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Articles

Vol. 12 No. 2: April Issue

Mending Little Hearts ‘For Life’? Promises of a Cure and Experiences of Chronicity in a Context of Unequal Access to Paediatric Heart Surgery

Submitted
July 7, 2023
Published
03-Jun-2025

Abstract

Congenital heart defects (CHDs) are the most common type of major birth defects worldwide. Yet globally, access to high quality treatment is very limited and uneven with most patients living in places without adequate diagnostic or treatment. Based on ethnographic engagement with Beninese and Togolese children undergoing surgical treatment in Switzerland through a humanitarian medicine programme, this paper explores the multiple temporalities and experiences of chronicity at play in the lived experiences of families with children with CHDs in a context of profound health inequalities. These temporal experiences encompass the various promises of a cure made to them, ensuring continued investment in their child’s health, experiencing a sense of rebirth, and navigating the potential risks of future complications. The article highlights how families facing CHDs in underserved regions encounter distinct forms of chronicity compared to those in more privileged areas. It identifies four kinds of chronicity in the families’ lived experiences: symptom-related, procedural, follow-up, and emotions-related.

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