“I No Longer Felt Sick, I Always Felt Free”: Growing Up With Congenital Heart Disease and the Struggle for a Good Life—An Interpretative Phenomenological Analysis

Advancements in surgical, interventional, and intensive-care medicine have significantly increased the life expectancy of individuals born with congenital heart disease (CHD). As a result, growing numbers of affected children now reach adulthood. Despite medical progress, CHD remains a lifelong condition that influences how individuals perceive and shape their lives. This qualitative study explored ideas of a good life among 14 young adults aged 18–29 years living with CHD. Data were gathered through semi-structured phenomenological interviews and analyzed using interpretative phenomenological analysis. The pursuit of a “normal” life, characterized by equal developmental opportunities compared to peers without CHD, emerged as a central pattern. This experience was reflected in four key themes: “My Whole Life I Have to Fight for Normality,” “Being Treated Normally by Others Is Part of a Good Development,” “Normal Development Includes Lightheartedness,” and “I Need to Stand on My Own Two Feet.” These findings carry important implications for healthcare providers, particularly regarding the promotion of normality and autonomy among individuals with CHD. Patients should be supported in adopting this perspective—as should their parents, since they significantly shape the lives and well-being of patients during their formative years, playing a crucial role in laying the foundation for healthy development and a good life. At the same time, healthcare providers should avoid paternalistic attitudes that risk replicating patterns of parental overprotection. Finally, our findings point to the importance of future research exploring how gender and cultural background shape ideas of a good life with CHD.