Seven-year-old Maya fills a plastic syringe with purple paint and aims it at a white poster on the wall that reads, “In the hospital, I feel … .”
“When do you feel safe in the hospital?” Johns Hopkins All Children’s Hospital Child Life specialist Carli Fischer, M.S., CCLS asks Maya.
“When I’m safe in my room,” Maya replies.
Purple stands for safe. It’s an activity that correlates paint colors with feelings and is one of many activities that Fischer has created for Maya to support her during her hospitalization.
“In this activity, Maya was able to talk about different parts of her hospitalization that have made her feel emotions, like sad, happy, angry, grateful and worried,” explains Fischer.
Fischer is a Child Life specialist in the cardiovascular intensive care unit (CVICU), and there are others assigned to various units and departments across the hospital. Their focus is to create a sense of normalcy in the hospital setting to be an advocate for their patients. They support their patients’ mental and emotional well-being while also helping them to understand their diagnosis and procedures at an age-appropriate level, often through medical play.
“Carli is my number one, she’s like a patient advocate,” says Maya’s father, Brent. “You’ve got to find a new normal and if you don’t have someone like Carli, it’s difficult. She goes above and beyond.”
When Brent’s phone rings with a call from the CVICU, his heart races, and he jumps to answer it. He and his wife, Valerie, are patiently waiting for the news that a heart is available for her necessary transplant.
“Today could be the day, or it could be another six months,” Brent says. “There are a lot of emotions because we’ve been here so long.”
Maya has already been at Johns Hopkins All Children’s for the past six months — pushing 200 days. Long stays at the hospital, like Maya’s, make Fischer’s role a critical one. It takes a lot of education and training to be a qualified and successful Child Life specialist.
“My background is in child development and psychology, so I received an undergraduate and graduate degree,” Fischer says. “I took classes on topics such as therapeutic benefits of play and grief and bereavement, and I also completed clinical hours at various children’s hospitals to get hands-on experience.”
It has enabled her to tailor a unique Child Life plan just for Maya’s personal journey. Over the course of her hospitalization, Fischer advocated for Maya’s brother to have a small wedding ceremony in the hospital garden so she could be his flower girl, and arranged a walk-by birthday celebration on Maya’s birthday so Maya was able to watch from a hospital window.
She also helped Maya to understand that she is waiting for a heart transplant and explained what that means in developmentally appropriate terms. She used medical play to support Maya in processing and expressing her emotions regarding extended hospitalizations and has done many therapeutic activities to help provide Maya an outlet for emotions of frustration and anger such as drawing things that make her mad, then put the large paper on bubble wrap and stomping on it.
“Carli always goes to bat for us to do things for us,” Brent says. “It’s not just the medicine — the mental toll is the hardest thing. Carli gives you the motivation to charge forward.”
And that motivates Fischer to continue being the best Child Life specialist she can be.
“My favorite part about being a Child Life specialist is helping kids to do really strong and brave things that they never thought they could,” Fischer says. “I love helping them develop coping skills, so for Maya, she was really fearful of dressing changes in the beginning, which are specific bandages that block germs and keep her catheter site dry and clean, and she rocks it now.”
And Maya’s favorite thing about her relationship with Fischer?
"Getting my morning hugs," Maya says.
Morning hugs that will continue until Brent gets that phone call and Maya goes home with a new heart, and new start at life.