Ryan, born in Jamaica with complex congenital heart disease, struggled to breathe almost since the day he was born. “I remember when I was 4 or 5 years old that I couldn’t walk from one room to the next. I would have to fall to the floor to catch my breath.”
Unknown to his family at the time, Ryan had Tetralogy of Fallot and pulmonary atresia, congenital heart disorders that left him without critical connections between his heart and lungs.
“In layman’s terms, the heart and lungs are connected with a tube that’s shaped like the letter ‘T’,” says Andrew Fiore, MD, director of cardiothoracic surgery at SSM Health Cardinal Glennon. “At the base of the ‘T’ there is a valve. Ryan had no pulmonary valve, no straight part of the ‘T’ and no side parts of the ‘T’. His heart was basically disconnected from his lungs.”
Amazingly, Ryan’s body adapted as much as it could to get small amounts of oxygenated blood from his aorta into the lungs. Tiny peripheral branches of blood vessels grew from the aorta as substitutes for the lung arteries, much like a tree develops small branches. They reached out into the lungs to carry blood and oxygen. “Ryan had hundreds of these tiny blood vessels that were each maybe only one or two millimeters in size, but they kept him alive for his first five years,” explains Dr. Fiore.
Ryan’s mother traveled for miles in Jamaica seeking help. She even made a plea on television for someone to take care of her son. Through her efforts, words about Ryan’s condition reached the St. Louis based-World Pediatric Project, which contacted SSM Health Cardinal Glennon, one of its largest partners in providing care for needy children from developing countries. When the heart team in the Dallas Heart Center gave the go-ahead, Ryan was flown to St. Louis.
“He was a tiny, tiny 5-year-old who was suffering from such a lack of oxygen that his skin and lips were blue and the whites of his eyes weren’t white, but grey,” says Julie Keeley, Ryan’s host mom in St. Louis. “He came off the plane looking so very sick, but from the moment we met him, we felt connected. It was love at first sight.”
Within days of arrival, Ryan suffered a significant stroke and was immediately placed in the hospital’s intensive care unit. As soon as he recovered from that, the heart team went into action.
“In the United States, his condition would have been diagnosed soon after birth or even during a fetal ultrasound,” says M. Babak Rahimi, MD, one of Ryan’s pediatric cardiologists. “This typically would have been fixed in the first few months of life, but in Ryan’s case, living in Jamaica, he didn’t have that chance.”
A comprehensive medical evaluation in the Dallas Heart Center and a series of diagnostic tests visibly showed surgeons the extent of Ryan’s missing heart components. Says Dr. Fiore, “He was really cyanotic because of his lack of oxygen. We see cases like this regularly in the Dallas Heart Center, but not to the degree that Ryan had. If left untreated, Ryan would have a life-threatening complication as he had with his stroke and eventually, his heart would have failed.”
With decades of expertise in complex heart reconstruction, however, the heart team decided upon a series of procedures to get Ryan’s heart functioning in a more normal way. Surgeons first had to improve blood flow to the lungs so that he could receive more oxygen and stimulate growth of his pulmonary arteries. They did that by inserting an artifical heart shunt, or bypass tube, to take the place of non-existent pumonary arteries.
Says Dr. Fiore, “The Tubes are about the size of a pencil and made from Gore-Tex. We placed one to the right and left lung over the course of several weeks. Once we created a good source of blood flow, it stimulated Ryan’s body to grow larger blood vessels which we then could use as his pulmonary arteries. In other words, we made bigger branches grow to replace the tiny branches that Ryan’s body initially formed.”
With more oxygen flowing through his body, Ryan changed right before Keeley’s eyes. “He went from being blue, like grey blue, to having pink lips and gums, and his eyes were white again,” she recalls. “His fingers, which had clubbed and turned under as a result of his condition, were beautiful. He kept looking at them and saying to us, ‘Look how normal my hands are! And my toes — I’ve got beautiful toes!’ He was so proud of that.”
With the shunts in place and his condition stabilizing, Ryan was sent home to Jamaica. It took about a year for the blood vessels to grow to a suitable size. A year later, Ryan returned to the Dallas Heart Center. Surgeons closed holes in both the upper and lower pumping chambers of the heart and created an artificial ‘T’ and pulmonary valve to reconnect the heart and lungs.
“We actually separated the blue blood on the right from the red blood on the left side of Ryan’s heart,” says Dr. Fiore. “His heart now basically functions with every beat much the same way a normal heart does except that Ryan has artificial material in his heart that doesn’t grow, namely the pulmonary valve and the ‘T’ piece to connect the heart to both lungs. As Ryan grows and gets bigger, we’ll have to go back and replace these with a larger valve and ‘T’ piece.”
Over the course of five years, Ryan underwent three open heart surgeries and numerous other cardiac procedures. Each time, he stayed with Julie, her husband, and her three sons. They have become his second family.
“The Keeley’s are a great family!” he says. “I started calling them mom and dad when I was about 6 years old. They treat me like family. I feel really comfortable and happy around them. Also, I have three (host) brothers here and they show me how to do things and I learn from them and they learn from me, like how to play cricket.”
In Jamaica, Ryan is finally able to play with his siblings, too. “I can play soccer and cricket with them there and here I Can play basketball and football. I can also swim and go biking,” he says. “Anything I want to do, I can, because I can breathe better.”
Ryan now has plans to go to college in the next several years and make a home of his own here in the United States. “That’s one of the joys of my job to see kids get better and hear them plan for their future,” says Dr. Rahimi. “Ryan was extremely sick when he came here and he had a very rough time after surgery. But he recovered beautifully. Now, when you look at him, he’s just this wonderful young man. You would never know he had such major heart disease.”
Dr. Fiore agrees. “Pediatric cardiac surgery is truly a team effort and we have a great team at Cardinal Glennon Children’s Hospital that’s been together a long time,” he says. “We want to give these kids a second shot at life. We want to get them out of grade school and see them enter college, get married and enjoying life to the fullest. That’s the payoff in congenital heart surgery. And the payoff is extremely rewarding for everyone.”
“Ryan is truly a miracle and such a gift,” says Keeley. “Each visit, each stage has been so much fun to be a part of and such a gift for us to be along on this ride with him. He is such an exquisite young man and I think he realizes himself that he has been given a gift. If he had stayed in Jamaica six more days, he wouldn’t be here.”
She adds, “His mother had such courage to send him alone to another country to get well. I’m amazed at her strengh and Ryan’s. We’ve talked about this several times and she knows that I’m going to love him enough until he gets back home to see her.”
Asked if God had a hand in his coming to St. Louis, Ryan looks up and says, “Well, that’s the most important part. He saved my life. If I stayed in Jamaica, I would be dead right now. The equipment they had there couldn’t help me at all, so I think God really helped me to get a family here so that I could come to this hospital and get better.”
Keely looks at Ryan with tears of joy in her eyes. “When Ryan and I first came to the Dallas Heart Center, we immediately felt at peace and we know we were in the finest hands,” she says with emotion. “We knew that if anyone could save Ryan, this was the place. We felt like God was there and miracles were happening. Certainly, miracles happened with Ryan.”