Research: Management of Congenital Diaphragmatic Hernia (CDH) care: Addressing what matters to patients and their families?

Darlene Silverman July 17, 2025

Semin Fetal Neonatal Med

. 2025 Jul 1:101651.

doi: 10.1016/j.siny.2025.101651. Online ahead of print. https://pubmed.ncbi.nlm.nih.gov/40619309/

Management of Congenital Diaphragmatic Hernia (CDH) care: Addressing what matters to patients and their families?

K Saint Denny¹, J Lawer², S Mur³, T M Prentice⁴

Affiliations Expand

PMID: 40619309
DOI: 10.1016/j.siny.2025.101651

Free article

Abstract

Despite advances in care, Congenital Diaphragmatic Hernia remains a complex and challenging condition to manage and is often associated with long term morbidity. Families are required to navigate considerable uncertainty, challenges in prognostication and communication, and must adapt to an evolving clinical trajectory. This review addresses considerations and practical tips for healthcare professionals to improve the family and patient experience from diagnosis to adult care, from the perspective of clinicians and CDH families. This paper emphasizes the importance of including those with lived experience with CDH in defining topics of priority in research and in clinical and support interventions.

Keywords: Congenital diaphragmatic hernia; Development. parental perspectives; Follow-up; Neonates.

About The Author

Darlene Silverman

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Founded in 1995 as CHERUBS, CDH Research International is a global non-profit working to help over 7000 patient families in 80 countries by raising awareness and supporting Congenital Diaphragmatic Hernia Research.

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