Funding outcome

Children born with complex heart defects who have only one pumping chamber, instead of the normal two pumping chambers undergo multiple open-heart surgeries early in life. These include the Fontan operation, typically done between 2 and 4 years of age. Due to advances in medical and surgical care, the number of these children who have survived into adolescence and beyond has grown rapidly in recent decades. However, children who have had Fontan surgery face a long list of potential health problems as they get older, including sleep-related breathing problems. There is very little data about how many children after Fontan surgery have a sleep problem. However, one report suggests it may be as high as 57%. Unfortunately, sleep-related breathing problems in children after Fontan surgery will negatively affect the circulation and heart function. Therefore, we need a better understanding of how to recognize and treat sleep disorders in these children. The goals of the study are: 1) to determine how many children after Fontan surgery have sleep-related breathing problems, 2) to describe what factors are associated with sleep problems among these children, and 3) to determine how to best identify children with a sleeping disorder. For example, are parent or child-reported sleep questionnaires sufficiently accurate to identify which children have a sleep disorder? Or are overnight sleep studies in hospital need to make the diagnosis? The results of this study will be shared in easy-to-read plain language summaries for patients and families affected by these heart defects, and with patient organizations. Study findings will be presented at conferences and published in the medical literature. Results of this study will allow doctors to accurately diagnose and treat sleep-related breathing problems before they affect the heart and circulation.