HOME SURVEILLANCE

HOME SURVEILLANCE AND FEEDING STRATEGIES IN INFANTS WITH COMPLEX SINGLE VENTRICLE

Infants born with hypoplastic left heart syndrome and other forms of complex single ventricle have significant growth failure and are at risk for other significant problems after their initial surgery, the Norwood operation.

At one institution when families participated in a home surveillance program, involving parental monitoring of weight and oxygen saturation following discharge, daily home surveillance was shown to facilitate identification of babies at risk for problems between the first and second surgery.

As part of the home surveillance program, families are discharged with digital infant scales (Baby Checker Scale) and pulse oximeters. Parents are asked to record a daily weight and oxygen saturation in a log. In addition, parents record information regarding volume and frequency of feedings taken during each 24 hr period and complete a parental uncertainty questionnaire before discharge, and at 4 weeks and 12 weeks after discharge.

Parents are instructed to seek medical advice if the oxygen saturation is too low or if there is weight loss of 1 ounce or failure to gain weight during a 3-day period. One aim of our study is to compare feeding strategies in infants following the Stage I Norwood operation and the relationship to weight gain outcomes at Stage II surgery at 4-6 months of age.

A second aim is to determine whether the home surveillance program will reduce interstage infant mortality, improve weight gain, and/or affect parental perception of uncertainty and stress following hospital discharge. We hope the results of this program will not only be helpful for the babies and families involved, but also provide us with information to optimize outcomes for all babies born with complex heart problems following the Norwood operation.