Kindergarten Sophia Schilpp came home from school clutching her temples. Her head was pounding and the pain made her vomit. She cuddled up on the couch with her favorite pineapple blanket, an ice pack over her head.
Her mother, Shannon, thought it was a migraine, like the ones she often had. The next day, she took her “Sophie-Ours” to the doctor. He noticed Sophia’s low heart rate and that her chart showed that it had been well below average on her last visits.
“I will never forget seeing her next to me as happy as she could be and trying not to show her how scared I was,” Shannon said. Sophia was born healthy and rarely fell ill. Although she’s often tired after playing, Shannon and her husband, Jeff, of Redmond, Oregon, assumed that was just who she was.
The pediatrician referred the family to a cardiologist. On the date, lithe and athletic Sophia smiled and danced around the room. The doctor hooked her up to an EKG machine which showed she had a condition called heart block.
Heart block is a heart rhythm disorder. It happens when the electrical signal that controls the heartbeat is partially or completely blocked. Range is measured in three degrees, from lightest to deepest.
The doctor gave Sophia a special monitor to wear for a few weeks to determine her degree. The device was irritating and uncomfortable, and Sophia tolerated it for three days.
Two weeks later, Shannon was about to pick her up from school when the cardiologist called with the results. She stopped on the side of the road.
Sophia had nearly complete third-degree heart block. This helped explain why she grew increasingly sleepy and grumpy after school. An echocardiogram showed no structural problems, rare for people with heart block.
“His heart was doing everything it could to give him enough energy,” Shannon said.
She immediately called Jeff. “I thought to myself, ‘How could this have happened to us? And what is life like for her in the future?'” he said.
Still processing the doctor’s information, Shannon stopped at school and watched Sophia in the queue, spinning and jumping with her friends.
“I was like, ‘That can’t be true. This is my child and she looks perfectly healthy,'” Shannon said.
The cardiologist referred the family to a pediatric cardiologist three hours away in Portland who specializes in electrical heart problems. On Zoom, the new doctor said Sophia needed a pacemaker. They scheduled surgery for the following week, less than a year after she went to the doctor with a terrible headache.
Shannon and Jeff found cartoons that explained the surgery. “His most prevalent question was, ‘Is this going to hurt? “,” Shannon said, “and I was hoping not.”
The hotel in Portland felt like a vacation for Sophia. She was captivated by a tram ride from the hospital parking lot to the facility.
“She found places in this really scary event to enjoy it and treat it like an adventure,” Shannon said.
The operation lasted two hours. Three days later, she returned home.
Sophia was up and about a week after the operation, but stayed home for six weeks. She went back to school for half days at first.
Before Sophia returned, her teacher set up a Zoom meeting so the girl could show her classmates her incision. It was important for everyone to understand that they had to be more careful around Sophia, as rough play could move the small pacemaker wires.
“I wasn’t totally sure if she was ready to come back, and I didn’t want to push her,” Shannon said. “But after that first week, she wanted to stay all day. She had the energy of any other 5-year-old.”
Now powered by the device she sometimes calls her “generator”, 6-year-old Sophia has more energy than ever. She does ballet and loves to dance and sing and do cartwheels and somersaults. Although she will eventually need a new pacemaker, it probably won’t be until she’s 10.
“She’s happy, healthy and really enjoying life,” Jeff said.
While some parents of children with pacemakers let them participate in contact sports, Shannon thinks it’s too risky. Sophia probably won’t be an Olympian or a professional basketball player, “but there are things she can participate in.”
There are other concerns, from fear that she will be teased about her scar to technological issues. Due to possible interference with her device, Sophia cannot have a tablet within six inches of her abdomen.
“I just hope that as a young adult she’s surrounded by people who really understand her and don’t make her feel different or weird,” Shannon said.
Shannon has found solace in online groups of parents whose children have similar conditions. One story stood out – a 25-year-old man in excellent health with a case similar to Sophia’s.
“There’s a sense of safety in a community like this,” Shannon said. “When your mind wanders, you can get back to the facts.”
The family is also focused on gratitude, she said. “We’re trying to stay in the present and be really… grateful for every step that’s been taken to get us to the point where his heart is now safe.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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