cardiology « Struggling to Thrive

Sometimes children with Noonan’s Syndrome are born with heart problems or develop them early in life. Because of this and other unrelated concerns, we’ve monitored our son’s heart since before he was born. This past week I was thankful we did. It’s not otherwise apparent that one of his ventricles is growing at an unhealthy rate. We’re expecting a call from a surgeon any day now to place a catheter up through his leg to measure the pressures inside of his heart.

I’m told this sounds significantly scarier than it is. My husband knows at least one person who’s undergone this procedure multiple times. That’s not overly comforting when your two-year-old is the one going in. I’m terrified honestly. We’ve recently discovered he has Von Hildebrandt’s Type 1. If they need access to his vein, that’s clearly going to involve some bleeding. The medicine challenge they performed a few months ago didn’t last as long as it should have. While they’re not ruling it out – they want to try again after he turns three – that does mean he’ll need two different drugs to help him clot after the procedure is over.

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It’s sometimes difficult to understand what your primary care doctor is trying to tell you, but they’re used to explaining. Some can tell by the look on your face you don’t get it, and immediately just give you a five second rundown of what the term they just used means. Even better, many primary physicians don’t hardly use medical terminology at all.

Your child’s pediatrician is similar, but what happens when you have more than just a pediatrician? Medical terminology is a massive hurdle to overcome. If you’re working with a specialist you’ve never seen before it’s especially overwhelming. First, here’s a list of things you can do to ease the pain when talking to a new specialist, or a familiar specialist about an unfamiliar problem.

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