Alexandra Curry, DO
With My Heart 2.0, we plan to educate and create a community for adolescents with congenital heart disease (CHD); a place to laugh, play and grow with individuals who understand what it’s like to grow up with a transformed, upgraded heart (hence My Heart 2.0). CHD occurs in 1 out of every 100 live births, and with improving medicine and surgeries, these babies are thriving and many are now adolescents. Adolescence is a difficult transition and growing period. Adding a chronic disease in the mix makes it even more difficult. Research shows that there is an increased risk of new or an exacerbation of an already existing psychological disorder in adolescents in chronic diseases. There is an increased incidence of mood and anxiety disorders among adolescents with CHD. In addition, more complex heart disease correlates with a higher risk of mental illness. The outcomes this program is dedicated to increasing education, understanding of their disease while improving mental health outcomes in adolescents with CHD. There are currently several communities for parents of children with CHD, even for adults with CHD, but the opportunities for adolescents to connect with others who understand them are few, especially in the wake of a global pandemic. Bottom line: there aren’t enough support groups for this community with CHD. Our plan with My Heart 2.0 is to meet once every two weeks over zoom. We will give participants two surveys before their first meeting, and then again at 3 months, 6 months and 12 months to track the progress. The first survey is the validated Leuven Knowledge Questionnaire for Congenital Heart Disease to assess the frequency of patients’ knowledge about their disease, it’s treatment, and about preventative measures, the second is our survey that we are working to validate. At the beginning of meetings, we will play games, win prizes, and create community. The last 10 minutes, we will talk about an important topic related to CHD. For example if the topic is endocarditis, we will briefly discuss what it is, why it’s important, make sure participants are maintaining good oral hygiene, and provide supplies if needed. Other topics include discussing mental health, why cardiologists do procedures like echos or stress tests, and what the anatomy of their specific heart defect looks like. My Heart 2.0 seeks to empower adolescents to understand and own their disease, promote mental health in this vulnerable population, and help them understand the importance of preventative medicine, especially with their pre-existing condition. Community is more important now than ever, as we’re meant for human connection, but have been forced to be isolated secondary to the devastating COVID-19 pandemic. Our zoom meetings will provide deeply needed community and friendship. The CATCH grant will enable us to implement this program which we have been working on this past year. It will enable our program to have a bigger impact, reach more adolescents, and provide them with a richer experience.