Giving birth is a special time in a woman’s life, but for Black women, trying to navigate the experience can be a matter of life and death. The CDC reports that Black women are three times more likely to die from a pregnancy-related cause than white women. Multiple factors contribute to this disparity, from variations in healthcare quality and underlying chronic conditions to social determinants that prevent many Black women from having fair opportunities for economic, physical, and emotional maternal-fetal healthcare.
One indication of the seriousness of PPCM can be measured by the ejection fraction, the percentage of blood the heart pumps out with each beat. A normal ejection fraction number is about 60 percent; with PPCM, it drops to less than 45 percent.
High blood pressure, preeclampsia, diabetes, and older age are all associated with the development of PPCM, but many patients do not have risk factors. Black women are also more likely to develop PPCM — potentially up to three times more likely when compared to white women, according to a recent study.
In recognition of Black Maternal Health Week, we spoke to three brave women who are sharing their stories of PPCM to help others facing similar challenges.
“How could this happen?”
Tina Marsden of Atlanta, Georgia was just 28 when she began experiencing trouble breathing shortly after the birth of her second child. An emergency room visit led to a diagnosis of walking pneumonia, but Marsden’s symptoms worsened. Knowing to advocate for herself, Marsden insisted doctors conduct multiple tests and was diagnosed with PPCM. If that news wasn’t devastating enough, she was told she would not live to see her son grow up. “My initial thought was how could this happen? I’ve always been healthy and athletic,” she recalled. “I wanted answers on what my diagnosis meant, and what I could do to get better.”
Marsden learned there are different ways to treat and live with heart failure including, medications, life-saving devices, or a heart transplant. Her doctors tried various approaches over several years. Marsden did her part, too, by changing her diet and walking 30 minutes daily. She was ultimately fitted for the Abbott HeartMate II heart pump (also known as a left ventricular assist device or LVAD) which has kept her alive for over two decades. Marsden now serves as a peer support specialist and legislative advocate working to educate mothers facing the same diagnosis on resources and available solutions; her sons are now 30 and 22.
“Quitting is never an option”
In her 30’s, Tracey Young of Chicago, Illinois, was overweight and in poor health. In 1997, following her second pregnancy, Young was diagnosed with PPCM and told she wouldn’t live to see her daughter grow up. “My first thought was fear,” she says of the diagnosis. “I was afraid to die and concerned about leaving my husband alone to raise our children.” Her son was two and her daughter was just six weeks old. Feeling defeated, Young began to get her affairs in order and plan her funeral. She prayed and asked God to help her fight for her life.
Young followed her doctor’s medical advice and made significant dietary changes, losing 75 pounds. Despite seeing improvements, old habits and the weight gradually crept back. She began missing medication doses and doctor’s appointments, and the familiar symptoms returned, leading to hospitalizations. She was repeatedly warned that her health would only deteriorate but ignored the warnings. In October 2007, Young hit the wall. “I could no longer work my job as a social worker or walk short distances due to severe shortness of breath,” she recalls. “Simple tasks like showering became overwhelming. My husband and daughter supported me with daily activities like dressing and cooking.” In 2008, she suffered a second heart attack. Staring death squarely in the face, her mother reminded her in the ICU that she had kids to raise. Those words ignited a fight and she adopted the mantra, “Quitting is Never an Option.”
In 2012, Young was implanted with the Abbott HeartMate II LVAD. Despite the doctor’s predictions, she witnessed her daughter graduate from college, but the joy hasn’t been without sorrow. In April 2023, the Youngs lost their 26-year-old son, Frank Jr., to a massive heart attack. The LVAD has empowered Young to achieve goals she once deemed impossible, including completing a 3k run (even though she walked). She works out regularly at the gym, lifts weights, explores outdoor trails, and prepares healthy meals for her family. Young founded the non-denominational But God Ministries in Wheaton, Illinois, and a women’s empowerment ministry called W.E.A.P. (Women of Excellence, Ambition, and Purpose) to educate and uplift women, especially young women, to recognize their worth and prioritize their health before a significant medical crisis. “On June 10, 2024, my name was finally added to the national registry for heart transplants,” says Young. “It took me 4,440 days to achieve this goal.”
“My story is far too common”
Tiara Johnson developed PPCM in her late 20’s during the last month of her second pregnancy. Before she could be listed for a heart transplant, the doctor told her she would have to lose 100 pounds. “Adjusting my lifestyle wasn’t just about what I ate or how I moved, it was a mental, emotional, and physical battle,” she says. A nutritionist helped her understand her body with the condition, and she focused on heart-healthy nutrition, portion control, and building sustainable habits. “Every bite became a choice to fight for my life. Every pound I lost was hope for me. As the scale changed, so did my thought process.” She still follows a cardiac diet but confesses to an occasional Oreo.
To manage the disease while she waited on the heart transplant list, doctors implanted the Detroit mom with both the Abbott HeartMate 3 left ventricular assist device (LVAD) that allowed her heart to heal and the Abbott CardioMEMS, a sensor device the size of a paperclip that remotely flags early warning signs of worsening heart failure to her care team. At 31, Johnson successfully underwent transplant surgery. While she no longer has a heart pump, she continues to rely on the sensor to monitor her heart health. Today, now living in Missouri, her faith, determination, and life-saving technologies, plus the support of her husband and daughters, 17-year-old, Aranee’ and 9-year-old A’zuri, keep her grounded and focused. She is also committed to helping educate others about black maternal health through @pulsewithpurpose (currently on Facebook, Instagram, TikTok and YouTube), a space for women living with heart failure to talk about and navigate their care journey.
“The most difficult part about living with PPCM is feeling invisible in a system that wasn’t built to protect us,” Johnson explains. “My story is far too common — being dismissed, misdiagnosed, and sent home when I knew something was wrong.” As Johnson says, she didn’t choose this diagnosis, “but I’ve had to carry it while also carrying the burden of racial bias in healthcare. The hardest part hasn’t just been the physical illness—it’s been surviving a system that overlooks black women’s pain and then trying to heal in a world that keeps asking us to be strong without giving us the support or safety to do so.”
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