A new path forward

Research

A new path forward

By
Mayo Clinic Staff

June 23, 2022

From the beginning of Hussein’s life, a shroud of worry surrounded him. Something was wrong. The infant couldn’t keep down anything he ate. When he was 6 weeks old, his mother, Manal, noticed blood in his stool. He lost precious weight and was hospitalized due to failure to thrive. Hussein’s first few months were defined by medical tests, painful procedures, and uncertainty.

“YOU NAME IT, THEY TESTED HIM FOR IT,” HUSSEIN’S FATHER, ALI, SAYS. “THEY PUT A FEEDING TUBE THROUGH HIS NOSE. HE WAS HOSPITALIZED FOR 20-PLUS DAYS. HE REALLY WENT THROUGH A LOT. AS A BABY, HE COULDN’T TELL US, BUT YOU COULD JUST LOOK IN HIS EYES AND SEE.”

Doctors identified Hussein as having duodenitis, an inflammation of the first section of the small intestine, and diagnosed him with inflammatory bowel disease (IBD). With medications to treat the intestinal inflammation and a strict diet of hypoallergenic baby formula, Hussein gained weight and was released from the hospital.

For the next eight years, several times a year, the family made the nearly three-hour drive from their home in northern Ohio to Cincinnati for specialist visits to monitor Hussein’s inflammation, which varied in location and intensity.

“We were driving all the time, going back and forth,” Ali says. “They did two lower and two upper GI scopes. It was hard having him go under anesthesia all of the times for the different tests, and we couldn’t give him anything to eat. We continued to get stool samples. It was eight years of hell.”

Through it all, Manal and Ali wondered if their child had been correctly diagnosed. They also wearied of the long-distance trek and sought medical care closer to home.

In 2019, Hussein’s new pediatric gastroenterologist informed Manal and Ali about a test recently developed and implemented by Mayo Clinic Laboratories that might provide clarity on what was triggering Hussein’s IBD.

“We went along and did the test,” Ali says. “That is when we found out he had familial Mediterranean fever.