Just Pacing It: Living with a Pacemaker-Dependent 2 Year-Old

This afternoon I finally pulled out the Medtronic device that the hospital staff had given us just over a year ago after Asher’s second open heart surgery. He was just a few months shy of his 2nd birthday, and needed to get a sub-aortic membrane removed. It was intended to be a quick and easy fix, but the morning of we were informed by the surgeon that there were several other concerns that had developed in his heart. Long story short, Asher was in the operating room for roughly 12 hours and ended up with complete heart block, which required him to receive a pacemaker a few days later.

I remember having seen pacemaker scars on individuals when I was a lifeguard in high school. They’d usually be on the chest up near the right shoulder. But for someone as small as Asher, the only possible spot to place it was on the right side of his belly. While that hasn’t seemed to bother him a bit, I cringe each time I see him dragging his belly over couches, beds, and other furniture that he’s grown fond of climbing.  The fact that Asher is super skinny makes it all the more difficult to see such a bulky device sticking out of his belly. Due to some other issues with his heart, they ended up having to replace his pacemaker a few months later with an even bulkier one, so now it REALLY sticks out!
When they first placed Asher’s pacemaker in him, we were told that the top half of his heart would still be in charge and setting the pace – and that the pacemaker would essentially be there to follow commands. This was great news, because it meant that there would be no extra danger in Asher getting his heart rate up by doing the activities that others in his age group do. Yet, while his heart rate itself wasn’t anything that we needed to be concerned about, you can bet we were filled in on some of the other limitations Asher would have, especially in regards to physical activities.
Obviously, having a pacemaker makes contact sports quite risky. Add to that the fact that Asher requires blood thinners (due to a mechanical heart valve), which amplifies all bruising and bleeding, and such sports like Football or Rugby become extremely dangerous for him. To be honest, my wife and I were both swimmers in high school, and have been hopeful that perhaps our kids would come to enjoy the sport as much as we had. And, of course, there are plenty of other athletic activities he can participate in if he tends to lean another direction.
We were also told that we needed to be careful around magnets. We had some Mickey Mouse refrigerator magnets for the kids before his operation, which, according to the doctors, was not a big concern, but we did remember that we had some pretty strong magnets on the fridge that would have to be moved up out of reach. Magnets can interfere with his pacemaker, and his pacemaker can give him a slight shock if there is too much magnetic interference.
I’ll be honest though – beyond these few concerns and adjustments, his pacemaker hasn’t really given us much issue. Maybe that’s why I’ve waited so long to finally pull out the Medtronic scanner and transmit his pacemaker details to the doctors. I don’t know exactly what the future holds for our little CHD warrior. One thing I do know, however, is that all these operations, tests, and meds haven’t slowed him down a bit. Despite his reliance upon the battery-powered device in his belly, it’s clear that Asher is the true pace-maker. And for that, we have been truly blessed.

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