Case Report: Holistic approach to management of an infant with severe osteogenesis imperfecta in the neonatal intensive care unit

This case helps expand the scope of what is possible for families facing life-limiting diagnosis. It informs best practices for navigating prognostic uncertainty, guiding ethical decision-making, and promoting holistic support beyond survival metrics. Cases like this advocate for a shift in focus from solely survival to quality of life and help establish thoughtful standards for managing severe skeletal dysplasias within perinatal and neonatal care frameworks.

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Publication Details

Journal
Frontiers in Pediatrics
Published
2025-06-11
DOI
https://doi.org/10.3389/fped.2025.1475545
Primary Topic
Connective tissue disorders research
Type
article
Field-Weighted Citation Impact
0.00
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article

Case Report: Holistic approach to management of an infant with severe osteogenesis imperfecta in the neonatal intensive care unit

Ahella Ismail A. Mousa, Dipsal Timila, Lalitha Gundamraj
Frontiers in Pediatrics
Connective tissue disorders research
article

Case Report: Holistic approach to management of an infant with severe osteogenesis imperfecta in the neonatal intensive care unit

Ahella Ismail A. Mousa, Dipsal Timila, Lalitha Gundamraj
article en

Abstract

This case helps expand the scope of what is possible for families facing life-limiting diagnosis. It informs best practices for navigating prognostic uncertainty, guiding ethical decision-making, and promoting holistic support beyond survival metrics. Cases like this advocate for a shift in focus from solely survival to quality of life and help establish thoughtful standards for managing severe skeletal dysplasias within perinatal and neonatal care frameworks.

Frontiers in PediatricsVol. 13
Sparrow Hospital (US), Michigan State University (US)
Openalex Percentile: Top 85%
Connective tissue disorders research
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