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Organization of care of infants with congenital diaphragmatic hernia-Building a high-functioning CDH program
Caraciolo J Fernandes1, Kanekal S Gautham2
1Department of Pediatrics, Division of Neonatology, Baylor College of Medicine/Texas Children's Hospital, Houston, TX, USA. fernande@bcm.edu.
Insights
Infants with congenital diaphragmatic hernia (CDH) need organized, multidisciplinary programs for optimal care. This article outlines the essential components for establishing an ideal CDH program from prenatal diagnosis to long-term follow-up.
Area of Science:
- Pediatric Surgery
- Neonatal Care
- Healthcare Management
Background:
- Congenital diaphragmatic hernia (CDH) is associated with high mortality and morbidity.
- Existing literature focuses on technical aspects of CDH care, highlighting variations in management.
- There is a lack of comprehensive guidelines on organizing care for CDH patients.
Purpose of the Study:
- To describe the essential elements of an ideal congenital diaphragmatic hernia (CDH) program.
- To provide a framework for systematic and purposeful healthcare delivery for infants with CDH.
- To address the need for standardized, coordinated care from prenatal diagnosis through long-term postnatal management.
Main Methods:
- Review of existing literature on congenital diaphragmatic hernia (CDH) management.
- Drawing on general principles of clinical program development.
- Experience-based insights into the organization of CDH care.
Main Results:
- Identification of key components for an ideal CDH program.
- Emphasis on the necessity of a structured program beyond technical expertise.
- Highlighting the importance of coordinated, multidisciplinary care delivery.
Conclusions:
- Optimal outcomes for infants with congenital diaphragmatic hernia (CDH) require a well-organized, systematic healthcare program.
- Such programs should integrate prenatal diagnosis, surgical and medical care, and long-term follow-up.
- Establishing an ideal CDH program is crucial for improving patient survival and quality of life.
Abstract:
Infants born with congenital diaphragmatic hernia have high mortality and morbidity and require coordinated multidisciplinary care for optimal outcomes. Over the past several decades numerous articles have been published on the technical aspects of the care of these patients demonstrating both the variation in management across institutions as well as the desirability and need for standardization of care. Unfortunately, none have focused on the organization of care for CDH patients encompassing the range from early prenatal diagnosis to long-term postnatal care. However, to achieve optimal care and optimal outcomes, it is important to not only have excellent technical surgical and medical care but also to have an organized, systematic, and purposefully designed program for the delivery of healthcare to infants with this condition. In this article, based on our experience and drawing on general principles of building clinical programs, we describe the important elements of an ideal CDH program.
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