Chewing and Swallowing Problems: Noah’s Story
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Noah experienced sensory delays as a baby, one of which was a lack of the natural inclination to chew and swallow solid food. With support and training from CHOP’s Pediatric Feeding and Swallowing Center, he’s now eating a balanced diet and is on track to be feeding himself.
Noah weighed just 3 ½ pounds at birth, the smaller of a pair of premature twins. He was diagnosed with a sensory delay. Noah didn’t have the natural inclination to nurse as an infant, and when he started on solid foods, he didn’t know to chew before swallowing.
When Noah tried to eat food with small solid pieces he would gag, quickly leading to an aversion to anything other than liquids and finely pureed food. He was also relying completely on his parents, Kimberly and Daniel, to feed him. He didn’t put food in his mouth himself, and refused to hold a utensil. Because it was so difficult to feed him, he was not growing as he should have been, and was diagnosed with failure the thrive.
Noah’s pediatrician in Souderton, PA, who is affiliated with Children’s Hospital of Philadelphia (CHOP), suggested that Kimberly and Daniel bring him to CHOP’s Pediatric Feeding and Swallowing Center.
Kimberly and Daniel started with monthly visits to the Feeding and Swallowing Outpatient Clinic. A team of nutritionists and behavior therapists observed Kimberly and Daniel feeding Noah, and then provided recommendations on how they could help him develop better eating habits.
Noah was making progress, but he was still having difficulty with feeding. When Noah was 3, the family enrolled in the Intensive Day Hospital Feeding Program. The program promotes positive developmental feeding skills and consistent mealtime acceptance for children with feeding problems, while providing training for their caregivers. The Intensive Day Hospital Feeding Program is one of the largest programs of its kind, treating more than 100 children each year who come from all over the world.
Kimberly and Daniel brought Noah into the Feeding Program every day for four weeks. For the first couple of weeks, Kimberly and Daniel watched through a one-way mirror as a therapist fed Noah three meals: breakfast, lunch and an early dinner. The therapist followed a strict protocol that uses positive reinforcement to encourage the acceptance of a broader range of foods.
At each meal, Noah would have feeding rules explained to him. For example, Noah would be asked to take a bite of the food presented to him. If he did, he would be given a toy to play with for thirty seconds before his next bite. If he didn’t take a bite when asked, the therapist would guide his hand to his mouth with the bite, then he could play with the toy. If he refused the bite even with that help, he 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, ones Noah was known to like, were offered in larger quantities. New foods were offered in smaller quantities. This made it easier to get him to try small tastes of new foods until he became familiar with and accepted them.
For Kimberly and Daniel, it was a little difficult at first to give up control of their son’s feeding and to accept the new method. But by observing through the one-way mirror, they soon realized that the Feeding Program therapists were making the meal an enjoyable experience for Noah, while at the same time pushing him to try new foods. And as he ate more, and a greater variety of food, his health improved.
“They got Noah to eat foods that my husband and I had 'died on the hill' many times trying.”
“It was like no big deal for him when they followed their method. He might make a disgusted face, but he would eat it, where we had been putting it in his mouth over and over as he spat it out,” says Kimberly
For the second phase of the Feeding Program, Kimberly and Daniel were brought into the room to feed Noah using the same protocol with coaching from a therapist. When they were comfortable with new techniques, Kimberly and Daniel would feed Noah while the therapist watched from behind the one-way mirror and offered coaching after each meal.
By the end of the four-week program, Kimberly and Daniel both learned how to feed Noah. A nutritionist also gave them advice on what to feed Noah so that they could continue to build on the progress he had made during his intensive treatment.
“It is a commitment for the entire family,” says Kimberly. “Parents need to realize that to keep the momentum going and help your child learn to eat, we have to follow the CHOP protocol exactly. If we slip, the kid’s feeding slips. We have to realize that while eating is easy and natural for us, it is a job for them. They are mentally and physically exhausted by it.”
With Kimberly and Daniel’s perseverance, and the ongoing guidance of the Feeding and Swallowing Center team, Noah has continued to eat more foods. As a result, his health has improved, and he is no longer classified as failure to thrive. Where mealtimes before had been a battle, often ending in frustration, they have become a regular routine that Noah accepts and mostly enjoys.
At 4 years old, Noah is growing at a healthy rate and thriving with a healthy intake of balanced nutrition. His good health has allowed his delightful personality to emerge and flourish. “He’s very charismatic,” says Kimberly. “The life of the party.”
Noah is proud of his success in learning to eat more food and in taking on more of the feeding himself. And he is very proud of his connection with CHOP. He calls it “My CHOP hospital,” and loves the people there.