If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.
It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.
Today is National Wear Red Day for the Go Red for Women campaign from the American Heart Association. I’m wearing my red, not just because I think heart health is important, or because I know that heart disease is the #1 killer of women (heart disease and stroke kill 1 in 3), but because this fight is personal for me: I’m a survivor. Not just in a Beyonce sense, but as a literal actual survivor of a congenital heart defect, a cardiac pregnancy complication, and heart failure.
On April 1, 2012, I was three days post-c-section. My recovery had gone slower than most, and I was still in the hospital, a fact for which I now thank God. In the wee hours of the morning, I woke up and finally felt strong enough to try to walk the few feet from my hospital bed to the bathroom. It felt triumphant. My husband assisted me, one of our new babies nearby in a bassinet*. But as I inched my way back to my hospital bed, every inch of my recently-ripped-apart abdomen screaming in pain, I found it hard to catch my breath. “I can’t breathe,” I said to Jon. He’s an ER doctor, and his mantra is generally “if you can talk, you can breathe,” so he helped me back into bed and told me to relax and catch my breath. But even after sitting down, it was getting harder and harder to fill my lungs with air. Continue reading “Why I Go Red for Women: I’m a Survivor”