Sand Springs toddler awaits rare transplant
BY SHANNON MUCHMORE World Staff Writer
Sunday, November 04, 2012
11/04/12 at 3:58 AM
From the age of 6 weeks, Sand Springs infant Nolan Sensintaffar spent nearly every day screaming and crying.
He eventually just stopped eating.
His parents went to several doctors and some told them to simply enjoy their time with him because nothing could be done.
Specialists in Nebraska told Nolan's parents he was in dire condition when they saw him, said his mother, Heather Sensintaffar.
"They said he was one of the worst cases and he probably wouldn't have made it through the end of the month," she said.
Nolan, who just turned 2, is now on the waiting list for a rare pancreas and small bowel transplant to be performed in Nebraska.
Family and friends are hosting a benefit at 3 p.m. Sunday in Jenks to help Nolan's family with expenses.
Despite numerous tests, doctors don't really know what is causing Nolan's problems. His bowel doesn't work properly and he isn't able to digest food, said his pediatrician, Dr. Sherri Gordon, who works at Pediatric and Adolescent Care in Tulsa.
His mother said they tried different formulas when Nolan stopped eating, but nothing seemed to work, even feeding tubes. At about 1 year old, he weighed only 10 pounds.
Doctors in Nebraska put him on what is called total parenteral nutrition, where nutrition is delivered through a vein. He has to have the bag of nutrients with him at all times, which slows him down when he tries to play with his two older brothers, she said.
He's had 16 surgeries and is in the emergency room frequently.
Gordon said Nolan has been to children's hospitals across the Midwest and has received help from numerous doctors.
"I haven't had anything this complex before," she said.
His mother said the recovery after the transplant will take at least eight months. He will likely have to take anti-rejection medication for the rest of his life, she said.
"It will be a challenge," she said. "It's hard to even think about."
If the transplant is successful, though, his prognosis should be good. The average wait time for the transplant is about six months. They've been waiting for about six weeks, she said.
The family's insurance doesn't cover everything, including the expense of traveling to Nebraska when necessary, she said.
Nolan is like most 2-year-olds in many ways. He talks a lot and enjoys playing when he can, she said.
"His little personality helps us get through," she said. "He's a trouper for sure."
Benefit for Nolan Sensintaffar
3 p.m. Sunday
Five Oaks Lodge, 528 E. 121st St., Jenks
For more information, call 918-271-3433.
Shannon Muchmore 918-581-8378
Nolan Sensintaffar has had 16 surgeries to treat bowel and pancreas disorders. Courtesy