Daniel Hutcheson’s jokes are legendary at the University of Chicago Medicine Comer Children’s Hospital. A stray dollar bill on the floor of the Pediatric Intensive Care Unit (PICU) could very well be attached to the invisible line of Daniel’s fishing pole. As soon as you grab for the money, he’ll reel you in.
“He is charming, and he’s also sarcastic in a funny way,” said his nurse, Trisha Champagne, RN. “He’s fun.”
Seeing him joke around, it’s easy to forget Daniel, now 21, has spent his life in pain. Born with a rare congenital disorder called Klippel-Trenaunay (KT) that causes his skull to grow too rapidly, he suffers from debilitating headaches, muscle weakness and other challenges that keep him mostly confined to a wheelchair.
“I always have what someone on a normal basis would think of as a shadow of a headache,” said Daniel, who has been treated at Comer Children’s for 11 years.
“Daniel was sick from the time he was born,” said his mother, Janet Hutcheson. He developed hydrocephalus as an infant and had a shunt inserted to drain the fluid.
By third grade, he weighed only 42 pounds, the bottom percentile for his age, and had frequent bouts of pneumonia and bronchitis. “He had so much pain,” remembered Janet. “You could see it in his eyes.”
It was only when he collapsed during school at age 11 that his parents, Janet and her husband Robert Hutcheson, learned the shunt had been sucking part of their son’s brain into his spinal column, producing a neurological disorder known as Chiari malformation. Daniel’s physician near the family’s home in Columbia, Kentucky, removed the shunt and replaced it with another. Still, Daniel was having a lot of pain, but the physicians in Kentucky told Janet that nothing was wrong with Daniel. Several months later, they brought Daniel to the University of Chicago to see David Frim, MD, PhD, chief of neurosurgery and the Ralph Cannon Professor of Surgery and Pediatrics.
In August 2001, Frim performed a Chiari decompression and later did several procedures to revise the shunt and alleviate the pressure in Daniel’s head. Later in 2004, Frim removed the overgrown skull bone that was crushing Daniel’s brain and discovered that Klippel-Trenaunay was the cause of the rapidly growing bone. With several more surgeries, Frim was able to remove parts of Daniel’s skull bone to keep it from crushing the brain and develop new techniques to handle the overgrowth.
In 2005, Daniel spent time in the ICU, where Heather Fagan, MD, medical director of the Pediatric Sedation Service, was part of his care team. “Being a young person who’s been hit with pretty significant obstacles, he’s just a little ray of sunshine,” Fagan said, recalling how Daniel would play tricks on the staff, like planting fake bugs in his blankets. “He is unquestionably one of the most positive people, child or adult, I have ever met.”
“Dr. Frim labeled me his ‘favorite guinea pig,’” said Daniel. In November 2009, he had an excruciating focal pain on the left side of his head, about an inch above his ear. Cranial and facial nerves run through this area, making it particularly difficult to treat with surgery. The pain wouldn’t respond to medication because of the excessive bone thickness pressing against his brain. Frim took a chance and surgically removed a piece of bone the size of the bottom of a teacup. Daniel has not experienced that pain since he woke up from the surgery. “Without Dr. Frim’s pioneering willingness to experiment,” said Janet, “Daniel probably wouldn’t be alive right now.”
Daniel is loved by everybody here. He’s got a wonderful sense of humor. For the past decade, Gozal has treated Daniel for sleep breathing problems caused by brain compression.
During his waking hours, Daniel keeps busy crocheting, creating collages and doing other crafts. Several pieces of his artwork grace the PICU.
“I’ve learned to find things that can help distract from being in pain all the time. I don’t let it take me over,” Daniel said. “As long as I look towards having faith, there’s not much that can stop me.”