When it comes to congenital heart defects (CHD), many assume Canada has high detection rates. Unfortunately, reality paints a different picture. According to Amy Porter, Executive Director and co-founder of Tiny HeartsCan—a member of the Health Innovation Hub—detection rates, especially in rural areas, are alarmingly low.
“In urban centers, our detection rates are about 63% for finding heart defects, and in rural areas, it’s 37%,” Amy explains. Considering that CHDs are the most common birth defects—affecting approximately 1 in 100 births—these low detection rates are alarming. Even more surprising? Tiny HeartsCan is the only charity in Canada dedicated to improving prenatal CHD detection.
The Tiny Heart that Started It All
Amy’s passion for this cause is deeply rooted in personal experience. In 2020, during a 28-week ultrasound, her unborn son was diagnosed with a rare critical heart defect—Transposition of the Great Arteries (TGA).
“His condition made it so that he had two separate circulatory systems – his main arteries grew in the wrong orientation. So, his first surgical intervention, called a balloon septostomy, was at two and a half hours old where they had to race a catheter into the inside of his heart and rip a hole between the top two atria, and this allowed oxygen to reach the other side of his heart and, therefore, his limbs. That procedure stabilized him until his open-heart surgery at seven days old.”
Amy shared that her son’s diagnosis was initially missed during both the 20-week ultrasound and a follow-up appointment. It was eventually discovered by chance at a 28-week ultrasound, which was scheduled due to Amy’s larger than usual torso measurements—completely unrelated to TGA.
“Being able to expand into all of Western Canada would be an amazing feat.”
Turning Questions into Actions: Advocacy through Awareness
Today, Amy’s son is a healthy, energetic four-and-a-half-year-old. However, his delayed diagnosis left her with pressing questions.
Why wasn’t his CHD caught sooner?
Could other babies be facing the same risk?
Was I, in any way, responsible?
Amy found comfort in statistics and facts, realizing she wasn’t responsible. “I found out that heart defects, for the most part, have no known cause and occur in low-risk pregnancies.” Her research also revealed a critical gap: sonographers rarely receive ongoing CHD-specific training, particularly those practicing in remote regions.
With a background in education from the University of Alberta, Amy felt compelled to help. She founded Tiny HeartsCan to advocate for improved training, so that sonographers have the knowledge and skills to detect CHDs early.
Growing Impact, Overcoming Challenges
Since launching, Tiny HeartsCan has trained 120 individuals and spoken to over 2,500 medical professionals. Yet, the young charity is still focused on building awareness and securing funding. “A challenge that we often face, because we are so new, is getting organizations and private clinics to see our value.”
As Tiny HeartsCan continues to expand, partnerships and support networks play a crucial role. Incubation programming within the Health Innovation Hub at UAlberta has helped Tiny HeartsCan gain access to resources, mentorship, and opportunities to amplify its reach. By leveraging the collaborative life sciences ecosystem in Alberta, Tiny HeartsCan is working to integrate its training initiatives more broadly across the province and beyond.
“I’m really excited to see how we grow and how we expand, to see how many people we can train within Alberta. There are at least 200 clinics in Alberta that we can go and provide training for,” Amy shares. “Being able to expand into all of Western Canada would be an amazing feat.” Despite funding challenges, she remains optimistic. “I am thrilled with how much we’ve been able to accomplish in our two operational years and seeing what we can do for babies across Canada.”
Amy’s ultimate goal is bold yet simple: to make Tiny HeartsCan obsolete. “Research shows that 90% or more of all heart defects should be seen before birth and if we can reach a 90% prenatal detection rate of heart defects across Canada, I would not be needed.”
For now, Tiny HeartsCan is making a vital difference—one training session, one donation, and one life saved at a time. Through education, advocacy, and community support, Amy and her team are on a mission to ensure critical training is provided to the professionals who can help save the smallest hearts.
To learn more about Tiny HeartsCan and collaboration opportunities, visit TinyHeartsCan.org.
