For Oliver, a stay at Phoenix Children’s means it’s Hot Wheels time. When he was at the hospital last summer for open-heart surgery, he and his parents turned his room into a racing paradise, using as much of the space as they could to build ramps, loops and jumps. It was a stressful situation, but the hospital’s Child Life staff turned it into playtime – which was perfect for a 6-year-old.
“I always feel really comfortable at Phoenix Children’s because I know Oliver’s providers are monitoring him and making sure he’s ready for whatever is next,” shared Leila.
Oliver has received that level of care since before he was born.
A congenital heart defect
When Leila was pregnant with Oliver, she learned at her 20-week anatomy ultrasound that he had a rare heart defect called Ebstein anomaly. With this condition, the heart’s tricuspid valve is in the wrong position and its flaps are not formed correctly. As a result, blood might leak back through the valve, making the heart work less efficiently and possibly leading to an enlarged heart and heart failure.
“Because Ebstein anomaly is so rare, there aren’t many doctors who know how to treat it,” Leila noted. “Phoenix Children’s is one of the only hospitals that can treat all aspects of it.”
When Oliver was born at a hospital in Phoenix, it wasn’t immediately apparent that there was anything wrong with him. As his mother put it, he was “pink and screaming,” but the room was still full of caregivers who were prepared to give him whatever he needed. He stayed in the neonatal intensive care unit for about four days.
For more than five years, Oliver lived his life just like many other boys his age – hard and fast. He broke a leg while jumping on a trampoline and broke an arm on the monkey bars. At one point, he dislodged the microchip in his temporary heart monitor because he wanted to see if he could hang upside down on the monkey bars while wearing it, Leila remembered. In short, he enjoyed living on the wild side.
Throughout it all, Oliver underwent at least two echocardiograms (or echos) each year and faithfully saw cardiologist Robert Puntel, MD, for regular checkups. “He didn’t have any symptoms during that time,” recalled Leila. “But if you looked at his echos, his heart was definitely getting big.”
The best solution
By the time Oliver was 6, his doctors at Phoenix Children’s decided he was ready for surgery to fix his valve. His heart has gotten so big that they wanted to remedy the problem before it became dangerous.
Dr. Puntel talked to Phoenix Children’s heart surgeon Daniel Velez, MD, who had received special training to perform a procedure called cone reconstruction. During this operation, the surgeon moves the valve to the correct position, rather than replacing it with a valve from a donor. Because the patient is able to keep their own valve, it grows with them, minimizing some of the complications other patients have experienced with similar procedures.
Oliver’s surgery was in June 2022. Before the operation, the Child Life staff members made sure he was prepared for what was coming by giving him a picture book about his procedure and a play mask. By the time he was wheeled into his pre-operation room, Oliver was ready.
His parents, however, weren’t quite as ready. Leila and her husband, Christopher, decided they didn’t want to stay in the waiting room because Leila knew she would be anxious around all the other families. So instead, they sat in the cafeteria, and Oliver’s caregivers kept them updated with text messages.
“I was very stressed,” Leila shared. “It was open-heart surgery! They were going to stop his heart and put him on bypass!”
After an eight-hour surgery, Oliver’s valve was officially repaired – and he was on the road to recovery. As a registered nurse herself, Leila was especially anxious while she was sitting at Oliver’s bedside. Still, she felt comforted by the care he was receiving. “All of the nurses were amazing,” she recalled. “They made sure that he got up and walked two or three times a day. And when his doctor wanted him to exercise his arms more, the Child Life staff brought him LEGOs.”
After six days in the hospital, Oliver went home. He was in a lot of pain his first week out of the hospital, and his parents called the on-call cardiologist on the Fourth of July. At the time, the medication he needed was in short supply, so the cardiologist called three different pharmacies until he could find one that had the medication in stock. Oliver had the pain relief he needed within an hour.
Looking forward to camp
Now, eight months after his operation, Oliver still proudly tells others about his heart surgery and shows them his “zipper,” which is what he calls the scar on his chest.
His experience with the Phoenix Children’s Center for Heart Care is far from over: During a December 2022 examination, Dr. Puntel found a tiny hole around Oliver’s ventricles. He doesn’t need an additional surgery right now, Dr. Velez told his parents after an evaluation, but he will be watching Oliver carefully.
Still, Leila just signed him up for a five-day sleepaway camp that’s especially for children who have congenital heart disease. The doctors and nurses at the camp make sure the children have the care they need, while also having fun.
“Oliver is a kid who loves to be active, and his surgery helped him continue to stay healthy,” Leila stated. “We’re so grateful for everything Phoenix Children’s has done for us.”