Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte Speaks Up — A Heart Update

We’ve always told Charlotte that she will eventually be able to read her body and tell us when it has time to go to the doctor. We just never thought it would happen before she hit adolescence. But, Charlotte has been a self-aware and observant child from the beginning, so I guess we should have been prepared.

C on stage GCFAS

A week or so ago, Charlotte told me that she had had chest pains after running hard during a game of tag. I asked if it felt like her usual chest pains* (typically caused by reflux). She said no. She mentioned it again the next day and I asked if she was concerned. She said, “Not concerned. Worried.”In the past month, she  has reported being tired after thirty minutes of horseback riding (at her level it is seriously not that strenuous a sport) and slept for 13 hours the first night of her October vacation.  I have no doubt something is going on. So, I shot an email to her cardiologist and we’ll be going in for her check up next week–5 months earlier than anticipated. Needless to say, Philippe and I are now worried, too.

Charlotte’s last intervention was a cardiac catheterization and balloon procedure in October 2012. Drs. Gossett and Young  both told us that while the procedure was incredibly successful, it might buy us a few years (or 2 to 3 years, depending on who remembers the conversation) until we’d need to talk about surgery, or some other intervention. We’re just past 2 years on that intervention.

To put this in perspective–which I am desperately trying to do–Charlotte’s last repair was in March 2007. She was 20 months old. She bounced back after surgery beautifully and grew 4 inches almost overnight. It was evident how necessary the surgery was when we saw her renewed energy and sudden growth, not to mention her quick weaning from the g-tube.  The anesthesiologist at the time told us he’d never seen a conduit that large put in a small child and that he was sure the repair could last for a long, long time. Even close to 10 years. Well, we’re close to 8 years on that repair.

We don’t know what we’re in for, other than the roller coaster ride of remembering that our jewel is a heart patient and always will be. It’s not all she is, not by a long shot. But her heart, both literally and metaphorically, defines our family in so many ways. Sometimes, like this week, it defines our focus. Sometimes, like in the photo of Charlotte on stage at the Gold Coast Fashion Award Show in September, it defines our philanthropic bent.  That’s the literal heart, of course. As I work to keep things in perspective, I’m reminded that her metaphorical heart truly defines us by reminding us that there is wonder in the world, compassion in great droves when you least expect it, and laughter to help heal all things.

Please keep Charlotte in your thoughts this week.