Ten years ago, the pediatric surgery team at Ann & Robert H. Lurie Children’s Hospital of Chicago, developed CHAAMPS camp, a camp that treats children with Colorectal conditions, Hirschsprung’s disease, Anorectal malformations and Associated spinal cord anomalies, Managed by the Division of Pediatric Surgery. Through close follow-ups with their patients, the team recognized there was a need for a more comprehensive and consistent bowel management treatment program. “There are so many other factors impacted by these diagnoses,” says camp director and Advanced Practice Nurse, Beth Nanney, APN. “Our team understands the impact that these conditions have on the patients’ daily lives. Our goal is to optimize their quality of life.”
The CHAAMPS program takes an individualized approach to a child’s medical condition. Treatment plans are developed to fit the child’s personal goals and lifestyle. The program is designed to deliver comprehensive, interdisciplinary treatment for children with severe cases of fecal incontinence and chronic constipation from initial intervention to long-term management.
The diverse group of staff at CHAAMPS camp works together to develop the patients’ treatment plans. The team includes Dr. Mary Beth Madonna, a pediatric surgeon and Dr. Elizabeth Yerkes, a urologist, as well as advanced practice nurses, a social worker, a child life specialist and a dietician. “We work together closely during the week and we all just love it,” says Beth. “In seeing the kids succeed, we all win.”
Patients come from all over, including Hawaii, Texas, and New Jersey, to partake in our bowel management program and often to participate in the unique week-long program. This summer, seven-year old Hannah and her mother, Tandy, traveled to CHAAMPS camp from Mississippi. Hannah has dealt with severe constipation since birth and was growing frustrated feeling like she had tried everything. Having felt like they were out of options, Hannah’s doctors in Mississippi told Tandy to research a program for Hannah and they’d provide the referral. After much consideration, Tandy landed on Lurie Children’s and brought Hannah to Chicago for her first visit in the summer of 2016.
Hannah underwent a series of testing and the pediatric surgery team ruled out Hirschsprung’s disease and Anorectal malformations. The team discovered Hannah was actually suffering from dysmotility. Tandy reflects, “Last year we did not attend camp but came to the hospital and learned Hannah’s colon was in crisis. They provided us with a CHAAMPS plan to follow for a year so that we would be able to attend the summer 2017 program.” During this initial visit, Beth told Tandy, “We’re going to be Hannah’s tummy team. We understand the challenges she’s facing.”
CHAAMPS camp provides participants with educational discussions, clinical evaluations, nutritional support, and personal counseling. The education is empowering to both the parents and children attending. During the down time, the parents and children socialize with one another and are able to form a sincere support system. Hannah was able to meet other kids with similar conditions and the bonds they built helped increase Hannah’s confidence. Hannah and her mother speak regularly with the other children and parents from camp.
CHAAMPS camp goes beyond providing medical care and looks to improve the children’s social, emotional, and psycho-social states. The goal of CHAAMPS camp is for all patients to participate in social activities while having the confidence of being accident free. Whether their goal is to join a sports team, attend a sleepover, or simply to play at recess without worry, the CHAAMPS team creates individualized treatment plans to help each child improve their quality of life. “What I love most about the team at Lurie Children’s is that they’re straight-forward with us,” says Tandy. “They provide us with immense education, aim to build trust, and keep in continuous contact.”
During the week, children fill out a booklet designed to help them open up and share what positive and negative moments they have been experiencing at camp. Getting the kids talking about their health conditions and goals allows the team to better understand the patient’s motivations, frustrations, and limitations. When the week is done, participants take a quality of life survey to provide feedback for future program adjustments.
Patient care extends after the program, including scheduled follow-ups monthly and then yearly through the CHAAMPS Continuity Clinic at Lurie Children’s. The clinic consists of routine appointments where patients and families work with Dr. Madonna and an advanced practice nurse on a treatment plan to help ensure long-term social continence. Last year alone there were over 500 office visits to the clinic.
Beth, Tandy, and Dr. Madonna hope to spread the word on CHAAMPS camp, as it is a truly valuable resource for families who are struggling to find suitable treatment for their children struggling with colorectal conditions such as, Hirschsprung’s disease, Anorectal malformations, colonic motility disorders, spina bifida or severe refractory constipation not amenable to usual treatment.