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Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, “Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease,” includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.
To determine clinical consensus and non-consensus in regard to evidence-based statements about feeding infants with complex CHD, with a focus on human milk. Areas of non-consensus may indicate discrepancies between research findings and practice, with consequent variation in feeding management.
Materials and Methods:
A modified Delphi survey validated key feeding topics (round 1), and determined consensus on evidence-based statements (rounds 2 and 3). Patients (n=25) were an interdisciplinary group of clinical experts from across the United States of America. Descriptive analysis used SPSS Statistics (Version 26.0). Thematic analysis of qualitative data provided context for quantitative data.
Round 1 generated 5 key topics (human milk, developing oral feeding skills, clinical feeding practice, growth failure, and parental concern about feeding) and 206 evidence-based statements. The final results included 110 (53.4%) statements of consensus and 96 (46.6%) statements of non-consensus. The 10 statements of greatest consensus strongly supported human milk as the preferred nutrition for infants with complex CHD. Areas of non-consensus included the adequacy of human milk to support growth, need for fortification, safety, and feasibility of direct breastfeeding, issues related to tube feeding, and prevention and treatment of growth failure.
The results demonstrate clinical consensus about the importance of human milk, but reveal a need for best practices in managing a human milk diet for infants with complex CHD. Areas of non-consensus may lead to clinical practice variation. A sensitive approach to these topics is needed to support family caregivers in navigating feeding concerns.
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