Stories from the Heart: Biosocial Narratives of Adults with Complex Congenital Heart Disease

Kaitlin Kimmel : Interdisciplinary Studies; Concentration: Medical Anthropology and Disability Studies

Mentor: Susan Schweik, English and Disability Studies

In the 1980s, newborns with complex congenital heart disease (CCHD) began to survive into adulthood in larger numbers than ever before due to advances in cardiothoracic surgery and cardiovascular medicine. Growing up, many were told they would either be “fixed,” once they reached adulthood, they would die in childhood, or that their prognoses were unknown. Now that the first generation of CCHD children has survived into adulthood, there is a gray area between cure and death. Kaitlin will conduct ethnographic interviews with CCHD adults who have undergone major cardiac hospitalizations, procedures, and/or surgeries within the past year, along with adult congenital heart disease medical specialists. Using disability studies and medical anthropology lenses, Kaitlin’s research will explore what being “fixed” actually means for adults with CCHD and the implications of life with a prognosis unknown.