The story behind a misunderstood and often misdiagnosed heart condition that's affecting Canadian women.
Best Health|August/September 2021
Sudi Barre is a young, healthy, fit woman who, immediately after giving birth, suffered a heart attack. Then she had seven more.
SADAF AHSAN

In the months leading up to the birth of her first child, Sudi Barre, a 36-year-old former social worker who lives in Edmonton, was told by her doctors that she was a “textbook ideal pregnancy.” Healthy and fit, she was still working close to her due date and even hiking up until a week before. “I was feeling uncomfortable with how comfortable I was,” she recalls now with a small, knowing smile.

But on a warm morning in August 2017, while recovering in hospital from an emergency Caesarean, Barre began to experience excruciating pain down her neck, between her shoulders and down her arm to her elbow. She couldn’t breathe, and she was worried she wouldn’t survive to hold her child. At first, she was told by a nurse to “walk it off.” But eventually, the attending physician ordered an electrocardiogram (ECG), which revealed Barre had experienced a heart attack. Doctors placed a stent in her heart, but things only grew worse as she then experienced what she estimates was at least another seven heart attacks over several weeks. The medication—along with the pain and fear—was copious.

After later being transferred to the Mazankowski Alberta Heart Institute, Barre was diagnosed with spontaneous coronary artery dissection (SCAD), the result of a tear in an artery wall, which leads to blood building up between the layers of the wall and blocked or reduced blood flow to the heart. That, of course, can lead to a heart attack or cardiac arrest. Dr. Sharonne Hayes, a cardiologist, professor of cardiovascular medicine and lead researcher for the Mayo Clinic SCAD Research Program, puts it simply: “I have sometimes described the dissection as like a blister within the layers of the artery. It can hurt as the layers of the blister split and the pressure builds up like a bruise. If it fills up and bulges enough, it can block the flow of blood going past it or, if the pressure builds up, it can burst open, leaving a free layer of artery that can also flap around to obstruct blood flow.” To mitigate the issue for Barre, whose heart function had dropped to just three percent, a mechanical pump called a left ventricular assist device (LVAD) was implanted to help her heart pump blood.

According to the Heart and Stroke Foundation, 90 percent of all SCAD cases are women between the ages of 30 and 60. Most are young and healthy. And although the cause of SCAD is still unknown and there are no warning signs, people who are most at risk include pregnant and postpartum women, those with fibromuscular dysplasia (FMD) or connective tissue disorders and those who experience considerable mental and physical stress, all of which can lead to weakened artery walls. Surgery can be high-risk, and treatments are conservative. These include taking beta blockers to reduce blood pressure or Aspirin to lower the risk of a clot forming in your torn artery. If the tear is severe, surgery can mean an angioplasty, an implanted defibrillator or a coronary artery bypass grafting. The current mortality rate is estimated to be about 70 percent, while the recurrence rate is two to three percent per year.

The diagnosis was difficult for Barre to grasp. It left her in the hospital for a total of eight months—the first eight months of her child’s life.

“I felt detached. I was still recovering from the Caesarean,” she says today. “It all happened so fast. How do you process that and then decide to move forward? I hadn’t experienced such a massive health challenge before, so I was in shock for most of it. By the time I got the diagnosis, I was in such disarray, mentally and physically. I went to the hospital to deliver, and here I am, weeks and weeks later, with the doctors not knowing how to manage my pain.”

Of all the stats and figures associated with SCAD, the one that never leaves Barre’s mind is the number 17. That’s her ranking in the list of Canadian patients to officially be diagnosed with SCAD, which shows just how little awareness there was by the time she gave birth in 2017. Although uncommon—it’s estimated to be the cause of one to four percent of heart attacks overall— SCAD is nonetheless the leading cause of heart attack among who are pregnant, women who have recently given birth, and women under the age of 40 in general. In fact, SCAD has long been under- and misdiagnosed, as it can be difficult to detect on angiograms, and blood thinners and stents can actually do more harm than good, creating more tearing in the heart’s artery walls.

“SCAD is a perfect example of where we need to do so much more with respect to research,” says Dr. Paula Harvey, director of cardiovascular research and physician-in-chief of medicine at Women’s College Hospital in Toronto. “Then we can increase awareness and learn how it differs across different populations and how it’s best diagnosed and treated. The research that has been done over the past decade suggests that SCAD is probably more prevalent than doctors previously understood—and that it complicates our sense of who’s at risk for heart disease. “Not only is it a different way of presenting with a heart attack, but it tends to affect younger women,” Harvey says. “This can build a lot of barriers to women being diagnosed accurately because of the tendency and unconscious bias that young women don’t have heart attacks.”

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