While Black Maternal Health Week has passed, the conversation and the work behind the movement goes on. Tiara Johnson has made it her life’s mission to help other Black mothers receive quality maternal health care.
At just 25 years old, Johnson was diagnosed with Peripartum Cardiomyopathy (PPCM): heart failure that happens in the last month of pregnancy or within the first five months after giving birth. Years of heart failure required Johnson to get a heart transplant to save her life. Now, she’s a volunteer for the American Heart Association’s Go Red for Women.
“Black women are more than three times more likely than white women to die of cardiovascular-related pregnancy complications”
The American College of Cardiology report shows that cardiovascular disease is the leading cause of maternal death in the U.S. The Centers for Disease Control CDC tells an even more alarming story – Black women are more than three times more likely than white women to die of cardiovascular-related pregnancy complications.
“Hearing that statistic hurts my heart every time,” Johnson said. “It’s not just a number – it’s people. It’s mothers, daughters, sisters, friends. Women who look like me. Women who, in many cases, weren’t heard, weren’t taken seriously, or didn’t have access to the care they needed.”
Johnson said she feels angry and sad for those who have experienced what she has. Johnson told the American that during her prenatal care medical visits, she was in so much pain. She couldn’t breathe, and left the same way she came with no answers.
“I know what it’s like to be dismissed when your body is telling you something is wrong,” she said. “So when I hear that Black women are still three times more likely to die compared to other races, it reminds me why I keep doing this work.”
She believes her life was saved to encourage other women to advocate for their health.
After her diagnosis, Johnson’s first reaction was a mixture of shock, confusion, and fear. She had never even heard of PPCM, and then to be told it was full-blown congestive heart failure only fueled her anger. PPCM is often undetected because the symptoms mimic what many consider “normal” postpartum experiences, like fatigue, shortness of breath, or swelling.
She began to reflect on everything that happened. She thought to herself, ‘I did everything right, I sought help multiple times.’ I think a part of me will always wonder if they had caught it the first time I went to the ER, would I have even needed a new heart?
Johnson was immediately placed in a life vest, which is an external defibrillator in the event she went into cardiac arrest at home. She was prescribed several medications to help her heart function, and she was told that she couldn’t have any more children because it could be life-threatening. She felt overwhelmed. She had just gotten married the year before, and they wanted more kids.
According to the American Heart Association and Go Red, Black women can face a greater risk of having uncontrolled high blood pressure, having a stroke, or developing certain complications during or immediately after pregnancy. Black women are five times more likely to die from pregnancy-related cardiomyopathy and blood pressure disorders than white women.
The American Heart Association and Go Red for Women are among several groups fighting to raise awareness through the Health Equity Research Network on Disparities in Maternal-Infant Health Outcomes, which seeks to understand the factors disproportionately affecting pregnancy complications and deaths among Black women.
“Being a part of the American Heart Association’s Go Red for Women movement has been an incredibly meaningful experience for me,” Johnson said. “It’s about more than raising awareness — it’s about changing outcomes, especially for Black women.”
Pregnancy-related mortality rates among American Indian and Alaska Native (AIAN) and Black women are over three times higher white women (63.4 and 55.9 vs.18.1 per 100,000). Black women also have higher rates of low birth weights and infant mortality and are more likely to receive late or no prenatal care compared to white women. Also, Black women are more likely to develop certain pregnancy-related heart problems than other women.
Johnson expressed to her physician that she had shortness of breath, chest pain, and fatigue — classic signs of heart failure — but she was continuously brushed off. She was told she had anxiety or was just tired from being a new mom. “But the reality is, bias in medicine is still very present and for Black women, that bias can be deadly,” Johnson said.
From the moment she was diagnosed, Johnson was told that she would eventually need a heart transplant, but couldn’t be listed right away. Her BMI was too high, and her heart was too weak to survive surgery. Johnson’s CardioMEMS and the HeartMate III (LVAD) gave her heart the support it needed while she worked toward a transplant. Eventually, she was healthy enough to be listed. Johnson relied on God and prayer to keep going.
“My new heart is more than a second chance,” she said. “It’s a reminder that healing is possible and that I have a calling on my life to help others make it as well.”
Johnson recommends:
Get a Baseline Before and During Pregnancy
Make sure your heart health is being checked early. Ask your provider to monitor your blood pressure and, if possible, request an echocardiogram if you have risk factors. Advocate for a cardiology consult if something doesn’t feel right.
Know the Warning Signs
Learn the symptoms of PPCM — shortness of breath while lying flat, rapid weight gain, swelling in your legs or belly, persistent coughing, extreme fatigue, or feeling like your heart is racing or pounding. These are all red flags, not just normal postpartum things.
Address Underlying Health Conditions
Conditions like high blood pressure, diabetes, and obesity increase your risk. If you’re managing any of these, work with your healthcare provider to keep them under control before and during pregnancy. Lifestyle changes can make a huge difference.
Demand to Be Heard
Unfortunately, Black women are often dismissed when we speak up about our pain. Be persistent. Bring someone with you to appointments if needed. Keep a journal of your symptoms. And don’t hesitate to get a second opinion.
Build a Health Support System
Whether it’s a community health worker, a doula, a patient advocate, or a trusted nurse, surround yourself with people who understand your risks and will stand in the gap when the system fails you.
“After surviving, I made a promise to God and myself that I would use my story.
I’ll keep using my voice until the women in my community no longer have to fight so hard to survive.”