Recovery from complicated surgery shows teen has a whole lot of heart
Tracey and Tim Sheehan had run out of options for their son, Ryan, who was born with a complex set of heart defects. His great arteries came from the wrong sides of the heart, his lower chambers were switched, there was a hole between his ventricles and he had a bad mitral valve. He had already undergone three open-heart surgeries to save his life.
But in 2005 Ryan was so weak, he needed a wheelchair to get down the halls at school.
At that point, I couldnt stand to see him in a wheelchair anymore, Tim said. He and Tracey wanted their then-13-year-old to be healthier, and they were determined to get him the care he needed.
He was so weak and so small, Tracey said. He was always at the 5th percentile of height and weight.
Roger Vermilion, M.D., chief of Pediatric Cardiology at Golisano Childrens Hospital and Ryans cardiologist, felt it was time for another heart surgery. Ryans previous two surgeries in 1994 and 1999 were performed at The Cleveland Clinic because at the time Rochester didnt have a surgeon who could do the complicated surgeries Ryan needed. The family wanted to return to Cleveland again for this latest surgery.
But Cleveland wouldnt touch him, Tim said. They thought he could wait another year or two.
Ryans parents and Dr. Vermilion didnt think Ryan had that long to wait. So they turned to the new pediatric cardiac surgeon at Golisano Childrens Hospital at the University of Rochester Medical Center, who agreed Ryan needed surgery as soon as possible.
Ryans set of defects and extensive surgical history are rare, so it was difficult for George Alfieris, M.D., chief of pediatric cardiac surgery, to give the family an exact idea of how the surgery would go. He told the family it was risky and there was a 30 percent chance Ryan wouldnt make it off the operating table.
I operate on hundreds of kids every year, and Ryans heart was the most complicated one Id ever seen. And he was very sick, Alfieris said. It was hard to know how he would do.
Alfieris had to cut through and clear a lot of scar tissue from the three previous surgeries to get to Ryans heart. Once inside, Alfieris repaired Ryans leaking and hardened tricuspid valve that had been making him so sick. He also relieved the heart of some of its burden by performing a bidirectional Glenn shunt procedure, which routes the blood from the upper body past the heart, directly to the lungs for oxygenation. Now his already weak heart had a little less work.
Knowing how difficult it would be to place a pacemakers leads into Ryans heart later because of his complicated arteries, Alfieris and his team did it while they had access. Children like Ryan are at increased risk for developing arrhythmias later in life, but most are able to have them placed years later without open-heart surgery.
Ryans recovery was not quick. He weighed just 60 pounds when he went home two months later. He was so sick going in and the surgery was so complicated, it took months for Ryan to even catch up to where he was before the surgery. It was very disappointing for Ryan.
Alfieris knew Ryan needed some inspiration to get over the hump in his recovery. He told Ryan that if he could gain another 20 pounds, he would take him for a flight in his airplane. It took a few months, but he did it, and Ryan said the goal of taking that flight with his surgeon helped him focus on getting better.
Alfieris was true to his word and took Ryan up in his Grumman Yankee airplane, nicknamed Herbie. They flew out over Sodus Bay and over Lake Ontario. Ryan said the planes cockpit was surrounded in windows and gave him a view hed never seen before.
It was surreal. It was awesome, Ryan said.
Vermilion said its been amazing to see the change in Ryan. He has grown to 5-foot-10-inches and weighs 100 pounds more than he did the day he was discharged. He got the surgery exactly when he needed it, Vermilion said. Hes a model for other children with heart defects.
Hes one of the new generation of kids who wouldve died 15 years ago without these surgeries, Tracey said. We dont know whats in store for him. He could have an arrhythmia or his right ventricle could get enlarged and at that point, itd be a heart transplant.
But after several points when the family prepared to lose Ryan rushing Ryans baptism when he was first diagnosed and once involving a counselor to help his older brother, Tim, deal with Ryans impending death his parents, Vermilion and Alfieris were delighted to see him graduate last June and go off to college last fall.
We never thought hed be able to go away to school, Tracey said. In fact, Ryan said he didnt think hed be able to either, but in his first semester, he earned a 3.92 grade point average.
Dr. Alfieris changed everything. He was able to help me, Ryan said. And it wasnt like he did the surgery and went on to another patient. He stuck with me and helped me get better after the surgery. He even showed up to my graduation party.
Alfieris doesnt hesitate when he talks about Ryan: He is a miracle. The biggest miracle of my career.
Provided by University of Rochester Medical Center
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