Meet Ryan: The boy who grew his own esophagus

Dr. Rusty Jennings, Ryan Page, Dr. John Foker
Dr. Rusty Jennings, Ryan Page, Dr. John Foker

Eleven-year-old Ryan Page is a budding trombone player whose favorite foods include candy, popcorn and hot dogs. “Ryan loves any choking hazard,” jokes his mother Tracy.

When Ryan was born, few would have predicted he would be able tolerate these foods or master the trombone. “His doctors told us he had the longest gap they had ever seen in a baby with esophageal atresia,” recalls Tracy. Ryan was born with a nearly 4-inch gap between the top and bottom parts of his esophagus.

“This is a kid whose predestination based on standard therapy was chronic aspiration (breathing food, liquid or vomit into the airway), chronic lung disease and multiple operations throughout his life. Instead, he’s a normal kid. That’s the miracle of the Foker process,” says Dr. Rusty Jennings, director of Boston Children’s Hospital’s Esophageal Atresia Treatment Center.

When Tracy was six months pregnant with Ryan, specialists at Boston Children’s Advanced Fetal Care Center diagnosed him with VACTERL association, a hodge podge of birth defects, with esophageal atresia being the most serious condition. Doctors can’t tell whether a baby has short gap atresia, a relatively easy-to-treat condition, or long gap atresia until after birth.

The Pages took a wait-and-see approach to their unborn baby’s condition.

When Ryan was born, his gap was a doozy. Doctors inserted a G-tube to feed him because he couldn’t eat on his own, and they reviewed treatment options with his parents. But Tracy and her husband Michael weren’t satisfied with either of the standard treatments for long gap esophageal atresia.

Gastric pull-up surgery involves pulling the stomach into the chest for a makeshift connection. This puts the stomach in space the lungs should occupy, so kids have a hard time breathing and suffer from reflux and constant aspiration. Stomach acid flows into the esophagus, resulting in precancerous lesions.

The other option—colonic interposition—uses a piece of the colon to patch the esophagus. However, the surgery can’t be performed until the baby is walking, and because the colon continues to grow, the child requires repeat surgeries to re-size the colon. Patients wind up suffering chronic reflux and bad breath.

“Both procedures result in lifelong heartache,” says Jennings.

The Pages’ research led them to the Foker process.

Learning about the Foker process

Dr. John Foker had perfected a novel treatment for esophageal atresia that gradually grew an infant’s esophageal tissue. After the baby is put into a popscicle 031drug-induced coma, the surgeon places stitches on each end of the esophagus. The stitches are threaded onto buttons, which are turned regularly to increase tension and stimulate tissue growth until the two ends pass each other and can be attached surgically. Foker was the only surgeon in the world performing the procedure.

The couple discussed the treatment with Jennings, who readily worked with them to make the surgery possible—with one request. “If you go to Minnesota, can I go with you,” he asked.

Jennings had been following Foker’s career and was fascinated at the prospect of growing a baby’s own tissue. “I wanted to absorb as much as I could from him and bring the procedure to Boston.” Long gap esophageal atresia is rare, and because most surgeons only see one or two cases in their career, they rarely master treatment.

The Foker process: making the decision

The new parents decided the Foker process was Ryan’s best option. When Ryan was two months old and stable enough to travel, the young family set off for Minneapolis.

“We got to the hospital, and I panicked,” says Tracy. “I saw another baby in the middle of the procedure. He was paralyzed, and I thought ‘How can we do this to our baby.’ My husband reminded me we had made a commitment to this treatment. Then Dr. Jennings arrived, and I felt better. We had so much faith in him.”

Foker placed Ryan’s sutures, and Jennings absorbed as much as he could from Foker and the rest of the team at Fairview Hospital in Minneapolis. “I learned how to place and tighten the sutures and bring them together gradually. Dr. Foker practiced with a level of precision that comes from cardiac surgery. It took me a while to understand his approach. It isn’t based on training or literature. It’s based on the anatomy of the specific child. It’s a totally customized operation,” explains Jennings.

According to Jennings, Foker’s dual certification in pediatric surgery and cardiac surgery provided the ideal background to develop the procedure.

“We’re trained as pediatric surgeons to avoid difficult tissue, but cardiac surgery is all about difficult tissue. He taught me how to work with difficult tissue,” says Jennings.

The Page family spent nearly two months in Minneapolis. Tracy and Michael passed the time reading to their newborn son, nurturing a passion for books that continues today.

Jennings returned to Minneapolis to observe Ryan’s final procedure: “I was astonished. His lower esophagus had stretched from 3-4 millimeters to 4 inches.”

From G-tube to healthy

View More: http://lauraleigh.pass.us/pageRyan spent another 10 weeks recovering at Boston Children’s, and Tracy focused on helping her son learn to eat on his own. Because he had been fed by G-tube from birth, Ryan didn’t know how to eat. It took several months, but Ryan was eating on his own well before his first birthday. His G-tube was removed when he was 16 months old.

Though he had some physical delays after his surgeries, Ryan ultimately caught up to his peers. Today, he’s completely unaffected by his atresia. He sees Jennings and Foker once a year, giving the surgeons a chance to catch up with the boy who helped launch Boston Children’s Esophageal Atresia Treatment Center.

And Foker and Jennings have become quite a duo. Jennings mastered the Foker process and now treats four to six babies with long gap esophageal atresia every year. Foker is a visiting professor at Harvard Medical School and collaborates with Jennings to train surgeons at Boston Children’s and apply the techniques to other areas.

“We’ve extended the program into new areas that Foker never imagined,” says Jennings.

Watch this video to learn more about the Foker process.