Hydrocephalus Patient Faces Complex Care with Courage and Gratitude
Twenty-three-year old Kimi Sorensen had two celebrations to mark her graduation from college. First, her immediate family took her out to dinner in Chicago. She and her parents then threw a party for her second family -- the doctors, nurses and staff at the University of Chicago Medicine Comer Children's Hospital.
"I've been treated on every floor," said Kimi, who has received care here since she was a young girl.
"One of the nights when she was really sick, we were sitting in Comer and I said, 'When you graduate from college, we're going to have a party here to thank the staff,'" recalled Florence Sorensen, Kimi's mother. Kimi earned her degree in natural sciences in May 2012 and hosted the celebration at the hospital in June.
Kimi was born in South Korea with hydrocephalus, a condition in which excess fluid in the brain causes abnormally high pressure inside the head. Shortly before she was adopted, doctors implanted a shunt -- a silicone tube designed to carry excess cerebrospinal fluid away from the brain to an area of the body that can absorb the fluid. While considered permanent, surgically implanted shunts require regular evaluation and lifelong maintenance and monitoring.
For Kimi, the first adjustment came shortly after her arrival in the United States. Because the original shunt did not function properly, doctors in Chicago put in a second shunt. Kimi didn't have any other complications for 14 years. But in 2004, an infection stemming from an earring spread to a bone behind her ear. "That triggered a 'free-for-all' of problems," Florence said. "Surgery after surgery, one revision after another."
University of Chicago Medicine pediatric neurosurgeon, David Frim, MD, PhD, an expert in congenital anomalies of the nervous system, performed several of those surgeries. "In addition to the issues from the bone infection, Kimi's brain was growing and changing, which brought about other concerns," he said.
Frim used a variety of approaches to address the complications, including changing valves and rerouting the shunt so it could be adjusted externally with a magnetic device. "There were challenges, but advances in shunt technology during those years supported and improved her treatment," he explained.
Although her care was often complex, Kimi and her parents say they appreciated how Frim patiently explained what he was going to do. "He kept me involved and helped me understand my condition and my treatment," Kimi said. Florence added: "He was always accessible. We felt like we had an ally."
The Sorensen family also praised the nursing care that Kimi received during her hospital stays. Florence remembers a night when she brought her daughter to the hospital with terrible head pain. Neurosurgical nurse, Amanda Johnson, RN, APN, raced to Kimi's bedside, measured the pressure in her head and then rushed her to the operating room for surgery. "It was her quick work and knowledge that made the difference," Florence said. "The moment we needed her, Amanda was there. And that's the way all the nurses have been all these years."
Kimi hopes her connection with the University of Chicago Medicine continues in another way. "One day, I would like to be a neurological nurse there," she said. "When I think about all the nurses at Comer, that's the kind of relationship I want to have with patients. When I walk in the hallways, they always know me, and I think that's really cool."