Society for Medical Anthropology
Volunteered - Oral Presentation Session
Fifty years ago, most children with congenital heart defects (CHDs) died early in childhood. Today biomedical advancements in Denmark, as in other developed countries, have transformed many CHDs into chronic conditions. However, risks of complications, deteriorations, and more surgical interventions lurk in the future. Based on fieldwork spanning two years with Danish children and youth with CHDs and their families, this paper examines check-ups in outpatient clinics as sites exemplifying the challenges and complexities of navigating and negotiating futures with CHDs.
As there is much prognostic uncertainty, and doctors, nurses, and parents are hopeful of biomedical advances and want to shield the children and youth from worry, fears about prognoses and ultimately death are very limited and cautiously discussed. However, such fears still permeate the families, and as deteriorations are not always readily visible on the body, and check-ups punctuate the much-desired normality, they become tense and highly ritualized encounters. Families create routines to lessen anxiety and uncertainty, but every word, gesture, silence, or change in procedure by medical professionals is still scrutinized for information, as the medical imagery produced is blurry, like the futures, in the eyes of the families. In the midst of this are the children and youth with CHDs, who only know and remember fragments of their illness story. I argue that doctors, nurses, and families struggle to navigate and negotiate images of a future with CHDs that is both realistic and hopeful and informative yet protective for all members of the family.