a possibility in her future. She doesn’t need that information yet.

Before we talked with her I touched base with a genetic counselor who specializes in pediatric concerns and confirmed what I suspected.

1. If it could affect her at her young age then a discussion should happen.
ARVD can impact children, although it seems to be mainly teens where the disease first shows up. This is not like the BRCA genes where they don’t test children with first degree relatives who carry the BRCA mutations until they’re 18. They don’t test those children, because what could be done in advance of the adult years?

2. Keep it simple
We didn’t enter into a major conversation with loads of details.  We did the KISS approach. We answered the questions as she asked them, but we didn’t go into all the details at once. That would be overload. No need to talk about the implications for the future.

3. Control the environment
This was no rushed conversation before a doctor’s appointment. We knew that we had some quiet time to talk and discuss. She was somewhere she felt safe.

4. Keep it calm
It’s taken me two weeks since I received the information that my daughter has a mutation that causes ARVD to be able to talk about it without crying. I didn’t want to talk about it to her and burst into tears although I still do cry most days about it. We practiced a few times with other people before talking to her. Those pseudo trials with other folks helped a lot.


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