Developmentally delayed as a baby, Gracie didn’t make the easy transition from pureed to solid food like most babies do. When her parents, Sarah and Kevin, started to give her food with texture, like small bits of soft fruit or vegetables, she would gag. That scared Gracie, and she quickly developed a fear of food.

Her pediatrician referred the family to the Martha Escoll Lubeck Feeding and Swallowing Center at Children’s Hospital of Philadelphia (CHOP).

“I didn’t know what to expect. I was nervous. Mealtimes by that point were meltdowns and frustrations,” remembers Sarah. “But the experts at the Center were very calm and understanding. They’d seen it all before. I felt relieved. This was going to help her.”

Coordinated care

The family began monthly visits to the Feeding and Swallowing Outpatient Clinic. Their multi-disciplinary team included a pediatrician, speech therapist, occupational therapist, nutritionist and psychologist.

During each session, the team observed Sarah as she fed Gracie, watching what the baby ate, how she reacted to different foods, and how Sarah responded to Gracie’s behavior. After each observation, the team provided recommendations to Sarah and Kevin and would model how to implement the suggestions during mealtime. Sarah would then try those ideas at home and report back.

“Each time we had some success,” says Sarah. But Gracie still wasn’t accepting enough solid food to sustain healthy growth. The team recommended that the family enroll in the Intensive Day Hospital Feeding Program.

In this program, children come to CHOP every Monday through Friday for four to six weeks. A feeding therapist feeds the child, following a careful behavior modification protocol that sets clear expectations and provides constant positive reinforcement, while the parent watches through a one-way mirror.

At each meal, Gracie would have feeding rules explained to her. For example, Gracie would be asked to take a bite of the food presented to her. If she did, she would be given a toy to play with before her next bite. If she didn’t take a bite when asked, the therapist would guide her hand to her mouth with the bite, then she could play with the toy. If she refused the bite again, she would not be able to play with the toy. The therapist would turn away for thirty seconds before turning back and resuming the meal with the next bite.

The amount of food in a “bite” varied. Preferred foods, meaning ones Gracie was known to like, were offered in larger quantities. New foods were offered in smaller quantities. This made it easier to get her to try small tastes of new foods until she became familiar with and accepted them.

After a couple of weeks, the parent starts to feed the child using the same protocol, while the therapist watches and gives advice. By the end of the program, the parents and caregivers are trained to continue the feeding protocol at home.

A feeding breakthrough

“Feeding had always been a battle for us,” says Sarah. “I expected to see more of that. She cried during the first meal, and cried a little during the second meal. Then she went in willingly. Their approach is so gradual and systematic that she experienced success and progress almost immediately. To see that was a huge relief for me.”

Gracie responded so well to the feeding protocol that she was discharged from the program early. Sarah and Kevin were both trained in the method, and have since built on the progress Gracie made while she was at CHOP, getting her to accept new foods and improving her nutritional intake. Now 3, Gracie is an active, happy child. She enjoys eating, and she’s growing and developing nicely.

“I felt supported going into the program. They set us up for success. Gracie no longer sees mealtimes as threatening, and is able to interact with food in a positive way. Our experience with CHOP was truly a life-changing one.”