Bennett’s Story

As a Medical Social Worker at ChildServe, Jenelle Clabaugh, MSW, LISW, brings small miracles to life every day in the way that she helps families. Jenelle connects kids and families with the doctors, resources, and community services they need to thrive.

“I love being able to use the knowledge and experience I have to connect people and fill in the blanks when they have questions or feel lost,” said Jenelle.

One of the many families Jenelle supports is that of 5-year-old Bennett. Bennett was born with two congenital birth defects, a diaphragmatic hernia and an omphalocele. These defects caused holes to form in Bennett’s diaphragm and his abdominal wall. As a result, Bennett’s abdominal organs developed both inside his chest cavity and outside his body. The chances of being born with these two congenital defects is 1 in 25 million.

Bennett spent five months in the Neonatal Intensive Care Unit (NICU). He underwent 12 operations before he was five months of age. When babies spend a lot of time in the NICU, they can face physical, fine motor, and feeding delays, leading them to need extensive rehabilitation in the months and years that follow.

“Kids with Bennett’s condition often face a wide range of developmental delays. We’ve overcome most of them, but his feeding issues remain and are restricting his ability to grow,” Bennet’s mom Cara said. “Bennett is capable of eating and drinking by mouth, but he seems to lack a desire to eat. Bennett currently relies on supplemental feeding through a G-tube to ensure he’s gaining weight and growing.”

In the past, Bennett received numerous feeding evaluations and underwent feeding therapy in two different states without seeing much progress. As Cara explained Bennett’s background and the many treatments they’ve already tried, Jenelle listened closely.

“We needed a creative path forward to address Bennett’s feeding issues,” says Cara. “When we engaged with ChildServe, we were nervous we would be directed into another feeding therapy program, which hadn’t worked for Bennett in the past.”

To help Bennett and Cara move forward, Jenelle decided to meet with an unusual pairing of experts at ChildServe: the feeding clinic team lead and an occupational therapist. Rather than suggesting more feeding therapy, they thought that the problem might be rooted in Bennett’s primitive reflexes.

Primitive reflexes are automatic motor responses caused by a sensory input. These reflexes are normal in infants and help to promote functional development, but if they remain as kids grow older, they can result in a variety of functional impairments. Since Bennett spent so much time on his back in the NICU as an infant, the team felt it was likely that his primitive reflexes never fully integrated.

Jenelle was able to come back to Cara to offer a unique evaluation for Bennett that combined both feeding and primitive reflex. He was placed into primitive reflex integration therapy 3 days a week for 12 weeks.

“Reflexes are the first thing you learn primitively as an infant,” said Ashley Jobe, Occupational Therapist and Clinical Team Lead at ChildServe who worked with Bennett during his reflex integration therapy. “If you don’t have that solid foundation, all the things that build on that become problematic. For Bennett to eventually have his feeding tube removed, the reflexes related to digestion would first need to be integrated.”

With the knowledge and expertise at ChildServe’s Primitive Reflex Integration Intensive Therapy program, Bennett has continued to grow and make developmental gains. 

Bennett’s family and the ChildServe team got to celebrate Bennett’s progress in several areas that demonstrated his reflexes were integrating in ways they hadn’t been: he improved his core strength, his lower intestines improved their digestion, he no longer needed medicine to move food out of his digestive system, and he was able to move to a nutrition plan for his g-tube that included a blended diet rather than just PediaSure.

“Bennett hasn’t yet reached his goal to be feeding-tube free, but I feel the progress he was able to make through reflex integration puts him in a better position to eventually eat fully independently,” said Ashley.

Cara remarked that feeling heard made a huge difference to offering their family hope.

“What ChildServe – and Jenelle specifically – has done is provide an avenue that no one else mentioned as a possibility,” said Cara. “The key factor in our experience of getting connected with the Primitive Reflex Integration Intensive Therapy program was Jenelle’s expertise and willingness to listen to me as a partner in Bennett’s care.”

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ChildServe improves the health and well-being of more than 4,600 children each year through specialized clinical, home, and community-based programs and services. We serve children with developmental delays, disabilities, acquired injuries, and other special healthcare needs.

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