A new hope
Prior to 1980, a single ventricle heart defect diagnosis (only one pumping chamber in the heart instead of two) was fatal. Today, thanks to surgical innovation through research, survival rates for children with this condition at the Stollery Children’s Hospital have grown to greater than 80 percent.
Pediatric cardiologist Andrew Mackie and his team are contributing to this growing survival rate. Supported by the WCHRI Research Capacity Building Program, the Stollery Single Ventricle Outcomes team is focused on developing an understanding of blood vessel function and improving exercise capacity, as well as quality of life for children and families who live with the condition.
One of their studies is examining the impact of a home-based exercise program, where children with a single ventricle defect can take control of their heart health at home and boost confidence in their abilities. “We want to improve perceptions of these children with a single ventricle form of congenital heart disease, and their parents’ perceptions of their ability to safely participate in exercise,” Mackie said.
Another study looks at the elements of a successful transition from pediatric to adult care. As children with a congenital heart condition move into an adult care setting, they must have appropriate knowledge about their condition and feel empowered to manage their own health. If they don’t, undetected complications in adulthood could have dire consequences: “The individual may not be aware that they are developing a new complication. Not detecting that complication until they start having symptoms can often mean that it’s too late,” noted Mackie.
The Stollery Single Ventricle Outcomes team continues to assess a variety of other ways to improve the lives of children with a single ventricle. As new methods are evaluated, evidence-based treatment for these heart defects are advanced in a major way—caring for children who had no hope of survival only thirty years ago.
The research of the Stollery Single Ventricle Outcomes team has been funded by the generous support of the Stollery Children’s Hospital Foundation through WCHRI.