Occupational Therapy in Action: Eating it All Up

Eating it All Up

4-year-old Ava’s weekly feeding treatments offer hands-on experience for OT students

By Rachel Heckman ‘13

Four-year-old Ava Koehle walks into the OT lab in St. Margaret Hall for her weekly feeding session with the Occupational Therapy department at Saint Francis University. She makes a loop around the room, stopping to take a quick bounce on the mini trampoline and grab the toys on the wall. She continues to explore the lab until she eventually makes her way to the table, where she spends a few minutes playing with bubbles and tuning into her senses. Finally, lunch is served and she’s ready to eat!

Known as the “diva” of the occupational therapy department among students and staff, Ava can light up any room and make everyone smile. Since fall 2022, she has been attending these feeding sessions as part of a hands-on, community-engaged lab with the students in the pediatrics course. Ava’s own great aunts lead the sessions: assistant professor of occupational therapy Dr. Julie Nagle and clinical assistant professor of occupational therapy Dr. Jennifer Misiura.

“She knows what she wants, and she gets it,” said Sarah McConnon, a fourth-year OT student at Saint Francis. “She walks around like she owns the place and loves to be the center of attention. I absolutely love it.”

“My favorite memory of working with Ava was during her feeding sessions when she would do something and then look up to make sure everyone was clapping for her,” said Cara Ash, a fifth-year OT student currently completing her level II fieldwork.

Over the past two years, the students in the course have watched Ava grow and thrive as she continues to meet developmental milestones in her feeding/eating journey, watching her learn to walk independently, and so much more.

“What Julie and Jen have been able to do for Ava is incredible. She would not be as far as she is without them,” said Brittany (Chmelik) Koehle,  Ava’s mom. “And it’s great to be related because we get them at family functions too.”

Ava’s Story

Before Ava was born in December 2019, she was diagnosed with a congenital heart defect and a cleft palate. Although her parents, Saint Francis University alumni Joe Koehle (’11) and Brittany ('12), would not know the full extent of her diagnosis until after her birth, they began to prepare for a life with a medically complex child.

Ava’s first hospital stay was 73 days. She was intubated shortly after birth, and at just one-week-old had her first of nearly a dozen surgeries – this one to repair her esophagus which had formed to connect to her trachea rather than her stomach. A month later, Ava had her first of three open heart surgeries. During her recovery, she aspirated and required a gastrostomy tube for feeding, through which she has been getting the bulk of her nutrients for nearly her whole life. By the following fall, Ava had also undergone several other procedures, including two surgeries to repair her cleft lip.

Shortly before her first birthday in December 2020, Ava went into cardiac arrest at home. Her parents rushed her to Conemaugh Memorial Medical Center in Johnstown, and she was quickly life-flighted to Children’s Hospital of Pittsburgh. There, they discovered a blood clot in a shunt from her prior heart surgery. They removed the clot, and Ava underwent her second open-heart surgery. Nearly a year later, in October 2021, Ava had the third and final surgery to repair her heart.

Over the next two years, Ava underwent two more procedures. One to repair her palate – during which her tongue swelled up so much that it was blocking her airway, and she had to remain intubated for several days – as well as cochlear implant surgery. Now Ava, who was born deaf, can hear loud emergency sounds, but still requires signs to communicate every day.

Despite the necessary medical trauma Ava endured during her first four years of life, those close to her say she is one of the strongest little warriors. She has remained happy, goofy, and full of life through it all. Now, she attends pre-school at the IU8 classroom, and loves to goof around with her older brother and sister, Gino, 9, and Ella, 7. She also continues to attend physical therapy, hearing support therapy, speech therapy, and her weekly feeding sessions at SFU.

Meeting Milestones

Because of Ava’s complex and traumatic medical history and her diagnosis, at the age of two she was still not eating by mouth, and many therapists were too nervous to begin feeding treatments. However, it was a basic skill that her parents were hoping for her to learn and eventually enjoy.

“Eating by mouth is something that every parent and caregiver wants for their children. As in many families, (such as ours) family mealtimes are important rituals that provide bonding, as well as pleasure. Not to mention the many traditions that revolve around food,” said Dr. Nagle. “Working with Ava on skills needed for feeding was something that Joe and Brittany had discussed with us, as working with kiddos who have feeding and eating difficulties is actually a specialty treatment area that Jen and I have been trained in and involved with since 2012.”

In the late summer of 2022, Dr. Nagle asked Joe and Brittany, her nephew and niece, if they would be willing to bring Ava to the OT department to work with herself, along with Dr. Misiura, and the pediatrics students, and they happily agreed.

During the weekly sessions, students learn in a more hands-on environment and interact with Ava, her family, and her caretakers. They assist and observe Dr. Nagle and Dr. Misiura as they introduce new foods of various tastes and textures. They discuss new protocols to implement allowing them to develop their own therapeutic use of self, something that is difficult to teach from a textbook alone.

“The students have learned so much from interacting and engaging with Ava,” Dr, Nagle said. “Not only complex concepts related to feeding and eating, but also about her medical conditions, how to interact with parents and caregivers, and most importantly, how to keep ‘play’ at the heart of all treatment sessions, as that is the primary occupation of children and how they learn best.”

At the same time, the weekly feeding sessions have also helped Ava learn to love food. Rather than associating eating and drinking by mouth with the trauma of being intubated, she has been able to learn that sharing a meal is a pleasurable experience.

“It’s like working with a sponge, watching her soak up everything in her environment,” said Kayla DeHetre, a fourth-year OT student at Saint Francis. “It can be scary for kids, especially with feeding, so it’s been interesting to see her finding that confidence in [Dr. Nagle and Dr. Misiura] as well as herself.” 

“I was honored to be in the room when Ava took her first full bite of carrot. When she felt that ‘crunch,’ watching her face light up is something I’ll never forget,” DeHetre added.

While Ava’s feeding/eating journey began slowly, she adjusted quickly and was soon very willing to try new things. She loves the attention of the students in the room, and their cheering and applause quickly became a motivator for her. Even if she did not like something, “she would do it for the crowd.” The positive attention has helped her reach milestones much more quickly than even her parents expected.

“Watching her progress in just a few short weeks was incredible,” said “Hannah Horvath, a fifth-year OT student who worked with Ava in the fall of 2022. “During my time spent with Ava, she began by only exploring food with sight, touch, smell, and sound. The last time I saw her, she was able to take full bites of food, appropriately manipulate utensils, and drink from a straw – things her family thought would take years to accomplish.”

A Mutually Beneficial Experience

It’s safe to say that Ava has won, and continues to win, the hearts of all the students who have the privilege of interacting with her. It’s also safe to say that over the past two years, the Saint Francis University Occupational Therapy Department has become a place of comfort for Ava – a place where she can play, learn, and just be a kid. As she works hard and meets milestones, she is also inspiring whole groups of students who will use their gained knowledge and compassion when they begin to treat their own patients out in the field.

“Ava’s parents are so open with discussing Ava’s life,” said McConnon. “Some people aren’t as vulnerable and don’t like to talk about their conditions, but they love that we’re interested in learning through her.”

Since beginning her feeding sessions in 2022, Ava has become a very familiar face in the OT department, and not just among those students in the pediatrics course. She has also participated in additional learning experiences as well. She is currently involved with Go Baby Go, a collaborative program that provides adaptive toy vehicles to children with disabilities, and Baby Day, an event that gives students the chance to observe and interact with babies and small children of various ages.

For many of the students working with Ava, her determination and progress has validated their calling to become occupational therapists. For others, it has encouraged them to pursue a specialty in pediatrics.

While for Ava, the students’ positive attitudes and willingness to work with her despite her medical complexities have pushed her to try and have provided her with opportunities not thought possible for a child with her diagnosis.

“We feel truly blessed that Joe and Brittany have been so willing to share her with our students,” said Dr. Nagle. “It has been such a mutually beneficial experience.”

Twin sisters and peers. Dr. Julie Nagle and Dr. Jennifer Misiura share a very special relationship with their medically complex great niece Ava, who visits them and their students in the occupational therapy department for weekly feeding sessions. The treatments have helped Ava reach developmental milestones such as eating and drinking by mouth and walking independently. However, they feel that none of this would have been possible if God hadn’t set the wheels in motion nearly 35 years ago.

On December 30, 1989, Julie and Jen’s nephew, Matthew, was born with “severe and profound” disabilities. As the youngest of eight children, they spent a lot of time with their older siblings, nieces, and nephews, so they were also very involved in Matthew’s care as well. Julie and Jen’s sister would allow them to hold him, play with him, and feed him, and they even participated in his early intervention therapy treatments. It was because of Matthew that they both decided to become occupational therapists. Exactly thirty years later, on Matthew’s birthday, Ava was born with many medical complexities of her own.

“We think is so cool that Matthew and Ava share a birthday, as those two miracles have really influenced our lives in so many special ways,” Julie said.