From medical breakthrough to personal impact
Abby (left) and her mother credit a discovery by Dr. Lori West with saving Abby’s life. Since Abby was born with hypoplastic left heart syndrome, a condition often fatal at the time, a heart transplant gave her a ‘chance to live fully.’ supplied
A powerful encounter between Heart & Stroke-funded researchers and the people whose lives were saved through their work
Over 3.5 million people in Canada – across ages, ethnicities and genders – are affected by heart disease and stroke.
Yet these numbers don’t tell the full story. Shining brightly against this stark backdrop are beacons of hope: the brilliant minds who are redefining what is possible for heart disease and stroke.
“Researchers make breakthrough discoveries that have saved – and continue to save – the lives of Canadians,” says Dr. Ryan Perry (PhD), vice president, research and science at Heart & Stroke. “Since 1952, the death rate from heart disease and stroke has been reduced by 75 per cent – amounting to five million lives saved.
“The past seven decades have seen significant advances in how we prevent, diagnose, treat and support recovery from heart disease and stroke,” he explains. “The driving force behind each of these lifesaving interventions are researchers; they are the unsung heroes.”
Feedback from researchers confirms their appreciation of the funding and support from Heart & Stroke, and there is another common refrain, says Dr. Perry. “What drives their passion is the opportunity to make a difference in the lives of Canadians.”
“The ability to transplant infant hearts from incompatible donors meant the donor pool increased significantly. Over the next two years, we saw a decrease in the number of babies dying on the wait list from more than 50 per cent to less than 10 per cent.”
An inspirational encounter
Researchers whose breakthroughs have saved thousands of lives don’t always get to meet the people they’ve helped – let alone hear their stories first-hand. Last summer, Heart & Stroke set out to change that.
They invited dozens of people living with the impact of heart disease and stroke, along with their families, to meet the researchers behind the breakthrough that saved their lives. The twist? The researchers had no idea. They believed they were simply being interviewed about their work. Instead, they were met with hugs, tears and heartfelt stories from those who had been given a second chance at life thanks to their discoveries.
Among the surprised researchers was pediatric cardiologist Dr. Lori West, whose pioneering work proved that infants could safely receive heart transplants from donors with different blood types. She met the children and families whose lives were forever changed by her findings.
Another was Dr. Michael Hill, a stroke neurologist whose work on the ESCAPE trial alongside a team of researchers led to the adoption of endovascular treatment (EVT) as a minimally invasive procedure now used to treat ischemic strokes by removing clots and restoring blood flow. He came face to face with stroke survivors who owe their recovery to his groundbreaking work.
Heart disease: The babies who lived because Dr. West dared to challenge the status quo
Among the people eager to meet their heroes was Abby. When she was born, Abby was diagnosed with hypoplastic left heart syndrome, a rare condition that was often fatal at the time. She underwent a three-stage surgical process intended to help her heart function.
The first surgeries initially saved her life, yet by the third, she was in heart failure: Abby’s only hope was a transplant. Waiting for a donor organ, her family moved to Toronto, living between SickKids Hospital and a nearby apartment for three months, while Abby experienced low oxygen and poor blood flow that left her lips, fingers and toes purple. Even simple activities like colouring drained her energy.
Then the day arrived: Abby got a new heart. The family stayed six more months in Toronto after the transplant, so she could be monitored and treated for complications. Eventually, they got the green light to move back home, where Abby could start kindergarten.
Abby was able to start a new chapter, fuelled by the strength and vitality of her new heart, in a story that illustrates the powerful impact of a breakthrough discovery in transplant medicine, made by Dr. Lori West 30 years ago.
Part of Dr. West’s inspiration came from the desire to address conditions like Abby’s. “Previously, it was often referred to as ‘the worst heart disease,’ because there was no cure for it,” she recalls. “In the early 1990s, we would counsel parents about three options. The first was to do nothing, and their baby would pass away. The second was a series of heart surgeries over a few years. Even then, the results were pretty grim.”
“Untreated, mortality is very high. But after [endovascular treatment], in some cases, people were walking out of the hospital two days later. ”
The third option, a heart transplant, promised better outcomes. However, finding a donor organ was often “unlikely,” says Dr. West, who recalls one baby’s death because she had to turn down a donor offer. The reason? It was the wrong blood group.
According to a longstanding rule, the recipient’s and the donor’s blood type had to be a match in organ transplantation. “This was a sacrosanct barrier. You wouldn’t even let your mind go there, that you could cross the ABO [blood group] barrier,” she says. “But as I learned more about it, I realized that the rules were based on certain assumptions.”
In her research, Dr. West found that babies, due to their immature immune systems, do not yet generate antibodies against other blood types. This insight – paired with a high waitlist mortality for these infants – inspired her to ask: Could a baby accept an organ from a donor with a different blood type?
As Dr. West gained confidence in her theory – through reviewing the literature, running tests and consulting with colleagues – there came an opportunity to turn these insights into a lifesaving intervention.
A very sick baby named Caleb with hypoplastic left heart syndrome, just weeks old, had the chance to receive a donor heart with an incompatible blood type.
When his parents gave their consent, Dr. West took her place alongside the surgical team at SickKids Hospital for this first-of-a-kind infant heart transplant. As Caleb returned to the intensive care unit after the successful surgery, his father said, “What a wonderful Valentine’s Day.” It was February 14, 1996.
“The ability to transplant infant hearts from incompatible donors meant the donor pool increased significantly. Over the next two years, we saw a decrease in the number of babies dying on the wait list from more than 50 per cent to less than 10 per cent,” says Dr. West. Today, the practice is routine at pediatric transplant centres worldwide.
Few impacts of research “are quite as deeply meaningful as when you can say, ‘this discovery actually had a direct impact on these families and these children, in the real sense of life and death,’” she notes. “Around the time he turned 18, Caleb wrote to me on Valentine’s Day: ‘I thought this would be a good time to just say thank you for my life.’”
For Abby, the heart she received carried her into sports competitions, including the Canadian and World Transplant Games, around the globe for travel, across the stage as the valedictorian at her school graduation and through university. Now, 19 years post-transplant, she makes time for sharing her journey as a passionate advocate for Heart & Stroke and BC Transplant.
“The gift of life gave me the chance to live fully, to give back,” says Abby, “and to inspire others to believe in what’s possible.”
Stroke: Mark reclaimed his passions because Dr. Hill followed a promising lead
At 55, Mark Friesen was a healthy and active executive, who had just returned from a business trip to Asia. When he took a break from trimming trees in his yard for a moment with his wife and son, everything changed.
“I had a stroke,” says Mark. “In that instant, everything was different. I couldn’t speak, not even my name or my birth date. It was terrifying.”
After being rushed to Vancouver General Hospital, Mark learned he had a hole between the chambers of his heart. A blood clot had slipped through the opening and travelled to his brain, triggering an ischemic stroke. Quick action at the hospital included endovascular therapy (EVT).
A year later, Mark’s outlook further improved when he had a successful procedure to close the hole in his heart to prevent future clots from reaching his brain. The stroke, however, continued to affect his life. It left him with aphasia, a language disorder that impacts speech and verbal comprehension, a daily challenge made easier with support from his family.
“Getting healthy happens step by step; every small step forward matters more than you think,” says Mark, whose determination allowed him to move ahead – and reclaim activities he loves, such as playing golf and riding his dirt bike. “I’m still swinging my clubs and feeling the wind – and that makes me happy.”
From the recognition that he owes his recovery to groundbreaking treatment, Mark recently had the opportunity to thank Dr. Michael Hill for his work on EVT.
“I’m so grateful,” Mark says. “I’m still here.”
Dr. Hill finds inspiration in such outcomes. “It’s fantastic to hear people are recovering so well and being able to get back to their lives,” he says, recalling that in the early 1990s, there were no treatments available for people suffering an ischemic stroke. Patients were about twice as likely to die from a stroke than they are today – and those who survived often depended on caregivers for the rest of their life.
The idea for the ESCAPE trial came as Dr. Hill – in collaboration with Dr. Mayank Goyal, a neuroradiologist, and Dr. Andrew Demchuk, a stroke neurologist – discovered remarkable results from the use of EVT.
“If someone comes into the emergency room paralyzed and you do a procedure – and then they pick up their hand, give you a high five and say, ‘Thanks, Doc,’ you know something’s going well,” he says. “Those high fives actually happened – and continue to happen around the country.
“The outcomes were dramatic: EVT reduced the number of deaths by half, and for every four people you treat, one additional patient recovers well enough to carry out everyday activities independently,” says Dr. Hill. “These are the worst types of ischemic stroke – the big, bad ones, where you are completely paralyzed, and you can’t speak, and you’re nearly unconscious. Untreated, mortality is very high. But after EVT, in some cases, people were walking out of the hospital two days later.”
A decade later, between 25 and 30 hospitals perform EVT across Canada. “EVT is widely used in major health systems globally,” says Dr. Hill, who welcomes another legacy of the study. “More people are interested in getting involved and treating stroke.”
For his role in this trajectory, Dr. Hill will be inducted into the Canadian Medical Hall of Fame later this year.
Accelerating the impact of breakthrough discoveries with a community of support
Both Dr. West and Dr. Hill say funding from Heart & Stroke was essential to bringing their research to the point of impact.
As Heart & Stroke celebrates the outstanding contributions of the researchers, there is another group that deserves recognition, emphasizes Dr. Perry. “We couldn’t do any of this without the support from our donors. Their generosity allows us to invest in new discoveries and innovations.
“Heart disease and stroke are on the rise due to Canada’s aging population and more younger people being diagnosed with the conditions. As a result, new challenges continue to emerge,” Dr. Perry explains. “We have more data, new technologies and modern tools at our disposal, but continued investment is critical for building on and sustaining this progress and driving future innovation.”
Dr. Perry has also seen a change in “how we approach research questions today.” It includes bringing together different perspectives – researchers, health-care professionals, governments, volunteers, corporate partners and people with lived experience – to foster collective action.
“We need all these voices to help understand gaps in knowledge, barriers to innovation and the most promising areas that align with urgent health needs in society,” he says. “We have a very methodical review process in place to ensure we make the best decisions to steward donor dollars. That’s how we can continue to bend the curve of heart disease and stroke.”
Meanwhile, Dr. Hill and Dr. West continue their work. Still focused on stroke outcomes, Dr. Hill has new clinical trials underway. Dr. West’s lab now works almost full-time on research related to the ABO blood groups with the goal to take another “step forward – including for heart transplants beyond infancy,” she says.
“We always need to do better, and we can only make advances with continued research.”
To learn more about how you can help fund the next big breakthrough, visit heartandstroke.ca.
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