“Within nine months [our son] took out his g-tube and threw it away. He received an award in kindergarten for being the best eater. He would like to return to CHOC to show everyone how he is able to eat anything, even a hamburger.”
– William’s Family
William and his twin sister Kamryn are survivors – miracle babies born at 25 weeks and weighing approximately 1 pound 10 ounces. The twins spent their first months of life in a Colorado hospital while undergoing specialized medical care for micro-preemies. Today, the twins are almost 8 years old, and thriving like the rest of their peers. William, however, took a longer route in reaching age-appropriate milestones. He faced complex challenges that eventually landed him across several states at CHOC Children’s Hospital in Orange, California. This is the story of his journey…
After a premature birth, William spent seven months in a Colorado hospital to obtain care and help him overcome various health complications resulting from his prematurity. He underwent the Nissen fundoplication surgery to strengthen his esophagus and had a gastrostomy tube (G-tube) placed in his stomach to ensure he received his required nutrients. Eventually William became entirely dependent on G-tube feedings. During this time, he received extensive oral and physical therapy and, upon discharge from the hospital, was placed on a regular schedule for occupational and feeding therapy. But progress was very slow, according to his parents, Brian and Kristen. He only ate a few bites a day, and associated food with pain. By his 4th birthday he was skiing small slopes in Colorado but unable to eat like a normal child.
When William turned five, Brian and Kristen decided it was time to take drastic action to improve their son’s quality of life. They researched feeding programs across the nation, and were even willing to temporarily relocate if it meant getting their son the best possible treatment. Their long-term goal was to wean William off the G-tube and give him the opportunity to thrive and be normal.
They found the hospital-based, intensive feeding program they sought over 1,000 miles away at CHOC Children’s Hospital, where a multidisciplinary feeding team provides personalized, comprehensive therapeutic care to children with complex eating disorders. The team administered a health evaluation and found that William was 95 percent dependent on the G-tube to meet his nutritional needs. They accepted William and his parents into the three-week inpatient care program. They even helped the family arrange temporary residence at the Orange County Ronald McDonald House, a few blocks away from the hospital. With a comprehensive treatment plan in place, the life-changing experience for William and his family began.
William worked with the feeding team three times a day, five days a week. In between sessions, the family was able to practice the techniques and strategies learned in a supportive and comfortable environment. Part of the program’s mission is for families to learn the skills necessary to achieve long-term success after the inpatient program is complete. Brian said William enjoyed the one-on-one interaction he received. Through his customized therapy and behavioral plan, his motivation to eat food increased daily. By the time he completed his program, William was only 35 percent dependent on his G-tube. Once settled back home, his parents applied the feeding skills learned to William’s feedings, continuing to build upon CHOC’s feeding program success. Within months, William was able to eat orally at 100 percent – he was off the G-tube for good! His parents credit CHOC’s intensive program that emphasizes family participation and training with real-life, applicable skills.
These days, William does not have to be prompted to eat. His favorite meals include cheeseburgers and ribs. The ultimate testament to his newfound love of food: He won an award given by his school for his ability to eat. William, now healthy and happy, became “The Best Eater” among his kindergarten classmates!
When his father Brian is asked about life without a g-tube he says, “William is just awesome! We still talk about each member of the feeding team, his experiences in the CHOC feeding program as well as our experiences with eating and the success we all have enjoyed!”