Management of Hypoplastic Left Heart Syndrome in Low-Resource Settings and the Ethics of Decision-Making
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Date
2023
Journal Title
Journal ISSN
Volume Title
Publisher
World Journal for Pediatric and Congenital Heart Surgery
Abstract
Hypoplastic left heart syndrome (HLHS) is possibly the most challenging congenital heart defect to confront in any setting.
The highly specialized infrastructure and resources needed to treat HLHS is not available in many low-resource settings.
However, low-resource settings must not be assumed to be synonymous with low- and middle-income countries as national
income is not necessarily indicative of a country’s prioritization of healthcare resources. Besides, a low-resource setting may
be institution-specific as well as country-specific. We have stratified institutional capabilities for addressing the requirements
of treatment for HLHS into five levels based on the capacity for diagnosis, intervention, and post-discharge monitoring.
Depending on institutional capabilities, children born with HLHS in low-resource settings experience a spectrum of outcomes
ranging from death without diagnosis to the hybrid or Norwood stage 1 palliation. The decision-making is ethically challenging
when resources are scarce and economic efficiency must be considered in the context of distributive justice. Even in settings
that would be classified as resource-rich where survival after surgery and quality of life afterward keep improving, not every parent would choose surgical intervention for their hypothetical child with HLHS.
Description
Research Article
Keywords
congenital heart disease, hypoplastic left heart syndrome, Norwood procedure