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Fear, False Positives and Strong Hearts

I know my last post was cryptic – purposefully as to protect our son, and also because there is only so much I’m prepared to share publicly.

But with data and time, I’m ready to pull back the curtain a bit more, both to offer my thanks and gratitude to those of you who have sent your love and support, and to tell you all that I learned that I wish I had known a few weeks ago.

Long story very short, our son had been having “attacks” which led his pediatrician to recommend a EKG which revealed a left ventricle hypertrophy. Words like “sudden cardiac  death,” “not worried” and “we’ll watch it” were thrown my way (by the way, for all doctors out there, those are not words that go together, at least not in this mom’s brain), and pushed me into high alert.

As the attacks have subsided, and time passed, the alert level has moved from screaming red to shades of orange, but today with the help of the experts at Mass General, we are back in the green, because our son’s heart is strong, young and healthy.

Through this process, I’ve learned how hard it can be to let go. To trust that he will be okay. To let myself focus on other things when all you want to do is focus on him. While I would have liked to just carry him on my hip the way I did when he was little, that just wasn’t possible – he’s too big and he wouldn’t stand for it anyway!

I’ve learned, again, how fortunate we are to have the support system we do – family, friends, neighbors and clients have all given us hugs, cut us some slack, and been behind us as we tried our best to figure out what was going on. That may seem like much as I write it here, but it has been everything.

I’ve learned about the current debate about whether or not teenagers should be screened automatically for heart issues – a school nurse told me she believes all athletes should be screened, while our cardiologist expressed concerns because it can lead to many false positives, unnecessary stress and expensive follow up testing. (All  three of which we have experienced in the past few weeks, and will continue to experience as the bills start to roll in).

I have also learned how unprepared we, our son’s parents, are when it came to dealing with the risk of sudden cardiac arrest. According to a 2013 New York Times article, “the No. 1 killer of young athletes is sudden cardiac arrest, typically brought on by a pre-existing, detectable condition that could have been treated.”

The number 1 killer???

It was with new eyes that I, and those who love, care and guide our son, have looked around and wondered. . . what would we do? Are we prepared? Are we CPR certified? Do we have access to AEDs? Should we have access to AEDs? What does someone in cardiac arrest look like? Who should we call? When do we call?

Even as I write this, knowing our son is healthy, my brain is shot full of adrenaline.

When we were in the waiting place – with him cleared to play but waiting for more data, I counted ourselves as lucky because if the diagnosis was correct, we knew to watch him. Knew to be on alert.

Now that he is cleared, I still feel fortunate that we could take something away from it – that because of the false positive we (his parents, our coaches, the teachers) are thinking about what could have been and planning for what could be.

2 thoughts on “Fear, False Positives and Strong Hearts

  1. Oh Kristin…I’m keeping you all in my thoughts and prayers anyway, even with this “good news” (I don’t feel like you are 100% in the clear yet)… Bisous from Paris

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  2. So glad to hear that he’s been cleared and thankful to you for sharing your experience. There’s definitely so much we don’t know about these types of things and knowledge is definitely power.

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