According to Ryen’s parents Amanda and Clint, when Ryen was just a few days old he was diagnosed with Hypoplastic Left Heart Syndrome, a severe congenital heart defect in which the left side of the heart is too small to effectively pump blood to the body.

Within days, Ryen underwent the first of three surgeries to correct the defect in his heart. To keep him nourished, doctors inserted a nasogastric tube, or NG-tube, through his nose and down his throat. Some children tolerate an NG-tube well; others do not. Unfortunately for Ryen, in his case it was the latter.

“The NG-tube was really difficult to manage; it caused Ryen’s gag reflex to be so strong he would throw up, and when he threw up, the entire NG-tube came up with it. Then Amanda and I would have to put it back in ourselves. Soon after Ryen underwent his second surgery at four months, doctors removed the NG-tube and inserted a gastric feeding tube (G-tube) instead,” Clint recalls.

“The G-tube worked fine for a few years, but we knew we had to wean Ryen off of it. We tried group therapy, one-on-one therapy, and working with Ryen ourselves. At this point, he basically associated food with pure fear,” Clint explains.

“Then, my wife Amanda found out about the inpatient Feeding Program at Children’s Hospital of Orange County (CHOC). At that time, Ryen was occasionally sticking food in his mouth and sucking on it. The only time he would actually eat anything was if it dissolved in his mouth, like a Teddy Graham,” Clint says.

Last summer, Ryen, along with his father, was admitted to CHOC as part of a three-week inpatient feeding program designed to wean him off his G-tube and teach him how to eat. During Ryen’s stay, he was closely watched by the CHOC Feeding team, who slowly decreased his tube feedings. Even on his first night in the hospital, Ryen’s daily formula was cut from 32 ounces to just 10. The objective was to get Ryen to eat 1,200 calories by mouth each day.

During treatment, Ryen had a tight schedule to meet, beginning with a daily weigh-in at 7:30 a.m. According to Amanda, “we would throw our breakfast into a little red wagon and head down to therapy, where we would work with the feeding team on breakfast.”

As part of his therapy, Ryen was presented with several items designed to encourage good eating habits, including a timer to show him how much time he had left to eat, a chart to place the stickers he was awarded for the bites he ate, and juice or milk to help supplement his calorie intake. By the end of his inpatient therapy, Ryen was eating solid food. “The progress Ryen made was tremendous, but we still have to motivate him to eat,” Clint explains. “When most of us are hungry, our body tells us to eat. With Ryen, he has a few bites and he’s done; he is not naturally motivated to keep eating.”

Today, Ryen is completely off of his G-tube. “This is a day we were beginning to think would never happen,” Amanda says. “Ryen still has a long way to go to be eating like every other kid, but it’s amazing to think that last year he was completely dependent on his feeding tube.”

“We owe a special thanks to the Feeding team at CHOC,” Amanda says. “Without them, Ryen would still be struggling to take a bite, and we would still be mixing formula every few days, wondering how Ryen would ever make it through school on a G-tube.”