Single Ventricle Journey: Children & Young Adults

In the Single Ventricle Center of Excellence, we follow patients at all points along their Roadmap with single ventricle physiology. After a child has their third palliative surgery (The Fontan Operation), our team of dedicated providers follows them in the Single Ventricle Follow-Up Clinic at the main hospital. Our team provides a flexible service model ranging along a spectrum from primary cardiology follow-up visits through “as needed” consultative services. Frequency of follow-up with our team is based on a collaborative discussion with the family and the referring cardiologist. Every patient will have their care managed by our nurse coordinator, an advanced practice provider, and a dedicated cardiologist.

Beyond specialized cardiac care, our team also works with other experts to monitor the other vital organs – for example routine liver evaluations, nutrition counseling, exercise & fitness testing, and neurodevelopmental and school support. In addition to watching for other organ issues, we know that the Fontan operation is often not the final intervention for these children. Many of them will require additional operations or catheter-based procedures in late childhood or young adulthood. They are also at risk for heart rhythm problems and progressive cardiac dysfunction. In some children and young adults, this may require heart transplantation. Children with single ventricle physiology are also at increased risk for a broad spectrum of neurodevelopmental and psychosocial issues that require careful surveillance throughout childhood in order to maximize their functional health outcomes and quality of life. Proper monitoring for these potential issues requires a dedicated team with specific expertise in Single Ventricle care. In order to best take advantage of the talents of our entire multidisciplinary team, all patients are collaboratively reviewed prior to their next clinic visit and/or with any major medical decisions to ensure that each patient’s short and long-term medical plan is optimized.