Giving Back for Patients with Rare Disease of the Esophagus
Shay will never forget her family’s first visit to Cincinnati Children’s nearly two decades ago.
Her son, Chayce, was diagnosed with eosinophilic esophagitis (EoE), a rare disease of the esophagus, at the age of 5. EoE typically shows up in young babies who have lots of spitting up and vomiting, but it can also emerge in teens or young adults who are unable to swallow and get food stuck in their esophagus.
“We went through a lot of gastroenterologists [back home] in Michigan,” Shay said. “Chayce got diagnosed at a local hospital that put him on formula as a baby. We kept trying to introduce food, but he would get sick.”
She and her husband, Marc, decided to take matters into their own hands. They began researching the condition to find someone who could care for their son. Shay kept hearing about Cincinnati Children’s and reached out to Philip E. Putnam, MD, to see if help was possible.
“I will never forget that first visit,” Shay said. “Marc and I were both so overwhelmed when we went to Cincinnati. As a parent who was new to this complex disease, I couldn’t comprehend that I couldn’t feed my child.”
Driving from Michigan to Cincinnati can take more than five hours. Making that trip with three children for regular doctors’ visits for a chronic condition can make it even more challenging, but Shay knew they made the right decision when she and Marc first met with Dr. Putnam and his team to learn about their options for Chayce’s care.
“They were so wonderful,” Shay said. “As we were going through his history, they kept sharing that yes, they have seen this before and yes, it is treatable. We felt like we were being heard. That day I was able to unload years’ worth of stress. I could finally explain how our child had been suffering.”
Chayce continued to be evaluated by other specialists including Pablo Abonia, MD, an allergist, as well as experts from immunology, rheumatology and genetics. By the time Dr. Putnam recommended a feeding tube, the family was so comfortable with the care Chayce was receiving they were confident it was the right step in his care.
When Chayce’s younger brother, Keegan, started experiencing similar symptoms a few years later, he was immediately seen at Cincinnati Children’s. And when Keegan needed his own feeding tube placed at the age of 6, Shay felt comforted by the experience of having been there before.
“While putting in the tube felt big and scary at the time, today it’s such an ordinary part of our lives,” Shay said. “You find your normal and what works for you. We’ve had our ups and downs but we know that the care team understands our boys’ challenges and successes.”
It didn’t take long for Chayce and Keegan to start feeling better.
"The care team got us to a point where our children’s lives were changed,” Shay said. “They could get their full nutrition like they could never do before. The change we saw in our sons is why we kept traveling back to Cincinnati.”
No Symptom Unchecked
Cincinnati Children’s has been a destination for families seeking EoE care for decades. It was one of the first hospitals to offer a nationally recognized center for this rare disease in a single location. Led by Marc Rothenberg, MD, PhD, Margaret Collins, MD, and Dr. Putnam, the team of collaborating experts spans across allergy and immunology, pathology, and endoscopy, respectively. This multidisciplinary approach has proved critical for effective EoE treatment in patients like Chayce and Keegan.
“Part of the challenge with EoE is you’re dealing with a lot of overlapping problems,” Dr. Abonia said. “We are tasked with dealing with the totality of symptoms like food allergies, hives, eczema and more that affect these patients more than they do other children.”
Fortunately, Cincinnati Children’s helped Chayce and Keegan in managing this multidisciplinary care. They did so in a way that worked for the whole family, especially given the alternative of seeing half a dozen specialists across different sites in Michigan.
