Last summer she had an episode of torsades des pointes so, a cardiac arrhythmia, and lost consciousness because of that. After the episode over the summer, we decided to go ahead with the sympathectomy. The morning of the surgery she was really anxious and actually tried to leave the hospital several times, so they had to give her a little something to calm her down before the surgery. The surgery was like an hour and a half, and then she was in the ICU for a little while. When she woke up she was actually in pretty good shape, she actually walked around the ICU by the evening time.

 – Catharine, mother of Willow, age 8, Long QT Syndrome

She was around 18 months when she got her second pacemaker. We had noticed that she seemed lethargic, and so we went in and they just were like, “She’s outgrown this pacemaker.” But the second surgery was not open heart, they were able to put the pacemaker up in her shoulder and have the leads go intravenous, so actually they took out the old pacemaker that was in her stomach, but the leads are still there from the first one. Because they said “if we don’t have to do open heart, then let’s not.”

I don’t think she has any idea about that first part of her life or that she had a pacemaker before this one. She was still young enough. She knew we had to go to appointments, but now she’s like, “Oh, I’m going to have another surgery, what does that involve?” Now she’s asking questions she wasn’t for that second surgery. But we had a party when she came home had cupcakes and celebrated her making it. But you know, they give you toys, like, they gave her a little stuffed animal and I spent the night with her on that surgery. And the surgeon, I mean you would’ve thought she was getting a cavity filled, he was really nice. I mean, that’s all he does is place pacemakers, you know? He was like “It was routine, she did great!”

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker