Julia Alexander was 8 when a brain tumor upended her young life. Her old routine of ballet classes, piano lessons and school gave way to a new reality of hospitalizations, seemingly endless medical procedures, physical and occupational therapy, trouble keeping her balance, and even for a while struggling to remember things like her multiplication tables.
“She was scared, and there were some tears when she was in a lot of pain, but she’s a tough cookie,” says her mother, Melissa Alexander. She notes that Julia’s natural resilience has blossomed under the ministrations of the child life specialists at Johns Hopkins Children’s Center, whose work with young patients is vital to preventing the trauma that can result from hospitalization and other medical interventions.
“Child life specialists make life in the hospital bearable for children,” Melissa Alexander says. “They bring the fun back into their lives.”
It is now widely recognized that children are uniquely vulnerable to long-term mental health challenges, from developmental delays to post-traumatic stress disorder, when they undergo difficult medical experiences, notes Patrice Brylske, director of child life services at the Children’s Center. Child life professionals are trained to recognize those emotional needs and intervene to meet them, explains Brylske. She oversees a staff of 25 child life specialists, who are integrated with the medical teams in every area, from oncology and the Emergency Department to cardiology and dialysis.
Julia, who is now 15, has made a lot of friends over the years among her caregivers at the Children’s Center. But there is no one she loves more than Mollie Young, who has spent the last decade as a child life specialist in pediatric radiology.
“Miss Mollie is kind, smart, beautiful and almost perfect,” Julia says. “Miss Mollie and her friends helped me get a new love for life.”
Young’s job is to prepare and shepherd children and their families through imaging procedures that are challenging even for adults. Some scans require IVs and/or catheters, and some MRI scans require children to lie completely still inside a noisy machine for more than an hour.
Young encourages her patients to discuss their fears and come up with their own coping techniques. One patient might choose to squeeze stress balls during a long MRI scan. Another patient who loves to cook created her own “recipe” book of strategies like deep breathing and listening to soothing music, to get through a hated procedure.
“We want children to feel empowered and to participate in their care,” Young says. “Each time they get through a scary procedure using coping skills they’ve chosen, it prepares them for future challenges. It’s not just about one MRI. It’s about the rest of their lives.”
Young has helped the Pediatric Radiology Division dramatically increase its use of child life-assisted MRIs — a mandatory child life evaluation for patients ages 5 to 18 that enables many children to forgo general anesthesia. In a study published in Journal of the American College of Radiology, the Hopkins team reported a more than 90 percent success rate — with “success” defined as producing great, clear images with minimal distress to the child. Child life-assisted MRIs not only use fewer resources, including time; they also help children avoid the risks and potential side effects of general anesthesia.
“Any child with a chronic illness is going to experience psychosocial impacts,” says Melissa Alexander. “A good child life program, like the one at Johns Hopkins, makes all the difference in mitigating that impact. And it helps lift some of the burden for parents.”
Read more about the impact of child life specialists in the latest issue of Hopkins Children’s Center Magazine: hopkinsmedicine.org/JHCCmagazine.