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Sheila Williamson remembers the fear she felt as she waited for her son’s surgery to begin.

“I’m looking at this little body—my little boy—and thinking that he has no choice but to be the first,” she said. “My fears could not be lifted knowing that other kids like him had done well. No one had ever tried this on someone so young.”

Three-year-old Ijah Williamson was about to become the youngest child to ever undergo a procedure called total pancreatectomy and islet-auto transplant (TP-IAT). During a roughly 12-hour operation, a surgeon would remove his pancreas, extract its islet cells, and implant those cells back into his tiny liver to prevent diabetes.

A complex surgery for a very young patient
The family's decision to undergo surgery came after a long battle with chronic pain. For years, Ijah experienced such debilitating chronic pancreatitis (infammation of the pancreas) that he often spent weeks at a time in the hospital. And even when he wasn't hospitalized, his pain required 24-hour management.

Desperate for a solution, the Williamsons had traveled from their home in Seattle for a consultation at the University of Arizona. There, they learned that Ijah’s pancreatitis was so severe that relief might only come in the form of a TP-IAT.

Beyond the obvious risks of surgery, however, there was a more significant concern: the University of Arizona had never performed the procedure on a child under age 12.

M Health offers rare expertise for one-of-its-kind surgery
“They said we needed to go to the University of Minnesota,” Williamson said. “That was the only place with the expertise to even consider this surgery on a child so young.”

The TP-IAT team at University of Minnesota Masonic Children’s Hospital—led by Srinath Chinnakotla, MD—performed a complete evaluation with Ijah in the summer of 2013. Ijah was just 3 years old at the time, and the team recommended holding off on surgery until absolutely necessary.

Learn More about TP-IAT surgery at University of Minnesota Masonic Children’s Hospital.

But later that same summer, Ijah endured one of his worst pancreatic attacks. “He went for 10 days without eating,” his mother recalled. “The team at M Health said it was time to take action.” At just 3 years old, Ijah would become the youngest child to ever undergo TP-IAT surgery.

A day of waiting and worry
Williamson recalls the day of her son’s surgery with a long pause followed by tears. “Now that things are better, it’s so hard to go back to that day,” she said. “The emotion comes rushing in.”

For the Williamsons, waiting was the hardest part. The surgery takes approximately 12 hours and involves three major phases. First, surgeons remove the pancreas. Then they isolate and extract the islet cells from the pancreas. Islet cells produce and secrete insulin and glucagon—hormones that are essential for maintaining normal blood sugar. The cells are then implanted into the liver, where they will continue regulating blood sugar even without the pancreas.

Ijah’s surgery was free of complications, but Williamson struggled when she saw her son in the recovery room. “He was covered in tubes and surrounded by machines,” she said. “It broke my heart. I don’t know that anything can really prepare you for that.”

A new beginning for Ijah
Ijah's father, Tim Williamson, also describes the days after surgery as difficult. “I had to push him to sit up and to walk when all I really wanted to do was hold him in my arms," he remembered. "Our family is very grounded in our faith and, through the hands of the surgical team, our son was given a second chance.”

The Williamsons knew they had reached a turning point once Ijah began making progress in his recovery. “Suddenly, he had this sense of wonderment,” Williamson explained. “It was as though the world had opened up and was a warm and wonderful place for him. No more pain.”

Today, Ijah is a happy 4-year-old boy who started preschool this fall. Although he will need ongoing monitoring and still uses a feeding tube to support his nutrition, his pain is now gone.

Williamson offered a heartfelt ‘thank you’ to the University of Minnesota Children’s Hospital team that cared for her son. “Ijah had always been afraid of hospitals and medical teams, but at the U he felt at home. I can’t thank them enough for helping us get his life back.”

Update 11/17/2016: Ijah is now a first-grader. He spends his days running around on the playground with friends, reading and writing stories and building with Legos, according to his mom, Sheila. 

"The years he spent in the hospital are nearly forgotten to him and he has moved completely away from his feeding tube," Sheila said. "He likes to tell people he meets that he used to have tummy pain really, really, really bad! And that Dr. Chinnakotla fixed it with band aids and glue inside!"