With his mischievous laugh, vivid arsenal of imaginative stories and inquisitive, chatty nature, Byron Hines has won himself a spot on many a nurses’ favorite-patient list. He’s whooped every volunteer who has dared to compete against him in a game of Sorry! or Monopoly, and on his good days, he’s quite the force to keep up with.
Underneath Byron’s camouflage pajamas, there is a chest port on his torso that frustratingly blocks the spot where the butt of his hunting rifle should rest. He doesn’t watch clocks, opting instead for 24-hour Animal Planet to pass the time. And when he hits his head on his hospital bed in a post-board game victory celebration, it hurts him more than normal because there’s less padding there due to his illness.
Life hasn’t been normal for the 8-year-old since he was diagnosed with sarcoma, a soft cancerous tumor, in December 2005. Every time he developed a fever, it was a mandatory overnight stay in one of the Children’s Hospital rooms – his mother, Shirley Hines, swears they’ve occupied every one – and he was in Columbia every three weeks for another round of chemotherapy. But thanks to a special program at University of Missouri Health Care’s Children’s Hospital called Child Life, his countless visits have been a lot easier than expected.
“Hospitals are unfamiliar and uncomfortable for children to be in,” said Melissa Pulis, Child Life manager at Children’s Mercy Hospital in Kansas City and member of the Midwest Child Life Networking Group. “Making the hospital more of a place that is welcoming, fun, enjoyable and understandable really helps children cope better with their medical treatment.”
At University Hospital, four Child Life specialists use any imaginable method to do just that. Sometimes referred to as the “surrogate mothers” of the hospital, the team of child development experts blows bubbles to distract kids from procedures, uses medical dolls to show exactly what will happen during basic medical procedures and plans holiday and community events to break up the monotony of patient stays.
“I am a teacher, a therapist, I do different little things,” Child Life Specialist Courtney Dill said. “I would hope to make somebody’s stay as normal as possible.”
Coping with the hospital environment was the initial concern that launched the Child Life program, now in its third decade of service. After numerous national studies completed in the early and mid-20th century demonstrated marked distress within young hospital patients, child care advocates started lobbying hospitals around the country to develop programs for extra therapy and education.
By the early 1970s, University Hospital had signed on and created a one-person play program designed to distract children from their boredom. In its first few years, Child Life remained somewhat day-care oriented. As medicine advanced and support increased, the program became more expansive and developed.
The Children’s Miracle Network eventually took over all funding, and Child Life spread across the two floors of the Children’s Hospital and occasionally into operating, intensive care and emergency rooms – anywhere children need assistance.
“At first, we would just be found in the playroom; it was very recreational,” said LeAnn Reeder, a 16-year veteran of the Child Life team.
Reeder remembers when she would have to watch several nurses lie on top of a child to hold him down for IV insertions. Now, she has learned to use the Child Life tenet of “medical play” to demonstrate every step of the medical procedures patients will experience.
“I tell them everything. I have a doll and do exactly everything (in the procedure)” Reeder said. “I explain to students, ‘because I’ve done this before, this is what the nurses will do.’”
Bringing new patients out of the dark about what’s happening to them reduces the stress that hospitals can create. For longer-term chronic patients, developing a pattern by keeping procedures the same adds comfort and normalcy to their otherwise rigorous and painful treatment schedules. Byron’s routine includes every nurse accessing his chest port the same way and Dill or another Child Life specialist reading him “I Spy” books or putting on a movie to distract him.
“The largest fear often is the unknown,” Pulis said. “Children need control and choices, and they need to understand the reasons why treatment is needed. If we don’t tell them what we are doing, their anxiety is increased, they feel out of control, they won’t cooperate and they won’t trust us.”
This sort of preparation also helps the medical staff by reducing struggles and avoiding unnecessary sedation.
“The first week here I saw not just one but several times where an IV start went very smoothly with little if no tears,” said Kelly Brooks, a pediatric nurse at University Hospital. “Once, a child even smiled during the whole procedure.”
Child Life often acts as a liaison for children and their parents, whose knowledge of medical terms is often limited to an episode of “Grey’s Anatomy” or “ER.” Child Life specialists, who are versed in child development, use chart notes and conversations with nurses and doctors to learn about a child’s health before de-jargonizing the situation.
Child-friendly terms such as “hospital pajamas,” “special lights” and “pokes” replace scrubs, lasers and needle insertions in the Child Life vocabulary. During preparations, they address all five senses to ensure that a child isn’t surprised by a sound or smell, and they invest the time to answer all the family’s questions.
Child life specialists “are programmed to always explain things and always ask questions. They try to do it at their level,” said Dorothy Martin, a pediatric nurse in her 33rd year at University Hospital who admits she’d feel lost without the help the program provides.
The family centered care was part of Child Life that proved especially helpful to Shirley Hines. The mother from Novelty raised seven other children without any serious health problems, so navigating her son’s cancer treatments has been a significant learning experience.
“A big role we play is as advocates for parents,” said Nora Hager, the Child Life program coordinator at MU. “Many of them don’t understand what’s happening, and some have never been in the hospital. Events happen in rapid sequence, and health care providers step in and speak in Latin (medical) terms. Sometimes providing support can be as simple as going to a parent and answering any questions they have.”
Specialists like Dill and Reeder have helped Byron learn the reason for every beep on his machines, and they’ve taught Shirley Hines lots of things she can do for Byron on her own.
That parental support also translates into giving parents a half-hour break for dinner or a shower, providing a limitless supply of DVDs and games for those who had to rush to the hospital, telling families that Child Life will not add to their gas and hospital bills, showing restless siblings around the playroom and hosting memorial services and creating special handprint molds to commemorate a life lost at the hospital.
For Shirley Hines, the days between her son’s diagnosis and the completion of his chemotherapy in late December have been a whirlwind that she has learned to approach one treatment round at a time.
But she says for Byron, who spent more than a year battling cancer, the hospital has become a normal part of life.