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Moments: Lifelong pain is at an end for ‘Super Charlie’

Five-year-old Charlie Ray is the second-youngest patient to ever receive a total pancreatectomy and islet-auto transplant (TP-IAT) at University of Minnesota Masonic Children’s Hospital.
Excruciating pain due to chronic pancreatitis kept 5-year-old Charlie Ray (second from left) from sleeping, eating or playing basketball. After exhausting their options, his parents Megan and Roger brought him to University of Minnesota Masonic Children’s Hospital for an innovative surgery.
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Ask 5-year-old Charlie Ray what his stomach felt like earlier this year, and his response is simple:

“Ouchie, ouchie, ouchie, ouchie, ouchie,” he said, covering his stomach with his hands and frowning.

But Charlie—dubbed “Super Charlie” by his friends, family and fans—is quick to move on from that question. He’d much rather talk about basketball (he plans on playing “50,000 games” in his life), or firefighters (he has a firefighter-themed birthday coming up), or chicken nuggets (his favorite food).

For Charlie’s parents, however, his lifelong bout with chronic pancreatitis is not so easy to forget.

“We couldn’t sit down to dinner as a family, because Charlie couldn’t eat solid food,” said Megan Ray, Charlie’s mother. “We would eat cold pizza in the bathroom, because we didn’t want Charlie to smell it and feel like he was missing out.”

Excruciating Pain
From the day he was born, Charlie struggled with intense abdominal pain. He cried often, couldn’t sleep and struggled to gain weight. Megan and her husband Roger chalked up Charlie’s discomfort to severe food allergies, which also plagued Charlie’s older brother, Carter.

“He screamed around the clock for his first six months,” Megan remembered. But as Charlie got older, the pain seemed to dissipate. Though he still complained occasionally, it didn’t always affect his daily life.

After a pain flare-up in 2013 caused Charlie to begin vomiting, the Rays hospitalized Charlie. But doctors in Omaha—where the family lives—told them a stomach virus was the likely cause. During a second visit in January 2014, Charlie’s care team ordered an ultrasound and blood tests.

The tests found an enlarged pancreas and elevated pancreatic enzymes. Charlie was diagnosed with chronic pancreatitis, and doctors in Omaha referred Charlie to Mayo Clinic in Rochester, Minn. There, Charlie underwent a series of high-risk endoscopic exams. The Mayo team discovered constrictions in the pancreatic duct, which prevented the organ from draining normally. Surgeons placed a small tube in the duct to open it, with the hope that the procedure would end Charlie’s pancreatitis. The stent would need to be replaced monthly until the duct could remain open on its own.

Rather than improving, Charlie’s condition worsened. Between April and July 2014, Charlie and his family returned to Mayo four more times after the stents repeatedly clogged or fell out. The last time, Charlie was airlifted to Minnesota. Out of options, Mayo referred Charlie to Pediatric Transplant Surgeon Srinath Chinnakotla, MD at University of Minnesota Masonic Children’s Hospital.

Chinnakotla recommended a total pancreatectomy and islet-auto transplant (TP-IAT). During the extensive operation, Charlie’s care team would remove his pancreas, spleen, duodenum and gall bladder. Specialists would then extract the pancreas’ insulin-producing islet cells and implant those cells back into his liver in an attempt to prevent diabetes.

The operation was scheduled for Aug. 29, 2014.

Our surgeons have completed over 550 TP-IATs—and roughly one quarter of those were performed on children ages 3-18. Learn more about our Pediatric TP-IAT program.

Faith
After a spring and summer spent in and out of hospitals, the Ray family began mentally preparing for Charlie’s surgery. Charlie would be the second-youngest patient to ever receive a TP-IAT at the children’s hospital.

“My hardest moment was actually handing him off to the operating team. It’s like handing your child off to daycare for the first time, except exponentially worse,” Megan Ray said. “We put a lot of faith in the medical staff. If anyone was able to do it, because of Charlie’s small age and size, it would have to be done at the University of Minnesota.”

Five-year-old Charlie Ray is the second-youngest patient to have ever received a total pancreatectomy and islet auto-transplant at University of Minnesota Masonic Children’s Hospital.

The initial surgery proceeded well under Chinnakotla’s guiding hand; surgeons removed the pancreas and transplanted 136,000 of Charlie’s islet cells to his liver. But several days later Charlie was back in the operating room for an unexpected complication. After that procedure and another hospitalization, Charlie was discharged early.

“Dr. Chinnakotla cared for Charlie as if he were his own son,” Megan said. “But there’s a whole team of people supporting what he is doing, and that shouldn’t go unnoticed.”

Although the 5-year-old is still being closely monitored and routinely receives insulin, pancreatic enzymes and other medications, a recent test showed relatively healthy blood sugar levels—suggesting that the transplanted islet cells are starting to work.

One thing is clear: “Super Charlie” is no longer suffering from daily abdominal pain. Once again, Charlie can sleep all night without being disturbed. Once again, the family is able to gather around the dinner table for a meal. Once again, Charlie can chow down on his favorite food, chicken nuggets.

“Right now, he’s in less pain than he’s ever had in his entire life,” Megan said. “He got his life back after this. There’s nothing better in the world.”

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