3.5 years ago the world caved in around us when we were told our daughter had Down syndrome. It wasn’t completely unexpected, as I had had a (1:158) chance of having a child with Ds. What knocked me to my knees was hearing that she had a heart defect (AVSD and VSD), and would more than likely need surgery before the age of one. We couldn’t bear the idea of another one of our infants having a major operation.
Against all odds, Claire’s heart defect became a somewhat medical marvel. She was completely asymptomatic and threw every cardiologist for a loop. My favorite memory of this is from a Children’s Colorado appointment – at one point I looked around and there were 10 people in our tiny room. Our cardiologist had brought in a second cardiologist, the echo tech, two fellows, several residents, and a med student. “This child should be requiring surgery. Why doesn’t she?” (I now appreciated the look of panic from being “pimped” that Adam mentioned so often!)
A few weeks ago we received devastating news – Claire’s heart issues have worsened significantly, and she will require open heart surgery sooner than we expected. We went into the appointment assuming it to be a routine, 6-month cardiology echo and EKG. What we heard instead was that her mitral valve regurgitation has gotten worse. Long story short, Claire will be having surgery November 27th at Mayo Clinic in Rochester. I’m told her surgeon is one of the best in the country.
I cried for 5 straight days. The devastation I felt after leaving that appointment is something I wish on no one. I’ve never been more thankful for Adam and his ability to deal with my wild range of emotions.
The sounds and smells of a post-op room and PICU rooms linger after almost six years. The beeping of a coffee maker can make my heart race as I remember the pulse ox monitors screaming that Sam was in trouble. Anxiety, depression, and PTSD are a part of my world that I rarely mention. I’m not excited to revisit those feelings.
But those feelings pale in comparison to the heartache I have when I think about Claire having to go through this surgery. There’s nothing I can tell her to prepare her for what’s about to come. She is small but strong, and I know she will blow my expectations out of the water. I have no doubt of this. She still appears asymptomatic, which somehow makes the news of her surgery harder to bear. I think it would be easier if she was blue and in distress.
We will keep you all updated about the surgery and Claire’s new journey into the Zipper Club.