Stollery joins global network for research on heart defects

Young heart patients at the Stollery Children’s Hospital now have a global network of clinical researchers behind them, helping to improve outcomes and quality of life after surgery.

The facility is the first hospital in Canada to join the Fontan Outcomes Network (FON), an international learning health community created by and for patients, families, clinicians and researchers. 

The network’s data enables treatment discoveries and transforms research into practice to improve outcomes for individuals with single ventricle heart defects, a complex congenital condition in which a child is born with only one functional pumping heart chamber. Treatment typically involves three surgeries, done within the first three to five years of the child’s life. The last of the three surgeries is known as the Fontan procedure: the heart is reconstructed to divert blood directly to the lungs to be oxygenated and enable the remaining functional heart chamber to pump more oxygen-rich blood out to the body.

The Stollery is the primary cardiac surgical referral centre for the western Canadian provinces and territories, performs about 20 Fontan surgeries each year and currently provides follow-up care for over 100 Fontan patients. 

Despite being a large program in Canada, joining the FON is a big step for researchers to help kids and their families. “Single-ventricle defects are relatively rare, so an individual centre like ours, as well as other large programs, don’t have enough patients to do high-quality research and quality improvement projects,” says cardiologist and Stollery Science Lab Distinguished Researcher Andrew Mackie. “Being part of the Fontan Outcomes Network allows us to contribute data to a registry, and that registry allows us to participate in research studies, to better understand the early detection and treatment of Fontan-related complications.” 

Over the past 50 years, researchers and care teams have made extraordinary advances in treatment for people with single ventricle congenital heart defects, and those individuals are living longer than ever. However, care for these individuals can vary from one hospital to another and there are many unknowns about their long-term outcomes. Patients often encounter various lifelong complications that can lead to hospitalizations. The opportunity to share information through the FON could lead to fewer complications and improved patient outcomes. 

Megan Callbeck’s 10-year-old daughter, Lyla, was born with a heart defect. Callbeck is excited about the possibilities the FON could bring. 

“When I was pregnant with Lyla, I was asked if Lyla could be part of a research study and I always say yes to those opportunities,” Callbeck says. “Someone once said to me, ‘This may not help Lyla but you’re going to help the next kid,’ and I held on to that and I truly believe that. Research helps to advance the knowledge that we already have but also to help with the unknown.” 

The Stollery’s FON membership is supported by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute and Alberta Health Services.