Calgary clinic specializing in sudden cardiac death helps a growing number of patients

A childhood accident involving an all-terrain vehicle turned out to be a blessing in disguise for Julia Genaille.

When she was just 12, Genaille flipped the quad she was riding at her godparents' farm near Regina and was taken to the hospital as a precaution. Health-care providers didn’t find any injuries caused by the accident, but they did notice a shadow around her heart.

“They did an X-ray and said, ‘I don’t see anything wrong with your ribs and your neck is fine,’” says Genaille, now 20. “But the shadow, along with the fact that I was born with a heart murmur, caused them some concern.”

A few weeks later, Genaille visited a paediatric cardiologist for a followup appointment. That’s when her family got life-changing news.

“I was diagnosed with obstructive hypertrophic cardiomyopathy, and was told I would eventually need surgery, medication and a heart transplant,” says Genaille. “It was quite shocking.”

Hypertrophic cardiomyopathy is a term that describes a group of genetic disorders that results in the thickening of the heart muscle. The condition is relatively common, impacting one in 500 to 1,000 people in Canada, often in family groups.

Patients with the condition can be affected in various ways: from being symptomless to developing an irregular heartbeat or arrythmias to heart failure and even sudden cardiac death. The condition is the most common cause of sudden death in young athletes.

Since her diagnosis, Genaille's care has been extensive: she has an implantable cardioverter defibrillator that can deliver shocks for dangerous arrhythmias; she takes numerous medications and was one of the youngest patients ever to undergo a complex open-heart surgery that involved cutting away some of her excess heart muscle.

Still, Genaille is grateful the condition was discovered when it was because she was a very active individual who experienced very few symptoms, so wasn’t aware that she was at risk of sudden death.

She is also incredibly thankful for the care she has received at the University of Calgary Hypertrophic Cardiomyopathy Clinic (HCM), located at South Health Campus. 

“It has been fantastic,” she says. “They go above and beyond patient care to really knowing me as a person and helping and supporting me.”

About the University of Calgary Hypertrophic Cardiomyopathy Clinic

The HCM takes a familial approach while serving a growing number of hundreds of active patients, one of the largest clinics of its kind in the country.   

“We have a grand vision for the clinic,” says Dr. Grant Peters, MD, clinical director of the HCM and a clinical assistant professor in the Department of Cardiac Sciences at the Cumming School of Medicine (CSM). “We have a multidisciplinary team that meets often and looks collaboratively at how to optimize outcomes for individual patients.”

That dedicated team includes electrophysiologists specializing in arrythmia and sudden death prevention. The team has access to a genetics clinic that conducts comprehensive genetic screening for known genetic variants of HCM and they work with cardiac surgeon Dr. William Kent, MD, who specializes in myectomy surgery to remove excess portions of the heart and relieve obstructions. The team also includes two nurses who organize patient care.

In addition to the clinical excellence, the HCM has a large research component, headed by Dr. Bobby Heydari, MD, a clinical associate professor in the Department of Cardiac Sciences who specializes in cardiac MRI.

Research ranges from involvement in clinical trials to determine the efficacy of new pharmaceutical treatments to investigating potential markers for those at higher risk of sudden cardiac death. The clinic is also involved in national and international registries collecting data on hypertrophic cardiomyopathy patients to study numerous aspects of the disease, such as fibrosis and genetic characteristics.

“We are quite proud of the clinic, there is so much going on,” says Heydari. “It’s an exciting time to specialize in hypertrophic cardiomyopathy.”