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Thickened feeds for infants with critical CHD: a survey of current practices

Published online by Cambridge University Press:  13 March 2025

Courtney E. Jones Open the ORCID record for Courtney E. Jones [Opens in a new window] ,
Hema Desai Open the ORCID record for Hema Desai [Opens in a new window] ,
Susan Willette ,
Karli A. Negrin ,
Kristi Glotzbach  and
Samantha C. Butler Open the ORCID record for Samantha C. Butler [Opens in a new window]
Courtney E. Jones*
Affiliation:
Department of Acute Care Therapy Services, Primary Children’s Hospital, Salt Lake City, UT, USA
Hema Desai
Affiliation:
Department of Rehabilitation Services, Children’s Hospital of Orange County, Orange, CA, USA
Susan Willette
Affiliation:
Department of Speech-Language Pathology, Ann & Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Karli A. Negrin
Affiliation:
Department of Therapy and Rehabilitative Services, Nemours Children’s Hospital, Wilmington, DE, USA
Kristi Glotzbach
Affiliation:
Department of Pediatrics, University of Utah, Primary Children’s Hospital, Salt Lake City, UT, USA
Samantha C. Butler
Affiliation:
Department of Psychiatry and Behavioral Sciences, Boston Children’s Hospital, Boston, MA, USA Department of Psychiatry, Harvard Medical School, Boston, MA, USA
*
Corresponding author: Courtney E. Jones; Email: [email protected]
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Abstract

Introduction:

Dysphagia is common in infants born with critical CHD. Thickened liquids are often used to treat dysphagia, but associated risks limit widespread use among feeding specialists. This survey aims to assess dysphagia treatment patterns and thickened liquid use across paediatric cardiac surgical centres.

Methods:

A 24-question, cross-sectional survey. Convenience and snowball sampling methods were used to engage 52 paediatric cardiac surgical centres affiliated with the Cardiac Newborn Neuroprotective Network. Descriptive statistics were used to analyse and compare responses.

Results:

Twenty-six individual respondents represented 21 unique paediatric cardiac surgical centres. Most responses were from experienced, speech–language pathologists (78%) at medium size centres (88%). Ninety-three percent of responding centres used thickened liquids to treat dysphagia and 81% only after formal instrumental assessment of swallowing. Thickened oral feeding was used for single-ventricle patients by 85% versus 69% for two-ventricle patients. Barriers to recommending thickened oral feedings included the cost of thickening agents, parental non-adherence, and gastrointestinal concerns.

Conclusions:

This is the first survey to report multi-institutional dysphagia treatment practice variation at United States congenital cardiac surgical centres. Thickened oral feedings are frequently used across centres in high-risk critical CHD patients but treatment benefit remains unclear. This survey highlights a broad scientific community poised to direct dysphagia research in critical CHD to address practice variation, short- and long-term impact of thickened oral feeding on feeding outcomes, and barriers to use and access of thickening agents.

Keywords

Thickened Liquidsdysphagiaoral feedingCHDfeeding difficultiesdevelopmental delays
Type
Original Article
Information
Cardiology in the Young , First View , pp. 1 - 6
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Copyright
© The Author(s), 2025. Published by Cambridge University Press

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