Posted on May 10,2018
Child Life specialists help to change the experience for children who are hospitalized, turning fear into courage, and clearing a path for wellness.
9:30 a.m: Colorful Connection
The Department of Radiology at Johns Hopkins All Children’s Hospital is humming with activity. Families are filing into the waiting area. Clinical staff are shepherding young patients through CT scans, X-rays and MRIs.
But a room down the hall has taken on a decidedly different quality than all the others. Inside, it is nightclub dark, except for a glowing kaleidoscope of colors moving hypnotically at the room’s center.
Two figures are lying on a mat on the floor, their heads tilted together, as they experience the pulsing hues of neon pink, blue, red and green.
Child Life specialist Renee Savic is using a tool called the Vecta, a mobile sensory station, to help Nathan, a young patient diagnosed with autism, cope with the anxiety of having procedures done.
Patients on the autism spectrum sometimes have trouble with new people and new situations. Nathan has particular trouble with things touching his skin. The Vecta, with its bubble column, aromatherapy and colorful fiber-optic noodles, has been a soothing and effective therapy for him.
“Having that calming environment and playtime before procedures has given Nathan a chance to feel safe, secure and calm in the environment,” Savic says.
Savic has experienced the difference where it counts. When she has been by Nathan’s side to coach him through recent procedures, he has been a different child—more focused, less traumatized.
“It’s sometimes miraculous to see what a Child Life specialist can help you accomplish,” says Director of Radiology Kevin Potthast, M.D. “Renee makes us better than we were before.”
It can also be miraculous to see the relationships that form between the Child Life specialist and patient. Now, when Nathan is scheduled to come to the hospital, this child who typically has trouble being touched greets Renee with a bear hug so big and heartfelt that it almost takes her breath away.
11:30 a.m: Blood Soup
Seven-year-old Ashley is sitting in a small exam room in the Hematology/Oncology Clinic with her eyes cast downward as she waits for her chemotherapy treatment.
Just days ago, she was diagnosed with leukemia. Ashley's mom is concerned that her daughter doesn’t understand what’s happening, and she’s not sure how to explain this complicated illness to her child.
Child Life specialist Dara Jackson has joined her in the room. She gently poses a question.
“Do you know why you’re here, Ashley?”
The little girl replies, her words barely audible.
“I know my blood is sick.”
The Child Life team has a variety of options to make the medical experience less scary for kids. Children not only love to play—they learn and process through play. So most of the team's tools come in the form of fun—often, toys and games. From dolls that help demonstrate medical procedures to iPads with special apps, to games that help with trust-building, to art that educates—the goal is to meet patients where they are, and to change their experience for the better.
But what to do for Ashley?
Dara has an idea that she already has run by Ashley's mom.
“I know what we can do,” ventures Dara. “Let’s make blood soup!”
Now Dara has Ashley’s full attention. Her eyes grow big and round.
Dara begins to pull out the recipe ingredients: Marshmallows, red hot candies, jelly beans, rice and Karo syrup.
Dara explains that the body is made up of cells, and that all the cells have a job. The cells in her blood have a job too.
She dumps a scoop of red hot candies into a clear plastic bag.
“These are the red cells. Do you know what their job is? They carry nutrients and energy throughout the body,” Dara explains.
Then, she pulls out the marshmallows. “These are the fighter cells. Their job is to fight off infections.”
Ashley is intrigued as she helps add the marshmallows into the "blood soup" they’re making. Dara and Ashley then add rice to represent the platelets. “They are like the body’s ‘Band-Aids,’ Dara tells her. “They help us to stop bleeding.”
Then things get really gooey, as Dara adds the Karo syrup. “This is the ‘plasma’ that helps your cells move around.”
Finally, Dara pulls out the jelly beans, and puts them into the bag.
“Do you know what these jelly beans are? These are the lazy cells, or sick cells. They don’t have a job that helps the body,” Dara explains. “They are the leukemia cells. They make it hard for all the other cells to do their job.”
So how to get rid of those jelly beans that are making it hard for the other cells to do their thing?
“Medicine!” Ashley says.
A light seems to have gone on for this 7-year-old. This is the essence of what Child Life specialists do. They bring comfort and understanding by sharing with the child in their first language—the language of “play.”
“We have to remember that they’re a child first,” Child Life Director Kristin Maier says.
“You can’t heal a child one-dimensionally. If you treat a child like an adult, you’re missing a huge piece of the healing.”
Ashley is now engaged, laughing, and chatty. Ready to start blasting those jelly beans to kingdom come.
2 p.m: Honoring Choices
Leah Frohnerath has spent the last two decades as a Child Life specialist. Still, some things never get easier.
She’s spending time with 15-year-old Alexis today on floor 7 South—and they are engaged in some very emotional work.
Leah met Alexis about a year ago. He had been diagnosed with cancer and was spending quite a bit of time in the hospital. Alexis consistently beat Leah at Mario Kart Wii, much to his delight. They chatted a lot. Leah learned of his passion for art and photography, and of his love for his mom, a single parent, and siblings.
One day, Alexis was especially quiet. Leah thought of the Shel Silverstein poem, Whatif, a chronicle of some of the things kids worry about. It begins like this:
Last night, while I lay thinking here,
some Whatifs crawled inside my ear
and pranced and partied all night long
and sang their same old Whatif song:
Leah wondered if Alexis might have some ‘Whatifs.’
“I wonder if I’ll die,” he said. “And what that would be like.”
Alexis shared with Leah that his treatments weren’t going well. The teenager told her that it was difficult to talk about this with family or friends.
“What patients often need is somebody to validate their thoughts and their fears,” Leah says. “When you’re going through stress and grief, you don’t want to be told ‘Don’t worry about it.’ You want somebody to listen.”
Leah listened. She was an advocate. A friend.
On this day, with his mom’s blessing, Leah and Alexis are working on his "end of life" plans. He is grateful to be given some choices, to have some control over things, from medical care questions, to spiritual thoughts and wishes, to how he wants to be remembered.
Leah writes the answers down when Alexis is too tired to write. There are shared tears, but laughter too. He will leave his iPod to his brother who, he claims with a grin, "was always trying to steal it, anyway."
On the anniversary of the first birthday after his passing, Alexis wants his loved ones to have chocolate cake and vanilla ice cream. His favorite. This is a celebration of life, after all.
4:30 pm: Fearless
It’s been a hectic day for Renee, the Child Life specialist who began her day with Nathan, the patient who has autism. She has seen so many kids today that she has lost count, but now she’s fully present for the 6-year-old in front of her.
Claire is a little slip of a girl. She’s not growing and developing at the rate she should be. Claire has had far more invasive procedures than a little girl should have to have. Until she met Renee, she was not handling it well.
Renee has been helping to reduce her anxiety through medical play.
As they sit together on the floor in a colorful playroom, Claire’s eyes are glued to the large puppet in Renee’s lap, a doll that is literally bigger than Claire is. Renee is helping her to prepare mentally for an upcoming MRI with sedation.
In a tiny doll-like voice, as if the puppet were talking, Renee says, “But I’m scared!”
Then, in her own voice, she prompts Claire gently. “Can you maybe take her hand and comfort her?”
Claire reaches her little hand out to take the puppet doll’s hand, and tucks it close to her body. In the act of comforting the puppet, she is learning to comfort and soothe herself.
Thanks to a Child Life specialist, Claire is finding her courage.