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Disruptions in the development of feeding for infants with congenital heart disease

Published online by Cambridge University Press:  11 December 2020

Courtney E. Jones*
Acute Care Therapy Services, Primary Children’s Hospital, Salt Lake City, UT, United States
Hema Desai
Department of Rehabilitation Services, Children’s Hospital of Orange County, Orange, CA, United States
Jennifer L. Fogel
Department of Pediatric Rehabilitation, Advocate Children’s Hospital, Oak Lawn, IL, United States
Karli A. Negrin
Department of Therapy and Rehabilitative Services, Nemours Alfred I DuPont Hospital for Children, Wilmington, DE, United States
Andrea Torzone
Heart Center, Cardiac Intensive Care Unit Children’s Health, Children’s Medical Center Dallas, Dallas, TX, United States
Susan Willette
Department of Speech-Language Pathology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, United States
Jenn L. Fridgen
Department of Physical Therapy, Seattle Children’s Hospital, Seattle, WA, United States
Lisa R. Doody
Pediatric Rehabilitation and Development, Advocate Children’s Hospital, Oak Lawn, IL, United States
Kimberly Morris
Department of Speech-Language Pathology, Rady Children’s Hospital San Diego, San Diego, CA, United States
Katherine Engstler
Department of Otolaryngology and Communication Enhancement, Boston Children’s Hospital, Boston, MA, United States
Nancy L. Slater
Physical Medicine and Rehabilitation Services, Children’s Minnesota, Minneapolis, MN, United States
Barbara Medoff-Cooper
The Children’s Hospital of Philadelphia, University of Pennsylvania, School of Nursing, Philadelphia, PA, United States
Jodi Smith
Program Director, Mended Hearts & Mended Little Hearts, Albany, GA, United States
Brittney D. Harris
Children’s Health Rehabilitation and Therapy Services, Children’s Health Medical Center, Dallas, TX, United States
Samantha C. Butler
Harvard Medical School, Boston Children’s Hospital, Boston, MA, United States
Author for correspondence: C. E. Jones, MS CCC-SLP 81N Mario Capecchi Dr., Primary Children’s Hospital, Salt Lake City, UT84112, United States. Tel: 801-662-4959. E-mail:


Congenital heart disease (CHD) is the most common birth defect for infants born in the United States, with approximately 36,000 affected infants born annually. While mortality rates for children with CHD have significantly declined, there is a growing population of individuals with CHD living into adulthood prompting the need to optimise long-term development and quality of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental challenges and feeding difficulties. Feeding challenges carry profound implications for the quality of life for individuals with CHD and their families as they impact short- and long-term neurodevelopment related to growth and nutrition, sensory regulation, and social-emotional bonding with parents and other caregivers. Oral feeding challenges in children with CHD are often the result of medical complications, delayed transition to oral feeding, reduced stamina, oral feeding refusal, developmental delay, and consequences of the overwhelming intensive care unit (ICU) environment. This article aims to characterise the disruptions in feeding development for infants with CHD and describe neurodevelopmental factors that may contribute to short- and long-term oral feeding difficulties.

Original Article
© The Author(s), 2020. Published by Cambridge University Press

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