Parents-reported nutrition and feeding difficulties in infants with congenital diaphragmatic hernia after hospital discharge

Purpose - Congenital diaphragmatic hernia (CDH) affects 1 in 3000-5000 newborns. In survivors, long-term complications include gastroesophageal reflux (GER), feeding difficulties, and failure to thrive. Data from the parents' perspective remain scarce. This study aims to report the prevalence a...

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Main Authors: Leyens, Judith (Author) , Bo, Bartolomeo (Author) , Heydweiller, Andreas (Author) , Schaible, Thomas (Author) , Boettcher, Michael (Author) , Schroeder, Lukas (Author) , Müller, Andreas (Author) , Kipfmüller, Florian (Author)
Format: Article (Journal)
Language:English
Published: 14 July 2024
In: Early human development
Year: 2024, Volume: 195, Pages: 1-8
ISSN:1872-6232
DOI:10.1016/j.earlhumdev.2024.106074
Online Access:Verlag, kostenfrei, Volltext: https://doi.org/10.1016/j.earlhumdev.2024.106074
Verlag, kostenfrei, Volltext: https://www.sciencedirect.com/science/article/pii/S0378378224001439
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Author Notes:Judith Leyens, Bartolomeo Bo, Andreas Heydweiller, Thomas Schaible, Michael Boettcher, Lukas Schroeder, Andreas Mueller, Florian Kipfmueller

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520 |a Purpose - Congenital diaphragmatic hernia (CDH) affects 1 in 3000-5000 newborns. In survivors, long-term complications include gastroesophageal reflux (GER), feeding difficulties, and failure to thrive. Data from the parents' perspective remain scarce. This study aims to report the prevalence and impact of feeding difficulties on CDH families after discharge. - Methods - National web-based survey amongst families with CDH infants in 2021. - Results - Caregivers of 112 CDH survivors participated. The baseline characteristics were representative with 54 % male, 83 % left-sided CDH, prenatal diagnosis in 83 %, and 34 % requiring extracorporeal membrane oxygenation. Most infants (81 %) were discharged within three months, with 62 % feeding by mouth, and 30 % requiring a feeding tube. Persisting feeding difficulties were experienced by 73 %, GER being the most common (66 %), followed by insufficient weight gain (64 %). After discharge, 41 % received medical support for failure to thrive. The primary-care pediatrician was consulted most frequently for information (61 %) and treatment of feeding difficulties (74 %). Therapeutic success was reported in 64 %. A cessation of symptoms was achieved in 89 % within three years. - Conclusion - The majority of CDH infants had persistent feeding difficulties. This survey highlights the impact surrounding feeding problems on CDH families. Further studies and support systems are needed to raise the quality of life in CDH infants and their families. 
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