When Cathy was 41 weeks pregnant, medical professionals were sure she was developing preeclampsia. Fearful of the complications, they recommended inducing birth, which led to 57 hours in labor, a steady stream of fluids and an eventual C-section.
All of which likely exacerbated the real problem: Cathy had undiagnosed peripartum cardiomyopathy (PPCM), a rare but life-threatening form of heart failure that can develop in the last month of pregnancy or in the first five months postpartum, according to the American Heart Association.
Five days postpartum and unable to catch her breath, Cathy went to the emergency room where the doctor ruled out a heart attack, stroke and pulmonary embolism. Even though blood work revealed an elevated cardiac enzyme and her severely swollen lower extremities should have signaled a problem, Cathy says the doctor was dismissive.
“He looked at the CAT scan and he was like, ‘Well maybe you have some mini lung collapses because of the C-section and all the fluid, so just try to take really deep breaths and try to walk more,'” Cathy recalls to Motherly.
During a follow-up with her general practitioner two days later, Cathy says it took just “30 seconds” of listening to her heart for her doctor to determine something was wrong. Back at the hospital, an echocardiogram confirmed the PPCM diagnosis and she was given prescriptions for medications that immediately began helping.
For hundreds of new mothers, the outcome is worse. According to a new study in the journal Circulation: Heart Failure, rising rates of heart failure among postpartum women is contributing to rising maternal mortality rates in the United States—with 26% of pregnancy-related deaths attributable to heart conditions.
Cathy’s experience is representative of why this continues to occur: As multiple studies have shown, women are more likely to be misdiagnosed when they are having a cardiac event than men. Much of this is because men’s cardiac symptoms often present in the more “typical” way with chest pain or shortness of breath. Meanwhile, women are more likely than men to have symptoms of nausea or to have pain in the neck or back.
“Doctors may be more likely to attribute those symptoms to anxiety than heart disease,” said Kim Lavoie, a professor of psychology at the University of Quebec at Montreal and co-author of a 2016 study on the topic. “So, in other words, a diagnostic bias may occur.”
This is true across the board for women and especially so among young women—including new mothers—who are not viewed as being at risk for cardiac incidents. But as the recent findings have shown, this is a dangerous assumption.
In her case, Cathy says it seemed medical professionals were too quickly satisfied with the explanation of preeclampsia. “I kept saying, ‘We don’t have this. It’s not what I’m feeling, regardless of what they labs might be saying, this isn’t what I’m experiencing,'” she says, explaining her elevated resting heart rate should have signaled there was more at play. “Even if someone just said, ‘Let’s do an echocardiogram just to check’… We could have left the hospital after the C-section with meds instead of having to figure it out.”
Five months out from her diagnosis, Cathy continues to take medication to manage the condition and copes with daily side-effects of fatigue. Still, she says she considers herself lucky that her situation wasn’t worse, especially after connecting with a community of PPCM survivors and learning just how dire it could have been if she hadn’t advocated for more care.
That’s why she’s now passionate about raising awareness—and encouraging other families to stand up for themselves if they feel a diagnosis isn’t right. Rare as a condition like PPCM may be, she says, “If you know someone who’s pregnant, just tell them… this is actually a thing.”