Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative.

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.

Assessment and management of feeding difficulties for infants with complex CHD.

Early surgical intervention in infants with complex CHD results in significant disruptions to their respiratory, gastrointestinal, and nervous systems, which are all instrumental to the development of safe and efficient oral feeding skills. Standardised assessments or treatment protocols are not currently available for this unique population, requiring the clinician to rely on knowledge based on neonatal literature. Clinicians need to be skilled at evaluating and analysing these systems to develop an appropriate treatment plan to improve oral feeding skill and safety, while considering post-operative recovery in the infant with complex CHD. Supporting the family to re-establish their parental role during the hospitalisation and upon discharge is critical to reducing parental stress and oral feeding success.

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

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.

Promoting Parent Partnership in Developmentally Supportive Care for Infants in the Pediatric Cardiac Intensive Care Unit.

BACKGROUND: Limited opportunities for parents to care for their critically ill infant after cardiac surgery can lead to parental unpreparedness and distress. PURPOSE: This project aimed to create and test a bedside visual tool to increase parent partnership in developmentally supportive infant care after cardiac surgery. METHODS: The Care Partnership Pyramid was created by a multidisciplinary team and incorporated feedback from nurses and parents. Three Plan-Do-Study-Act (PDSA) cycles tested its impact on parent partnership in care. Information about developmentally supportive care provided by parents during each 12-hour shift was extracted from nursing documentation. A staff survey evaluated perceptions of the tool and informed modifications. RESULTS: Changes in parent partnership during PDSA 1 did not reach statistical significance. Staff perceived that the tool was generally useful for the patient/family but was sometimes overlooked, prompting its inclusion in the daily goals checklist. For PDSA 2 and 3, parents were more often observed participating in rounds, asking appropriate questions, providing environmental comfort, assisting with the daily care routine, and changing diapers. IMPLICATIONS FOR PRACTICE: Use of a bedside visual tool may lead to increased parent partnership in care for infants after cardiac surgery. IMPLICATIONS FOR RESEARCH: Future projects are needed to examine the impact of bedside care partnership interventions on parent preparedness, family well-being, and infant outcomes.