Living with congenital heart disease and heart failure: a lifetime of challenges and resilience

Congenital heart disease presents lifelong medical and psychosocial challenges, requiring ongoing management, adaptation and resilience. This patient perspective explores the experience of living with Tetralogy of Fallot and a bicuspid aortic valve, focusing on heart failure, the often-invisible nature of congenital heart disease as a disability, and its impact on health-related quality of life.

A first-person narrative is integrated with current research evidence to highlight challenges including complex healthcare navigation, financial and employment-related burden, and the importance of individualised patient-centred care. This article advocates for a more proactive approach to congenital heart disease management, emphasising the need for tailored health-related quality-of-life assessments, greater professional awareness of psychosocial needs, ongoing specialist education for healthcare professionals, and stronger system-level support to improve long-term outcomes for adults living with congenital heart disease. It highlights the importance of holistic, multidisciplinary care that extends beyond survival to prioritise quality of life.