The many months St. Louis–resident Kailon Lewis awaited a kidney transplant were filled with some discomfort, lots of life disruptions and plenty of boredom. The 11-year-old spent more than three hours at a time, three times a week, mostly alone at a dialysis clinic, while his mom also cared for five of Kailon’s siblings.
Not surprisingly, Kailon was always happy when his mentor, Mike Anderson, stopped by the facility to hang out. Anderson, a second-year student at the Washington University School of Medicine, is not just Kailon’s mentor but also one of the student coordinators for a decade-old program, the Pediatric Outreach Program. Although it’s similar to the national mentoring program Big Brothers Big Sisters, the Pediatric Outreach Program focuses on offering attention and support to children with chronic illnesses.
Anderson arrived at the School of Medicine in 2009 already having youth outreach experience. As an undergraduate in Arizona, he volunteered for a conflict resolution program at a local elementary school, which led him to get involved in the local Big Brothers Big Sisters program.
“Once I started, I knew I would be involved with youth outreach for the foreseeable future,” says Anderson, whose “little brother” from Arizona even flew to St. Louis to visit him at medical school. “Big Brothers Big Sisters was a powerful experience. It’s like a fun addiction — one that helps others.”
During his first semester in medical school, Anderson heard about the Pediatric Outreach Program and immediately saw how it brought together many of his interests. He subsequently signed up and was matched with Kailon.
“When a kid has a chronic illness, it affects everyone in the family,” Anderson says. “A one-on-one matching program gives kids the opportunity to have a caring, listening adult outside of the family. It also gives kids some control over a very complex situation in their lives. We are not their medical advisers, but we can be a bridge to their medical care.”
While some of the medical students who volunteer already have had experiences with serious or chronic illnesses — their own experiences, or ones with a family member or friend — others have never had that exposure.
“It’s really important to gain perspective on what a chronic illness can do — not just to the body but to the mind and spirit, and to the whole family,” says Anderson, whose own mother fought cancer in 2006 and 2007. “The kids can help us understand what it’s like to live with an illness that isn’t going away. That’s a critical part of the program — helping us become competent, creative, caring physicians. They are our teachers in such important ways.”
The program’s faculty adviser is Alexis Elward, MD, an associate professor of pediatrics. She says the first two years of medical school are so textbook- and science-intensive that it’s easy to lose perspective on how illnesses impact whole lives.
“It’s amazing that there is so much interest on the part of the students,” says Elward, who did her residency at St. Louis Children’s Hospital in 1994 and joined the medical school faculty in 2001. “Students are so busy with medical school, but this is something that can inspire them and bring in the human element as they slog through course material.”
Elward adds that these types of hands-on experiences also impact students’ decisions about which specialty area to pursue.
“These first experiences in medical school are really critical and informative for choosing a career path that fits your personality,” Elward says. “Students need to understand the clinical and social aspects of medicine, and to keep in mind the overall goal: that there are real people we’re taking care of at the end of this.”
Elward hopes the Pediatric Outreach Program will help make students better doctors, helping them understand “all the factors and complexities as they put together treatment plans.”
The program’s biggest challenge, surprisingly, is not recruiting busy medical students but recruiting patients and their families. Elward says they had been relying on pamphlets and referrals through the program’s connections with social workers at St. Louis Children’s Hospital. But to help make more direct connections, Anderson and other medical students have begun visiting with families in outpatient treatment settings, like dialysis units. Children with sickle cell disease were also targeted for the first time last year, as were children awaiting organ transplants, expanding the list of other chronic childhood diseases — from diabetes and HIV infection to cancers and neurological disorders. In 2010–11, eight children were identified and matched with medical students.
Ellen Merrick, a second-year medical student in the Medical Scientist Training Program, helped Anderson run the program during the 2010–11 academic year. Merrick, from Alexandria, Va., says it’s important to understand the complexities of life for these families.
“Being involved in the program gives us the opportunity to see the disease and how it affects the whole family, not just the child’s health,” Merrick says. “Some treatment plans just can’t be managed because they’re too complicated, but these aren’t the things you typically learn about from a textbook.”
Just consider, for example, the siblings of chronically ill children. They often feel neglected and have behavior issues as a result, which is why they are also eligible to be matched through the Pediatric Outreach Program.
“I was talking to one of the mothers who was very appreciative that we had something for her other children, something that allowed the focus to be about them,” Merrick says.
One-on-one interactions between the children and medical students include everything from helping with homework to playing Wii and going on bowling or ice cream outings. In addition, the Pediatric Outreach Program organizes group events, like a picnic at Forest Park during the 2010 Great Forest Park Balloon Race.
“More than anything, I just try to give Kailon a chance to be a kid,” Anderson says. “The emotional attachment can be heartrending at times. We’re helping kids have experiences they might not otherwise have, and they’re helping us by sharing their perspective. It’s very demanding, but it’s worth it.”
Kristin Tennant is a freelance writer based in Urbana, Ill.