Crohn’s Disease: Zachary’s Story

When Zachary was born, he had a fever. He was given a spinal tap and put on IV antibiotics at the hospital before being discharged. Immediately afterward, he began experiencing what his mother, Barb, describes as “lots and lots of explosive diapers.” To this day, Barb wonders about the effect those antibiotics had on her son’s health.

During his first few months, Zachary was eating well and growing, but the diarrhea problems persisted — ruining, for example, his cute pumpkin costume for his first Halloween. “We never left the house without at least four to six changes of clothes,” says Barb. “He never wore onesies like other babies, not even on a cold day, as I knew that would be one more piece of clothing that would have to be removed and would ultimately be ruined.”

His first year was also marked by extensive crying fits. His father, Ron, would put him in the car at all hours of the night and drive him around to quiet him down.

The situation worsened when he was 10 months old: Barb found blood in Zachary’s diaper. This occurred several times over the next months, and each time the family’s pediatrician assured them Zachary was fine. Finally, after an incident at an outdoor festival left both baby and mother covered in diarrhea, reducing Barb to tears, they contacted Children’s Hospital of Philadelphia’s Division of Gastroenterology, Hepatology and Nutrition.

An unexpected diagnosis

At CHOP, Zachary was seen by Robert Baldassano, MD, a pediatric gastroenterologist and Director of the Center for Pediatric Inflammatory Bowel Disease. Going in, Barb suspected Zachary had a food allergy. During the visit, Baldassano thought the culprit might be toddler’s diarrhea.

“While we were packing up to leave,” Barb remembers, “he had a bowel movement. When I changed his diaper, there was blood again.” Baldassano decided tests were needed: blood work, a test to rule out cystic fibrosis, a colonoscopy and endoscopy.

The colonoscopy revealed Crohn’s disease. While getting a diagnosis was a relief, the hunt for an effective treatment went on for years.

Initially they tried medication, several capsules a day that Zachary’s parents had to sprinkle onto his food and hope the 2-year-old ate everything. Unfortunately, his symptoms got worse over the next year to the point that he was given steroids. “What we didn’t know was that his escalating symptoms were a result of him being allergic to the medication,” says Barb. Zachary even developed pseudotumor cerebri — high blood pressure within his skull — and needed to be hospitalized.

With the steroids possibly contributing to his declining health, Zachary was switched to a biologic treatment called Remicade, which blocks an excess of a protein that causes inflammation. Zachary was the youngest child in the country on the medication. After three years, however, he still wasn’t thriving. There was only one more option.

Zachary steps up

The family and the clinical team decided to begin nutritional therapy, which required the insertion of a feeding tube via his nose into his stomach each night. Barb and Ron had a hard time imagining doing this to their 6-year-old son every night. But they went to the training day — and that’s when Zachary surprised everyone.

“From the moment when they were showing us how to do it,” remembers Zachary, “I wanted to do it myself. I knew it was going to be something I would need to do for a while, and I didn’t want to impose on anyone.”

“Zachary tried and tried until he was successful,” Barb says about that day. “He continued to insert his tube and even set up his feeding bag for the next eight years!”

Within a month, everything changed. Zachary was growing, eating, playing and had tremendous symptom relief. He stayed on nutritional therapy, with no other medications, until he was about 14. At that point, says Zachary, “I was doing the tube feeding less, and the tests were not changing. Dr. Bob felt I was in remission.” He hasn’t needed any therapy since.

A few years ago, Zachary got involved in a robotics club at the local community college, and through it, “I found what I like,” he says. The members compete to build robots that can perform certain tasks, like picking up cubes or playing King of the Hill.

“Zach’s disease has taught him how to continue fighting and to never give up,” says Barb. “It has taught him to be caring and kind and to accept those who are different.” Then she adds, “It has taught all of us that lesson.”