ASHER THOMAS WAS 3 days old when doctors cracked open his chest to run the wires from his pacemaker to the outside of his heart. He was born with a condition called heart block, a problem with the electrical system that controls heartbeats.
His heart rate had plunged to 39 beats per minute. On the morning of his surgery, his anxious parents, Robyn and Aaron, couldn’t see him awake.
“His heart rate dropped so low that they had to sedate him,” Aaron Thomas said. “That was the scariest part.”
Asher went home from the hospital after spending eight days in neonatal intensive care. The pronounced bulge extending from Asher’s abdomen is a reminder of the adult pacemaker that he will need for the rest of his life.
“Once you’re a cardiac patient, you’re always a cardiac patient,” said Robyn Thomas.
Every three months, Robyn and Aaron hook their son’s pacemaker up to a telephone line at their Eden Prairie home so that doctors can see if it’s working properly. That’s the easy part. They know that every few years, Asher’s pacemaker will need to be replaced. They know that the wires that attach the device to his heart — the leads — come with risks.
“Kids are just tougher on leads,” said Dr. Charles Gornick of the Minneapolis Heart Institute.
Leads are known to last 15 to 20 years, but sometimes they wear out sooner, requiring a complicated surgery to replace them. Even if no hiccups occur, Asher eventually will have the leads run through a vein to his heart, which is how they are placed in adults.
There also are long-term effects of needing an implantable device. No one really knows what a lifetime of pacing does to the human heart.
“These things are not developed for children,” said Carter, Asher’s doctor. “We’re still learning.”
Then there are other difficulties. It can be tough to program devices to accurately sense when a child’s heart is dangerously out of rhythm because kids have naturally higher heart rates. Children are also harder on devices because they don’t always rein in their physical activities.
“It’s always an ongoing negotiation with our younger patients,” Carter said.
Fortunately, Asher, now 2, is proving to be as energetic and rambunctious as any little boy. He was walking at 10 months. He clambers up and down the carpeted stairs of his family’s home. He plays with puzzles and the family dog. Visits to the neighborhood playground are frequent and tiring — for his parents.
“He’s into everything,” Robyn Thomas said of her son. “He’s just busy. He’s always been busy.”
That overflowing energy is translating into high expectations for their little boy.
“My hope for him is that he can pretty much do what 99 percent of what his friends can do,” Aaron Thomas said.
A push for pediatric devices