Abstract
Although many suffering from congenital heart defects (CHDs) have seen their conditions become chronic in Denmark today, the risk of complications, deteriorations, and further surgical interventions often lurk in the future. Building on fieldwork in outpatient clinics in Denmark and the homes of families living with CHDs, I explore the role outpatient encounters play in families’ efforts to understand and navigate the prognoses of CHDs by examining how they become routine punctuations and images of uncertainty, and how they play into families’ efforts to prepare for futures where CHDs might develop negatively while also trying to keep such scenarios at bay. I argue that these encounters exemplify, generate, and tentatively curb the particular uncertainties of living with CHDs. Hence, I suggest that they can be thought of as prognostic calibrations—a conceptual oxymoron that encapsulates the anxiety and uncertainty that I show persist around CHD prognoses despite many efforts by families and healthcare staff to establish routine, a sense of security, and certainty.
Highlights
Four-year-old Martin has come into the outpatient clinic for his yearly checkup with his parents, Louise and Allan.1 Martin is not currently affected by his moderate congenital heart defects (CHDs), the surgery he underwent at the age of one might not last forever—a leaky valve could at some point create problems
In the wake of decades of impressive advances in the field of CHD diagnostics and treatment, I have focused on how families together with healthcare staff relate to the promising yet still uncertain futures of life with CHD(s) in outpatient encounters
When Louise and Allan try to figure out whether Dr Madsen’s use of the phrase ‘heart disease’ means their son’s CHD has deteriorated, and when Fanny counts scanning images and, like her parents, struggles to figure out if and when a new surgery might be necessary, they are engaging in prognostic calibrations
Summary
Four-year-old Martin has come into the outpatient clinic for his yearly checkup with his parents, Louise and Allan.1 Martin is not currently affected by his moderate CHD, the surgery he underwent at the age of one might not last forever—a leaky valve could at some point create problems. Hospitalisation and heart surgeries are crucial, dramatic, and often traumatic moments, check-ups are the most recurrent clinical intervention and reminder of CHDs that shape life for families in important ways in the many months and years that follow surgery.
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