Emma: I feel like the doctors said I should probably get my procedure while I was younger for some reason, and… I forget. Mom, you can take it from here.

Mom: What ended up happening was that once we were on the beta blocker medication, the SVT episodes were infrequent, but then as she got older, they were happening more frequently. We struggled a little bit around the time when Emma was eligible for the ablation procedure, whether to do it or not. And that was a hard, like—why not just stay on the beta blocker medication forever? And are you sure she’s big enough for the equipment? And do you have to do it? The beta blockers are pretty safe, there’s obviously some risk with the procedure. Our doctor suggested doing it earlier- we waited maybe another year. She had hit the weight threshold, and we were both just like “She’s fine, the medication is easy.”

But then Emma had some anxiety and started seeing a social worker. We weren’t sure if the SVT was causing underlying anxiety, or again whether it’s just kind of general developmental anxiety, but eventually she was worrying about it happening a lot, and that’s when the doctor said that one of the ways we help families decide is that worry is actually not good for your health. The older Emma got, the more she understood the role that the heart plays in the body and how important it is.

Emma: Yeah, I remember in second grade- this got me really freaked out- we were learning about the body in health, and we started learning about the heart, and I was like “Oh dear.” And we were learning about how to be healthy and then we started learning what big role the heart has on your body and you can’t live without it, and I was like “Oh great, what does this have to do with SVT??”

Mom: One thing that would have been helpful to me as a parent would have been talking to other parents, like how did you finally make that calculation, that decision, on when to do it?

 – Emma, age 9, and her mother, SVT

 

When we came here, we saw Dr. Newburger, and she told us the options that we had: either stay inactive on medications, or have surgery done to fix it, and we decided to have the surgery done. She explained the process briefly about what was going to happen, and how it was, and precautions that they make, so we felt comfortable about that, and we talked to a surgeon and he said that he could do the surgery.

I was in the hospital about nine days. Originally I was supposed to be leaving three days after I got out of the ICU, but then I got set back because they thought that it failed. But it hadn’t. So I just had to stay a little longer so they could make sure that I was all set.

 – James, age 20, Anomalous Coronary Artery