AKRON, Ohio — At the Akron Children’s Hospital, one doctor has performed a surgery that could prevent patients with sinus node dysfunction from needing pacemakers moving forward.
Twins Gabe and Drew Wherley share more than their looks.
“Well, we’re twins, we’re going to be rare, but the problem we have I can’t even comprehend how rare it is,” said Gabe Wherley.
It all started for Gabe on the playground years ago when he passed out and had a seizure. Gabe was taken to Akron Children’s Hospital. While they were doing testing, he had another seizure.
“They know my heart has stopped and so I was diagnosed with sinus node dysfunction,” said Gabe.
At the age of 6, Gabe had a pacemaker put in and as he was recovering from surgery, his twin brother came to visit, then Drew passed out showing the same symptoms.
“I started to get dizzy, then I just passed out and had a seizure. The nurses came in they were rushing and that's when my parents knew that this could be a serious problem,” said Drew.
Dr. John Clark, a pediatric cardiologist and director of the arrhythmia center at Akron Children’s Hospital, tells News 5 that it's rare in children, pre-adolescent and 5 and 6-year-olds, to have sinus node dysfunction and in twins, it's almost unheard of.
“That is exceptionally rare. They are the only set of twins that I have who have sinus node dysfunction in identical twins,” said Dr. Clark.
The sinus node is the heart's normal pacemaker. At times, it can send the wrong signal to the heart leading to passing out or dizziness. When Drew and Gabe were diagnosed, there was only one treatment, a pacemaker.
“Every now and then, if the sinus node shuts off if it's not doing what it's doing, then the pacemaker will kick in until the heart beats for them,” said Dr. Clark.
So, at 6 years old, both boys had pacemakers living an out-of-the-ordinary childhood.
“Being kids with pacemakers. We obviously like couldn't play contact sports. We had to get homeschooled for a few years after the surgeries because those surgeries really put us behind socially and academically.
By high school, they had adjusted and headed off to college, then Dr. Clark called with a new procedure that he learned from a doctor in Brazil that could change things forever.
“We were amazed at this new technology, but also, we were faced with a little hesitancy,” said Gabe.
Dr. Clark says the 4-hour procedure known as cardio neural ablation had never been done in the state. It would affect the vagus nerve in the brain, which sends signals to the heart to slow down or, in patients with sinus node dysfunction, to stop.
“Where that nerve enters the heart is at very defined points in the heart. So, in the cath lab, we can find those points where that nerve enters the heart, and we can cauterize that area, and that modifies the heart's response to that nerve,” said Dr. Clark.
If it's successful overtime, pacemakers would no longer be needed and affect lives like the Wherley boys.
“It's mind-blowing because we have known pacemaker our whole life. We don't know anything other than a pacemaker. It’s hard to fathom,” said Gabe.
“We've been depending on our pacemakers our whole life. If we would get dizzy and pass, we've always had that sense, like, okay, our pacemakers got us, but it's going to be kind of like a mind shift,” said Drew.
The Wherley twins underwent the procedure in May and haven't had an issue since. Dr. Clark plans to turn the pacemakers off next summer, and if all is well, over the next few years, they could be removed.
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