Oral Feeding Infants with Complex Congenital Heart Disease and Trisomy 21 Pre- and Post-Surgical Intervention: A Comparative Case Study
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Date
2024-05
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The Ohio State University
Abstract
Purpose and Background/ Significance: Infants with complex congenital heart disease (CCHD) and infants with Down Syndrome (DS) each have unique and complex feeding difficulties. Little research exists about feeding infants with both conditions. The purpose of this study was to examine oral feeding dynamics during hospitalization of infants with DS needing surgical intervention for CCHD in the first 6 months of life.
Framework: A dynamic systems framework was utilized to assess factors that may influence an infant’s ability to feed including feeding constraints (task, external, internal), behavioral responses, and feeding related outcomes.
Methods: We used a multiple case study, descriptive design. Infants unable to achieve a nutritive suck were excluded. Feedings were observed pre and post operatively. The unit of analysis was individual feedings, which were assessed per feeding, not per infant. For this study, infant engagement and fluid management were measured with the Dynamic-Early Feeding Skills assessment and coded using the Noldus Observer XT system. Descriptive analysis included percentages of feeding skills exhibited and numbers of discrete events occurring across feedings. Lag sequential analysis (LSA) was calculated to describe probability of relationships between skills.
Results: Data from 6 feedings observed in 5 infants were included, 3 pre-op and 3 post-op. In 2 of 3 pre-operative feeds, infants were fully engaged in less than 8% of the feeding, and in 2 of 3 the feeds, infants exhibited no difficulty with fluid management for 93% of the feeding. However, in one feed the infant experienced 11 episodes of loss of milk from nose or mouth. In all three post-operative, feeds, infants demonstrated low engagement (12-75% of feeding) or disengagement (7-88% of feeding). Infants had difficulty managing fluid for less than 14% of the feeding. Brief distress events occurred 1-14 times pre-op and 7-12 times post-op. Pre- and post-operative LSA suggested temporal associations between low engagement and difficulty with fluid management.
Conclusion: Engagement and fluid management may be issues for infants with DS and CCHD during pre- and post-operative feedings. More research is needed in larger samples to identify areas for intervention to improve feeding in these high-risk infants.
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Keywords
Congenital Heart Disease, Cardiac, Feeding, Pediatric, Down syndrome