SPECIAL SESSION: Hearts Too Small to Fail: The Journey of Infants With CHD and Their Families

Description/Overview: Congenital heart disease (CHD) is the most common congenital defect in neonates, affecting some 40,000 births each year. Advances in surgical, medical and nursing care for infants with complex CHD have resulted in an increase in survival and a growing population of infants with morbidities related to their underlying defect, surgical intervention and/or residual anatomic or hemodynamic abnormalities. Current literature suggests infants with complex CHD are at increased risk for worse neurodevelopmental outcomes in both cognitive and motor domains in late infancy and early childhood. Various factors influencing neurodevelopmental outcomes in infants with complex CHD have been identified; these include genetic abnormalities and syndromes, prematurity, post-surgical physiology, length of hospital stay (LOS), history of cardiac arrest, utilization of extracorporeal membrane oxygenation or ventricular assist device, post-operative stroke, seizures or abnormalities on neuroimaging. The etiology of abnormal cognitive and motor neurodevelopment in these infants appears to be multifactorial and is not well understood. Over the past 10 years my study team has been in search of the factors associated with infant outcomes. We have examined feeding behaviors, energy expenditure, parental stress and methods to support families to improve both infant stability and family functioning. We have used both a longitudinal design to follow infant development from birth to discharge as well as a RCT to provide transitional care for families with infants who have undergone neonatal cardiac surgery from hospital to home. The current RCT called REACH uses daily parent-APN communication and a clinical information system that harnesses the power of speech and video technology to create a virtual home monitoring system using any telephone in combination with videoconferencing and a web-based educational system. This model gives families the opportunity for visual and audio contact with subspecialists and will provide a means of home-based clinical follow-up of the high-risk infant during the critical early weeks after surgery Results of this ten year effort will be discussed.