Children with single ventricle heart defects undergo a series of two or three operations during the first three years of life. These operations, known as staged surgical palliation, result in a reconstructed circulation called the Fontan circulation.
Despite dramatic improvements in survival and outcomes, children with single ventricle heart defects remain at higher risk for complications including poor growth, neurodevelopmental delays, hospital readmissions and shortened lifespans.
The period between the newborn operation (Norwood, hybrid or shunt) and second stage operation (Hemi-Fontan or bidirectional Glenn) is known as the interstage period. The interstage period is an especially vulnerable time for single ventricle babies and requires specialized care and monitoring.
About the MUSC Children's Health Interstage Monitoring Program
The mission of the interstage monitoring program is to prevent life-threatening events and improve growth between the newborn and second stage operations in babies with single ventricle heart defects. Babies are followed from the time of hospital discharge after the newborn operation until they undergo the second stage operation. The core Interstage monitoring team is comprised of a cardiologist, a nurse practitioner and a dietitian.
Services We Offer
- Continuum of care from the inpatient to outpatient environment.
- Ongoing and comprehensive education from a nurse practitioner who also serves as a care coordinator for single ventricle patients.
- Written education resources including an individualized patient care binder.
- Home monitoring with an infant scale and pulse oximeter.
- Weekly phone communication with the interstage monitoring program nurse practitioner and dietitian.
- Weekly care conferences between the interstage monitoring program cardiologist, nurse practitioner and dietitian.
- Weekly communication between the primary cardiologist, interstage monitoring program cardiologist, and cardiothoracic surgeon.
- Coordination of care and services including follow-up feeding evaluations, hearing evaluations, cardiac catheterizations and other subspecialty appointments.
- Follow-up evaluation in the MUSC Children’s Cardiac Neurodevelopmental Clinic.
The MUSC Children's Health Interstage Monitoring Program participates in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a multicenter project dedicated to improving the survival and quality of life of infants with single ventricle heart defects.