Transforming Moments

Andrew’s Story

Traveling for Treatment

In June 2002, amid the bustle of a busy Cracker Barrel restaurant, April and Bruce and their children Rachel, 5, and Andrew, 3, sat down for dinner. It was a typical family moment, but a long time coming for this tight-knit Colorado family.

April had just picked up her husband and daughter from the airport in Baltimore, Md. She and Andrew had spent the last seven weeks at Richmond’s Children’s Hospital so that Andrew, who faced a series of medical issues that affected his ability to eat, could receive specialized treatment through the Children’s Feeding Program.

Bruce describes this family dinner as “so exciting and pleasing to see,” as it was the first time they could all celebrate just how far Andrew had come.

Andrew’s Story

Andrew was born with multiple symptoms of a yet undiagnosed syndrome. At 4 pounds, 6 ounces, he was small for a full-term baby but at first seemed to be progressing well. On the fifth day of his life, however, he developed necrotizing enterocolitis, a serious infection in his intestines. “From that day on,” remembers April, “everything just seemed to snowball.”

Within five weeks, a portion of Andrew’s intestines had been removed. He was also put on a ventilator and supplemental oxygen, which he would need for almost two years before his lungs were healthy enough for him to breathe on his own. At the same time, Andrew was experiencing severe congestion problems and the combination of these medical issues made taking a bottle nearly impossible: “It was so much effort getting that breath of air that when we started introducing the bottle, he would try to drink as he was trying to breathe,” says April. “It was excruciating to watch.”

Doctors soon discovered that when Andrew was able to swallow, he was experiencing severe and painful reflux in which the contents of his stomach were flowing back into his esophagus, often ending up in his lungs. Andrew underwent stomach surgery to prevent the reflux and as he recovered, he began to receive a portion of his nutrition through a gastrostomy tube surgically attached to his stomach.

Andrew had weekly feeding evaluations, but with continued congestion problems, he would turn blue when given a bottle. By his third month, he was so unstable that he became completely dependent upon the tube for nutrition.

Finding Children’s

Two and a half years went by and Andrew’s health stabilized, but by that time he had passed the window of opportunity when children generally develop feeding skills.

His parents continually tried to find help, but years of weekly sessions with a feeding therapist focused on taking bites of food were not showing much progress. “So much had happened that you couldn’t even get a spoon near his face,” explains April. “And he didn’t know what to do with his mouth. It would just hang open. He couldn’t chew. His tongue would protrude or stick way back. His mouth was just an abyss.”

Andrew’s parents soon exhausted the limited treatment options in their area and began to look elsewhere. Early on, April and Bruce had become part of a local feeding support group. “Doctors are referring people in,” says April. “There’s a big group of us because there are so many children who don’t know how to eat.”

Members were exploring options in other parts of the country and bringing back information for each other. April heard about Children’s Hospital from a member of the group whose child made a dramatic turnaround after coming to Richmond: “This young girl had such an aversion to food that you couldn’t even get food near her,” says April, “but when I saw her three months later she was eating.”

April quizzed the girl’s mom about the program and was intrigued. “She was just raving about how great the people are, how much it helped her daughter, and how they went back to the very beginning and taught her daughter how to eat. It wasn’t just cramming food into their mouth, it was more positive reinforcement.”

April realized how difficult traveling cross-country would be, but also knew how important it was for her son. “I have this theory that I never want to go back in my life and say ‘what if,’” she says. So in March 2002, April called Children’s Hospital and spoke with Feeding Program Nurse Debbie Grant, LPN-B and Case Manager Jennifer Atkinson, MSW. April describes the voices she heard as “just so nice.”

Within weeks the entire family flew to Richmond for a consultation with the Feeding Team. A month later, April and Andrew were back for treatment, with help from April’s mom, Barbara, who came from her home in Arizona for three weeks to help settle them in.

Feeding Program

The Feeding Program involves an interdisciplinary team that includes a physician, nurse practitioner, psychologist, nutritionist and specially-trained feeding therapists, who work together to address the medical, oral-motor, nutritional and behavioral needs associated with eating. Nearly half of the Program’s patients are dependent upon feeding tubes when they begin treatment.

Andrew started as a day patient; he and April came Monday through Friday for a structured day that included feeding sessions, assessment by team members, support group meetings, weekly team conferences, and related support services. Parents are considered part of the care team as their participation helps ensure that the progress made will transition to the child’s daily life.

Under the guidance of Occupational Therapist Amber Bishop, MS, OTR/L, Andrew’s main feeding therapist, treatment began with oral-motor exercises designed to increase the strength, range of motion and mobility in his cheeks, tongue and lips and to help him begin to be comfortable having utensils in and near his mouth. As his oral-motor skills developed, they moved to actual feeding, with Amber introducing liquids and foods, as April watched from the video viewing area. They started with drinks from a squeeze bottle and moved on to smooth textures like puddings and yogurts, and then foods that had been pureed in a blender.

At first progress was slow. Andrew was defensive about being touched and, though improving with exercises, his delayed oral-motor skills made eating a challenge. “Initially his cheek and lip strength was weak and he didn’t understand what to do when something was placed in his mouth,” says Amber. “So at first he would either pack food or liquid in his cheek pockets or, because his mouth was hanging open, it would simply fall out.”

The team studied Andrew’s feeding behaviors and came up with a structured mealtime routine, known as the treatment protocol, which would be followed by everyone who would feed him. The protocol focuses on rewarding the positive, and Andrew would be given specific rewards, such as bubbles, favorite toys or TV time, as he met each goal. This approach helped create a positive mealtime experience and consistent routine for Andrew; April, who has a background in chemical engineering, appreciated the structure and data it provided. “I’m wired to analyze things,” she says. “The protocol makes sense and fits the analytical part.”

The main goal was to reach a point where Andrew did not need tube-fed nutrition at all. Initial sessions focused on encouraging him to accept food in his mouth, regardless of what he did when it got there. As he began accepting foods, the protocol was adjusted so that he was rewarded with each swallow.

In most cases, the team works directly with a child until their mealtime habits reach a desired level, and then help parents learn the protocol and transition to becoming the child’s main feeder. However, around the third week, April suggested that she become involved more quickly, and the team decided to try. April sat in the treatment room for several sessions, then started feeding Andrew the following week with Amber at her side.
For Andrew - who is described by his father as a child who “loves to be loved” - wanting to please his mom worked. “He went from an ounce, to an ounce and a half, to three ounces and up to five ounces the next week,” recalls April.

With the intensity of the program and the mealtime protocol, which April continued with in the evenings and on weekends, Andrew’s progress continued. “Every recommendation we gave she followed and it really paid off,” says Amber. “The data couldn’t be prettier.”

By the time Bruce and Rachel arrived, the length of Andrew’s meals had been shortened as he was far exceeding his intake goal of 900 calories a day. The amount of food he expelled (lost due to poor oral-motor skills) dropped from 52% to 3%, and the amount of times he swallowed a bite within 30 seconds increased from 10% to 84%.

“Through all their exercises and persistence they just turned this kid around,” says April. “It is such a well-organized program, he just improved in all areas.”

By the end, Andrew’s facial structure had changed with more muscle tone and definition in his cheeks and lips. “It almost looks like he had a facelift,” says April.

He also no longer needs the tube, which is a huge hurdle from both a physical and social standpoint. April is already starting to see the overall effects of this: “When Andrew got here he was so serious but now he wants to play with kids, he wants to seek everything out. He’s really realizing what a cool world this is.”

Graduation Day

Before returning to Colorado, Bruce learned the mealtime protocol. During his first session, April encouraged Andrew eat a pureed nutrigrain bar and oatmeal. Andrew’s grin brightened the room as his father praised him with a “good job” after each and every bite.

April and Andrew will return in September for a series of sessions focused on more age-appropriate foods. They have a long-range goal of someday seeing their son enjoy a steak, perhaps during an overnight camping trip, one of the activities they enjoy as a family.

Andrew had an official graduation ceremony when he finished his day patient treatment. Cheers erupted as he was given a graduation cap signed by many team members and hospital friends who worked with him. Amid messages of “Congratulations” and “We’ll miss you” was Amber’s message: “I am so incredibly proud of you and your mom for all the hard work and dedication you put into ‘taking your bites.’ It has been a pleasure getting to know you. Love, Amber.”

For Andrew, the graduation cap is a symbol of yet another accomplishment in his extraordinary young life. “He’s a survivor,” says April. “A lot of the kids here in this program aren’t supposed to be here and they are. They’re survivors.”

For April, Andrew’s graduation symbolizes new experiences she can share with her son. “Feeding time with kids can be a very special time,” she says. “Just like with my daughter, some of my favorite times were feeding her. And I’m starting to get that with Andrew. Feeding just encompasses so much bonding time that I didn’t realize I didn’t have until I got it. That time with my son is a gift.”

In addition to a more adventuresome, happy child, April will return home with a full report for those in their group who face similar issues: “I have a friend who is in the same place I was three months ago. I’ll let her see the videos of Andrew eating and show her what we did, and brag about the team - they’re phenomenal, how they communicate and listen to the parents, and really work together to achieve a goal.

I have wonderful things to say about this place, just how much it changed our lives. It’s a fantastic feeding program. My life - and Andrew’s - is forever going to be changed because of this.”

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