Roni Jacobsen, MD
Children and adolescents with Congenital Heart Disease (CHD) report decreased health-related quality of life (HRQOL) compared to their age-matched peers, particularly in the areas of physical, psychosocial, and social function. The concept of HRQOL in this population is complex and likely multifactorial, but studies have shown it may be modifiable. In a pilot study in children 8 to 12 years old with Fontan physiology, we demonstrated improvement in exercise capacity and multiple domains of parent-proxy report HRQOL after completion of an innovative 12-week home-based physical activity program. Although there were no measurable differences in HRQOL reported by the children, their attitudes and approach to the program and each other significantly changed from the first to the last in. In the presence of their peers, it was easily visible and an empowering transformation to watch over the course of the intervention.
Summer camp provides a similar opportunity for children and adolescents to become part of a community. This is especially true for those with chronic medical conditions. I have had the opportunity to observe the benefits of summer camp for children and adolescents with chronic medical conditions firsthand, from the viewpoint of a patient, counselor, and physician. At age 8, I was diagnosed with acute lymphoblastic leukemia (ALL). It was difficult to share the changes I experienced physically, emotionally, and mentally with my friends and family. Illness as a child can be a very isolating experience. When my parents were approached with the idea of me attending a camp for children with cancer and blood-related disorders, the fear and hesitancy they and I felt was paralyzing. However, after thoughtful research and discussion, I attended camp the following summer. I recall feeling both terrified and exhilarated the first day. As hard as it was to leave my parents, I quickly realized I wasn’t the only one missing my hair, taking medications, or needing to rest to recuperate during typical childhood activities. Camp provided a safe place for me to just be me and openly share my life with others with similar struggles. After that year, camp became one of my top priorities of my summer plans, initially as a camper, and then as a counselor. Thus, when I heard about the opportunity to be a volunteer physician at a camp for patients with CHD, I was excited about the opportunity to be a part of it.
Camp Odayin (www.campodayin.org) was founded in 2001 by Sara Meslow, a CHD patient and amazing individual. Sara had an implantable cardioverter defibrillator (ICD) placed in January 2000. This experience motivated Sara to volunteer at a camp in California for children with CHD. Upon returning home to Minnesota, she was also motivated to find a similar opportunity closer to home, but soon realized there was no such camping experience available to support children living with CHD in the Midwest. However, Sara’s commitment to help provide positive life-changing experiences for children with CHD persisted. With the support of many people and organizations, Camp Odayin became a reality in the summer of 2002, including 53 campers from 6 states. Since that time, the camp has undergone tremendous growth and expansion, particularly to meet the ongoing needs of their increasing complex and aging participants. In 2015, Camp Odayin served over 700 people from 12 states through their Resident Camp, Day Camp, Family Camp, Winter Camp, and Young Adult Retreat. Camp Odayin also provides a scholarship program, as well as additional opportunities for their patients and families to connect throughout the year.
To read the full article, please go to the June 2016 Issue of CCT.