My daughters have a life-threatening condition and on most days, I’m not worried.
Should I be worried?
My sister, Christie, died suddenly when she was 24 years old. So, you’d think I would be even more worried about my kids, right?
I feel safe, and I feel that my daughters, Cora (3) and Kate (1) are safe. We are protected because we have been diagnosed and are treated with medication that significantly lowers the chance of the heart going into a dangerous arrhythmia. My sister was not diagnosed, she was not treated, nor was she careful. Why would she be? But, we are.
I have convinced myself that we are all safe, and that thought has been the source of significant comfort since my diagnosis more than ten years ago. It kept me sane when at 26 weeks pregnant for both girls I found out they were also affected by Long QT.
Then, last week, I began to worry.
“Especially because you have two kids with Long QT, an AED would not be overkill. Unfortunately, the first episode could come with no warning sign.” This was the pediatric cardiologist’s response when I asked about purchasing an Automated External Defibrillator (AED) to leave at the preschool Cora and Kate will be starting in the fall.
Many Long QT parents carry AEDs for their children. When that thought has crept up on me in the past I have dismissed it, determined that my kids would not be petrified to live their lives. I couldn’t imagine having my little Cora carrying a defibrillator with her for her very first sleepover. I do not want her living in a bubble. She rides in a car after all, even though automobile accidents are among the leading causes of death for kids.
Still, maybe it’s the thought of fire drills, and medication being dispensed by their teachers and not by me, but I think my most recent visit with the pediatric cardiologist sold me on an AED. Just one, to leave at the school. Baby steps.