A repair for Charleston’s complex heart

Trey and Jandie Steele both work in medical device sales. They have spent lots of time in hospital operating rooms and are comfortable discussing complex medical procedures with doctors and surgeons. And yet, when their second child, Charleston, was diagnosed with a number of congenital heart defects one week after her birth, they felt blindsided and unprepared. 

“We had no idea anything was wrong for the first few days,” says Jandie. “Then she started having trouble eating and we took her to the pediatrician.” They initially thought it was gas, but when the trouble persisted, Jandie and Trey took her to the emergency room at the children’s hospital near their home in Ohio. There, they learned Charleston’s heartbeat was erratic and she was admitted right away.

“We were in the intensive care unit for a week,” says Jandie. It was there they learned Charleston had a hypoplastic aortic arch, a hypoplastic aortic valve, an atrial septal defect, and a large ventricular septal defect. “When the doctors told us she needed surgery right away, we were so overwhelmed, we went ahead and had the surgery there.”

Researching other options

Although the surgery went well, Charleston would need more surgeries to correct her heart.

“That’s when we started looking at other hospitals,” says Trey. “Her valve was the point of major concern for us. We knew an undersized valve could change her long-term prognosis and lead to future surgeries, so we wanted to find the hospital that was the most experienced in her condition.”

After some research, they booked Charleston’s second surgery at a children’s hospital a few hours from their home. But they had a nagging feeling they might be able to do better. “We learned the surgeon there only did five aortic arch repairs a year, and we thought we might be able to find someone with more experience,” says Trey. “We knew that while any hospital might be capable of performing her surgery, we wanted to choose the place that had the most experience in performing that surgery.”

They were also hoping Charleston might be able to have surgery that would give her biventricular circulation. This would mean she would have two working ventricles (pumping chambers in the heart) instead of only one and would not need a conduit placed in her heart that would have to be replaced every few years. “We knew we were asking a lot, but we wanted to give Charleston every opportunity to have a ‘normal’ heart and a normal life,” says Trey.

As they continued their research online, they discovered Facebook groups for parents of kids with heart conditions. When they started to delve deeper into which surgeons were recommended for the type of complex heart surgery Charleston needed, one name kept coming up: Dr. Christopher Baird at Boston Children’s Hospital.

A second opinion leads them to Boston

Just weeks before Charleston’s surgery was scheduled, they decided to reach out to Dr. Baird for a second opinion. “We had a 30-minute call with Dr. Baird and decided on the spot to have him perform Charleston’s surgery,” says Trey. “He was so knowledgeable and articulate. His whole demeanor put us at ease.”

But they weren’t sure how they would get to Boston — it was March of 2020, and COVID-19 was starting to become a concern. “We finally decided to drive from our home in Ohio to Boston, not wanting to risk a flight at that time,” says Jandie.

Making the right choice

Trey says from the moment they arrived at Boston Children’s they felt confident they had made the right decision.

“The other hospitals had been good, but our experience at Boston Children’s went above and beyond,” says Trey. “Throughout her surgery and recovery, we felt like everyone on the team was focused on making sure Charleston had the best outcome possible.”

Throughout the complex 12-hour surgery, they received regular updates from anesthesiologist, Dr. Paul Hickey. “He walked us to an area of the waiting room and said, ‘Charleston is going to be 50 feet from where we sit now. I can’t get you any closer,’” says Trey. “He was such a caring individual with a steady, calming way about him.”

When the surgery was complete, they were overjoyed with the outcome. Not only was Dr. Baird able to repair Charleston’s aortic arch, but he was also able to give her the biventricular circulation her parents had hoped for.

They were equally pleased with Charleston’s care after surgery. “Mags (Margaret Adamcheck), our nurse in intensive care, was focused on doing everything she could to help Charleston recover quickly so we could get home,” says Trey. “Mags comforted and soothed Charleston for hours on end with us, to help keep her calm so Charleston wouldn’t need additional narcotics. ”

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Charleston loves helping her dad with the vacuuming.

A happy toddler and a partnership in care

Now a happy 16-month-old, Charleston is doing great. She loves her big brother Tripp and vacuuming. “She has a small version of our vacuum, and she pulls it out every time she hears one of us start vacuuming,” says Jandie. “It’s hysterical.” But although she keeps a clean house, Jandie says she’s a very messy eater and “absolutely loves bananas and cookies.”

After a few telemedicine visits with Dr. Baird and his team in Boston, she’s getting her follow-up care closer to home.

“There’s a level of understanding and of partnership between our doctors here and our team in Boston,” says Trey. “Everyone at home has been very supportive about our surgery in Boston. And at the end of the day, you have to make the choices that are best for your child, even if that means traveling for care. While we’re comfortable having her regular workups here in Ohio, we will head back to Boston if she ever needs more surgery.”

Learn more about the Department of Cardiac Surgery and the Complex Biventricular Repair Program.