Child Life Specialist Helps Little Ones Cope with Hospital Stay

Tenley Johnson lay quietly in her bed in the Pediatric Intensive Care Unit at the Hoops Family Children’s Hospital (HFCH) at Cabell Huntington Hospital. The room is filled with balloons and stuffed animals that would put a smile on any child’s face. But today, what made Tinley light up wasn’t a toy or video game. It was a visit from Stephanie Cape, certified child life specialist at HFCH.

“I love Stephanie to come into my room and play with me,” said the four-year-old with a bright smile. Diagnosed with Spinal Muscular Atrophy Type 1, Tenley makes frequent visits to the hospital. On this day, she was fighting off a virus.

“If I can help bring calm, make the machines fade away and help make a child feel comfortable in a not-so-comfortable environment, then I’m doing my job,” said Cape.

Child life specialists are trained professionals with expertise in helping children and their families understand and cope with a child's illness or injury and related medical treatment. They provide emotional support for families, and encourage optimum development of children facing challenges related to their health. This includes teaching children about and preparing them for medical tests and procedures, like going to the operating room.

With a strong background in child development and psychology, Cape promotes effective coping through play, preparation, education and self-expression activities.

“Every day is completely different,” said Cape who begins each day learning her patients’ needs. “The nurses update me on procedures that are scheduled, children who are having a difficult time coping and which patients might need a little extra help accomplishing certain goals in order to go home. From there I develop my strategy for the day because each child’s needs are different.”

Holdyn Keefer was diagnosed with acute lymphoblastic leukemia, a cancer of the blood and bone marrow. This form of cancer progresses quickly if it is not treated. At the age of four, Holdyn began receiving aggressive chemotherapy and spent weeks at a time in the Pediatric Unit at HFCH.

“He would have good days and bad days,” explained his mother, Sarah. “But his bad days were always short-lived when Stephanie would arrive. She took a lot of time to get to know him and understand his individual needs. By doing that, she often made him forget that he was in a hospital or that he was sick.”

Because a child’s well-being depends on the support of the family, Cape also provides information, support and guidance to parents, siblings and other family members.

“By getting a child to a place of calm, it allows the parents to relax,” Cape said. “Then I spend time with the parents and caregivers so they can learn how to help provide calm when I’m not around.”

“The techniques Stephanie used to calm Holdyn she taught us. That way we could continue to mimic those patterns and make him feel less stressed when she wasn’t available or even when we were home,” Keefer said. “Our situation was difficult and scary, but having Stephanie there to soothe all of us made a huge difference. Holdyn finished his chemotherapy in September and is doing well, but he still asks to visit Stephanie.”

Tinley and Holdyn are only two of the more than 3,000 children Cape works with on a yearly basis at the Hoops Family Children’s Hospital. But not all days does she feel successful.

“I love my job,” said Cape. “But there are days that are difficult. When a child’s situation isn’t expected to improve, that’s never an easy thing to handle. In the moment, I’m very good at staying focused and doing what I need to do. But then I have to deal with my own feelings and it’s not easy.”

Cape said she deals with her own emotions and frustrations through exercise, eating well and surrounding herself with a loving support system.

“It’s important to have someone you can talk to, that can understand that this is something that is difficult.” she said. “I get very close to my patients and many of them treat me like I’m part of their family. Good and bad days, there is no place I’d rather be than in this position, at this hospital, doing what I do.”

For more information about the Hoops Family Children’s Hospital at Cabell Huntington Hospital, visit us on the web at www.hoopschildrens.org.