Interstage mortality among infants with hypoplastic left heart syndrome: Outcomes of a multicenter home monitoring program

Abstract

BackgroundInterstage mortality remains a risk for children with hypoplastic left heart syndrome (HLHS). Decreased mortality has resulted from interstage home monitoring (IHM) programs. The Stollery Children's Hospital has had an IHM program in place since 2003 in collaboration with multiple regional non-surgical pediatric cardiology programs located across Western Canada. ObjectivesWe sought to determine the incidence of interstage mortality and risk factors for interstage death across this large geographic region. MethodsRetrospective cohort study including all infants with HLHS who underwent Norwood-Sano surgery between January 2006 and June 2019. Home monitoring consisted of an infant weight scale and pulse oximetry with parental education prior to discharge post Norwood-Sano. Parents were advised to weigh their infant and check oxygen saturation every day and contact their cardiology team if there were desaturations, weight loss, poor feeding, fever or other concerns. Outpatient assessment was planned biweekly. ResultsThere were one hundred and sixty-five infants who met eligibility criteria. Twenty-three infants (14 %) died prior to Glenn; of these, 18 (11 %) had in-hospital death, and 5 (3.5 %) of 142 discharged patients had an out-of-hospital (interstage) death. Three infants (2 %) underwent heart transplantation prior to Glenn, and 137 (83 %) survived to Glenn. Risk factors for interstage death could not be determined due to the rarity of this outcome. ConclusionThe out-of-hospital interstage mortality that we observed was lower than many previous reports, suggesting that implementation of this IHM program across a large geographic area, including multiple non-surgical sites, was successful. Additional investigations regarding the potential impact of designated care teams and virtual interstage care delivery are warranted in this vulnerable population.