Seven-year-old Leighton Carnley loves playing ball with her two older brothers.
The whole Carnley family has spent time in the bullpen: Landon and Luke, both teenagers, have taught her everything they know about throwing and hitting a ball. Leighton’s mom, Candace, played softball as a child, too.
But Leighton has had to deal with something no one in her family has experienced. When she was 2 years old, her parents took her for a regular checkup with the pediatrician. She failed an eye exam, so the doctor sent her to a pediatric ophthalmologist.
“As soon as the doctor came into the room, he took one look at her and said that he thought that she may have Axenfeld-Rieger syndrome,” Candace said. The rare genetic disorder affects a person’s eyes, teeth, abdomen and heart.
The eye specialist recommended the Carnleys take Leighton to a cardiologist at Children’s Hospital of Richmond at VCU for an electrocardiogram.
“We weren’t sure what they were looking for,” Carnley said. “It was very scary.”
The test showed that Leighton had a small hole in her heart. The doctors planned to monitor it, hoping it would close over time.
“After the first year, I didn’t think I could wait a whole year to come back,” Candace said. “I would look at her and I would always put my hand on her heart.”
Each summer, the Carnleys, who live in Varina, visit the hospital to run Leighton through a variety of tests. This summer, the doctors at VCU told the Carnleys it was time to surgically repair her heart. They thought her chances of a full recovery were better at a young age.
That meant Leighton would be one of the first children treated in VCU Health’s new pediatric cardiac catheterization and electrophysiology lab, part of the downtown Children’s Tower upgrade that opened in April.
The new lab, the first of its kind in the region, focuses on treating patients as young as premature infants up to those in their early 20s.
“It’s a state-of-the-art room,” said Dr. Samuel Casella, the director of congenital interventional cardiology at the Children’s Hospital. “It enables us to do interventions for children with heart disease in a dedicated space for children.”
Because the team working in the specialized unit is focused on patients with cardiac abnormalities, it allows them to provide specialized interventions for children with heart conditions — even those that occur rarely.
“About 1% of children [are] born with any kind of heart disease, but it’s only about 1% of those that ever need to see a cardiologist,” Casella said. “You’re dealing with small numbers, and that means that you need to be in a place that’s experienced with seeing rare disease.”
Prior to the new unit opening, young patients were either treated in spaces meant for adults or sent to other facilities — sometimes out of state — for care.
The new technology allows doctors to use lower doses of radiation for procedures and combine multiple imaging techniques in the same examination.
Surgeons can simultaneously conduct an ultrasound while performing a catheterization in a patient. Doctors can also upload medical data into the system and use that additional information to improve how they perform cardiac procedures.
“I can use that like a roadmap,” Casella said. “So, I don’t have to be figuring out where I’m going in real time.”
Since the machinery is designed specifically for use with children, Casella said he’s able to get certain angles that he may not have been able to achieve in an adult lab.
“You’re in an environment that’s really just focused on that one problem and that one child,” he said.
The Carnleys were both excited and cautious about Leighton being one of the first children treated in the new unit. But Candace said VCU’s doctors reassured her “it was the right timing, and it was the right place to be.”
Casella repaired the hole in Leighton’s heart in July.
“He was glad that he actually went in and did it, because [the hole] was a little bit bigger than they anticipated,” Candace said. “I knew then that it was the right decision for us to go in and have the surgery done for sure.”
Leighton stayed in the hospital one night after her surgery and spent five days recovering at home before returning to regular activities. But since the surgery was minimally invasive, Candace said she has no scarring and is back to playing softball, taking dance classes and behaving like an average, active 7 year old.
“She’s been playing softball, she’s been playing with her cousins. She’s been doing everything since then,” she said. “She’s back to normal.”
