Heart Defects

My 9 month old daughter has just recently had a pacemaker "installed." I am wondering if there are any parents out there with child/ren who have pacemakers and what life is like with them? Are you constantly worried about it being bumped? How rough do your kid/s play?

I am looking to find out what pacemaker life has in store for me.

Cheers.

It's continually amazing to me how routine it now is to implant pacemakers in infants! When I got my first pacer I was eight years old and that was a pretty radical thing to do to someone so young. Then again, that was almost thirty years ago. We've come a long way.

Anyway, as to your specific question - it's not a great idea to have it be bumped, but it's also probably more resilient than you think. For myself, I've had a broken wire as the result of a car accident; there were no injuries in the accident but the seatbelt caught HARD and bent the wire a bit. A few months later there was a microfracture in the wire (from normal movement, kind of like bending a coat hangar over and over again until it finally cracks) and the lead needed to be replaced. Now I put the seatbelt under my arm instead of over my shoulder, should I sit on that side of the car.

Still, please keep in mind that this sort of thing is a statistical anomaly. The great majority of people (and even roughhousing children) with pacers will NEVER have a problem. When I was a kid I was pretty careful of it, but that had way more to do with my nature than with the pacer itself. I just didn't like sports, and didn't play rough.

When I made my book (My Heart vs. the Real World) I met many kids who had pacemakers. One of them in particular, Mario, was astonishing to me in just how rambunctious and kid-like he actually was. I mean, it never occurred to me as a kid that I could do that! He skateboarded, did jumps, got a brown belt in karate and wrestled with his buddies. He was bouncing off the walls all the time, never at a loss for energy and never had a problem.

So I think it's very specific to the personality of each individual child. For myself it's something I'm always aware of, though in the back of my mind, mostly. So I'm careful. While your doctor will be able to advise you as to the best things to do and not do, be sure to listen to your kid's nature and proclivities and personality.

NOBODY would ever know there was anything wrong with me (or Mario for that matter!) unless I told them or they saw the scars.

In my opinion it's vitally important not to let your kid be defined solely by the CHD. It's just a part of life. Be careful, but don't hide or coddle.

If you need anything at all please don't hesitate to ask.

(Thanks to Cheri for alerting me to this post, as well)

Best,