About the Single Ventricle Program at Arkansas Children’s Heart Institute
The Single Ventricle program at Arkansas Children’s Heart Institute aims to improve the quality of life and provide continuity of care from fetal life to adulthood for all patients with single ventricle heart disease in Arkansas. Our multidisciplinary team provides comprehensive care based on research and innovation. Our program is part of the National Pediatric Cardiology Quality Improvement Collaborative, whose mission is to improve the care and outcomes of infants with hypoplastic left heart syndrome from prenatal diagnosis through one year of age. We are also part of The Fontan Outcomes Network (FON), which is a new lifespan learning network made up of a community of patients, families, clinicians, and researchers who together seek to transform outcomes for all people affected by single ventricle heart disease by leveraging data to facilitate research, drive improvement, and spark innovation.
How Do We Treat Single Ventricle Heart Anomalies
A series of three heart surgeries over the first few years of life are necessary to re-route the blood flow and provide the best possible blood flow for a baby’s body. The first surgery is needed in the newborn period and is performed by our experienced cardiothoracic surgeons. Our team of skilled intensive care physicians and nurses provides care after surgery. After discharge from ACH, the child will be monitored closely in the interstage program till the second surgery (Glenn operation) around 4-6 months. The third operation is the Fontan operation around 3-4 years of age. After Fontan, the child will be followed in the Fontan multidisciplinary program throughout adulthood.
About the Heart Institute Interstage Program
Our multidisciplinary team, established in 2013, is experienced in all aspects of single ventricle care with a focus on the challenges of growth and development. This includes a comprehensive approach to feeding difficulties by speech-language pathologists and registered dietitians. Additional rehabilitative needs are addressed with occupational therapy and through our cardiac neurodevelopmental program (link to the CNP info).
Our program places a particular focus on the interstage period, a high-risk period of time between a baby’s first and second heart surgeries. Our team works closely with patient families to set up a home monitoring plan that helps to track the baby’s weight, oxygen levels, heart rate, and even a video of the baby while at home. This allows the single ventricle team to remotely assess the baby and detect any problems early. Families enter data daily using a free app on their phones, and the single ventricle team reviews the home data. Frequent outpatient clinic visits (at least every two weeks) and routine testing allows early detection of any problems that may occur.
Extensive education and home monitoring help parents and caregivers actively participate in the care of their babies outside of the hospital and ease their transition to the second surgery.