“You want a hospital with the best technology and the best nurses and doctors in the country. You expect that, and you expect it to be clean. Boston Children’s has all of that,” says Lisa Findlay, a mom from Hayden, Idaho.
“What made the difference was how much everyone loves these kids. Everyone who walked into Aaron’s room, from the surgeons to nurses’ aides to janitors and child life specialists, was on a mission to help Aaron.”
From the time he was born, Aaron encountered one medical challenge after another.
He was born with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect. By the time he was three years old, Aaron had undergone three surgeries, suffered a stroke and was diagnosed with Factor V Leiden, a blood clot disorder. The stroke left him confined to a wheelchair and caused cognitive impairment. Aaron also developed severe scoliosis.
By age 16, he was a veteran of children’s hospitals from Washington to Texas.
Scoliosis sparks a turning point
Despite everything, Aaron thrived. He grew to love four-wheeling, building model train layouts and cooking. Yet, adolescence brought his most serious challenge. His scoliosis progressed to the point where it was affecting his heart and lungs, which were already compromised because of Aaron’s heart condition.
He was in excruciating pain. He couldn’t attend school or do the activities that he loved. Even four-wheeling was too much for him because he couldn’t sit up.
His parents turned to a pediatric orthopedic surgeon at a regional hospital. “He told us Aaron wasn’t a candidate for surgery because of his blood clot disorder and heart defect. ‘Bring him home and keep him comfortable. There’s nothing else to be done.’”
Lisa wasn’t willing to accept that answer.
“With a special needs child, you hear a lot of can’ts. ‘Your daughter can’t join the school band. Your son is not eligible for a transplant,’” she says. “Aaron deserved every chance we could give him.”
So Lisa started researching options. She knew her son needed a great surgeon backed up by a strong team that understood children with complex conditions.
“There are lots of great children’s hospitals with strong intensive care units (ICUs). But many of them have an ICU that handles all of the kids, so nurses have just a bit of knowledge on each condition. We needed a hospital where nurses understood how serious the scoliosis surgery was for Aaron. He was going to lose a tremendous amount of blood, which would affect his heart.”
Glotzbecker invited the family to Boston for a consult. He gathered a team that included cardiology and hematology specialists to evaluate Aaron. “It was clear that they really considered whether or not they could help Aaron and save his life. They never pulled any punches and told us from the get-go that the surgery was very risky,” says Lisa.
The Findlays decided to proceed with the surgery. “We knew we were absolutely taking Aaron to the best place and the best doctors that we could find for him. And we weren’t disappointed.”
The 8-hour surgery to implant a pair of rods to straighten Aaron’s spine required Glotzbecker and co-orthopedic surgeon Daniel Hedequist, MD, to balance the teen’s multiple conditions. “We use two surgeons in challenging cases. Given his heart condition and clotting disorder, we had to maintain higher blood pressure and provide him plenty of fluids during the operation. This was beneficial for his heart, but increased the chance of bleeding,” says Glotzbecker.
After surgery, Aaron was transferred to the Cardiac ICU, where nurses had the specialized expertise to monitor his progress and stay ahead of potential complications.
Despite the severity of Aaron’s situation, there were times during his six-week hospital stay that he forgot where he was because he was having so much fun. “Aaron loved the visits from child life specialists and the clowns,” says Lisa.
That spirit of fun and a positive outlook can go a long way in recovery, says Glotzbecker. “Aaron has had many challenges in his life but has thrived because he has a positive family that cares deeply about him. From the moment I met Aaron’s family, they had a firm understanding of the severity of the situation as well as realistic goals and expectations. They remained upbeat, which really helped Aaron.”
The end result of the cross-country journey was just what the Findlays hoped for. “Aaron can get back to his life and do the things he loves again,” says Lisa.