Jennifer Cortes, a member of a patient advocacy group for adults with congenital heart defects, is on a mission to let others in similar situations know that they are not alone. As the co-chair of the patient and family advisory board of the Adult Congenital Heart Association, she encourages individuals to seek the support and resources they need to navigate the challenges of living with a congenital heart defect.
In her efforts to further support the congenital heart defect community, Cortes has joined a registry of patients aimed at advancing research to improve the lives of adults who underwent surgical, therapeutic, and interventional procedures as children. This registry, known as the Congenital Heart Initiative, focuses on addressing the unique cardiac anatomy and repair needs of adults who were born with congenital heart defects.
According to a recent report in JAMA Network Open, the Washington Adult Congenital Heart Program at Children’s National Hospital is leading the charge in providing specialized care for this growing population of adult survivors. The challenge lies in transitioning patients from pediatric to adult care seamlessly, as many healthcare providers lack the training to cater to the specific needs of adult congenital heart disease patients.
Congenital heart defects, affecting 9 out of every 1,000 live births worldwide, are the most common birth defects. While advancements in medical technology have significantly improved survival rates, adults with congenital heart defects face a range of health issues as they age, including heart rhythm disorders, heart failure, and neurocognitive problems.
As the population of adult survivors continues to grow, the need for specialized care and ongoing research becomes increasingly vital. The Congenital Heart Initiative’s registry data has highlighted the prevalence of health conditions among adult patients, with heart rhythm disorders and mood disorders being common concerns. Despite these challenges, the majority of participants reported a high quality of life, underscoring the importance of comprehensive care and support.
For Cortes, who was born with multiple congenital heart defects and underwent surgery as a child, the journey to finding appropriate care as an adult has been a rollercoaster. After years of sporadic care, she finally connected with an adult congenital heart disease clinic that provided her with essential guidance on family planning and lifestyle changes. Despite facing financial obstacles to accessing specialized care, Cortes remains dedicated to advocating for herself and others in the congenital heart defect community.
Through her involvement in the Adult Congenital Heart Association and the Congenital Heart Initiative, Cortes continues to champion the importance of research and specialized care for adult survivors. Her story serves as a reminder of the resilience and strength of individuals living with congenital heart defects, and the ongoing need for support and resources to navigate the complexities of their condition.
