The doctor began asking questions about Henderson’s older sister. Henderson found herself suddenly reliving a family tragedy. In 2014, Crystal Brackens-Prieston suffered an unexplained cardiac arrest at 27 years old. Her early symptoms were similar: a cough, difficulty breathing. She died six months after giving birth to her second child. “They had a couple of diagnoses of what they thought it could be,” Henderson says of her sister’s treatment. “But peripartum cardiomyopathy never came up. We never found out what happened to her.” When her own symptoms appeared, Henderson says, “I kept putting it off, and the cough just got worse … And one night I lay down and I felt like I was under water. I couldn’t breathe.” Henderson was scheduled to see her OB-GYN in just a few days, which almost kept her from going to the ER. Her cardiologist would later tell her that waiting could have killed her. PPCM is a relatively rare but serious complication of pregnancy in which the heart muscle weakens. The source of the condition is unknown, but researchers believe it impacts at least one in 2,000 live births in the US. Greater risk for the disease is associated with preeclampsia, twin or multiple births, older maternal age, some genetic mutations, and ethnicity. The risk of developing PPCM for Black pregnant people is considered at least double that of white people, and some studies have found rates up to 16 times higher. Although the majority of patients eventually recover, a significant number have permanent heart damage and need lifelong medication, implanted cardiac devices, or even transplants. For others, the diagnosis results in tragedy. PPCM is one of the leading causes of maternal mortality in the US, listed by the Centers for Disease Control and Prevention as the primary cause of death from one week to one year after delivery. Because PPCM is considered rare, doctors aren’t watching for it, which ironically may mean the actual number of cases is higher than we know. According to a report from the California Pregnancy-Associated Mortality Review Committee, more than 50 percent of PPCM fatalities in the state between 2002-2007 were only diagnosed through autopsy records, and so not recorded as an official cause of death. At the same time, PPCM is only one element of a larger problem. Maternal mortality is declining worldwide, but US rates have nearly doubled in the past two decades, making it the only developed nation seeing an increase. The US now has the highest maternal mortality rate of any G7 country, and the numbers continue to rise—from 658 deaths in 2018 to 754 in 2019. Serious pregnancy complications, known as severe maternal morbidity, are also rising, affecting more than 50,000 individuals every year. The impact on people of color has been especially grave. Black and Indigenous people are currently dying from pregnancy-related causes at two or three times the rate of white people. The CDC has named “missed or delayed diagnosis” as a key factor behind maternal deaths, and cardiologists and OB-GYNs admit that PPCM is often misdiagnosed or ignored. Symptoms like shortness of breath, extreme fatigue, and swelling in the feet and legs can mimic normal pregnancy discomfort, causing patients and doctors to miss the warning signs. But many survivors say that health care providers dismissed their concerns and neglected to order cardiac testing, including a simple blood test that can indicate heart failure. These missed opportunities are especially critical for PPCM patients, as their hearts can grow weaker by the day. Research has shown that the earlier people are diagnosed with PPCM, especially during late pregnancy or the first month after delivery, the more likely they are to recover. This dangerous lack of awareness among physicians was mentioned in a 2019 practice bulletin on pregnancy and heart disease from the American College of Obstetricians and Gynecologists (ACOG), which notes that the “rising trend” in maternal cardiovascular disease appears directly related to diseases like PPCM. The bulletin estimates that if more maternity care providers considered cardiac issues, “a quarter or more of maternal deaths could be prevented.” ACOG’s assessment echoes the opinion of the CDC, which has stated that about 60 percent of all maternal deaths are, in fact, preventable. And in the case of PPCM, at least, doctors may be ignoring an obvious solution.
A pattern of neglect and dismissal
The stories of those diagnosed with peripartum cardiomyopathy often follow a recurring pattern within US maternity care: Providers fail to listen to patients and overlook life-threatening illnesses. The experience of Lacie Ring, a 33-year-old Alabama mother who died on January 9, 2021, is a tragic example. “You have the fairytale of the husband and wife, her pushing, and the baby coming out, and him cutting the umbilical cord,” says Ring’s husband Dan. “That was the polar opposite of our delivery.” In fact, the reality of Ring’s treatment by providers was far from any healthcare ideal. In an account written before her death, Ring described reporting symptoms to her OB-GYN during the third trimester of her pregnancy. The swelling in her feet that never seemed to go away, the shortness of breath, the cough that got worse when she lay down—her doctor dismissed these concerns as normal. At 37 weeks pregnant, Ring’s blood pressure spiked and she was admitted to the hospital, where she says she told nurses she was having trouble breathing. “I remember feeling like I wasn’t being taken seriously,” she later wrote. Similar experiences have been widely reported by people of color in surveys like the 2019 Giving Voice to Mothers study and NPR’s Discrimination in America from 2017. When Ring’s condition didn’t improve, she learned she would need an emergency C-section. “They didn’t let me go in,” Dan Ring recalls. “That was horrible for me. I sat with my head pinned up against the door listening, and then I finally heard a baby crying.” Hours later, Ring visited his wife in the ICU where she stayed for days, sedated and intubated. A week later, she was discharged, still without a firm diagnosis. At home, Ring wrote that her symptoms quickly returned. As she cared for her newborn, she had no idea that what she was feeling was abnormal, that her lungs were filling with fluid, and her heart function was dropping. It would take more than two weeks for Ring to return to the ICU and receive her PPCM diagnosis. After more than 18 months of treatment, she died of cardiac arrest in her sleep. Dan Ring says that within minutes of learning that she had peripartum cardiomyopathy, Lacie began reading about the disease. What she found devastated her: a simple blood test could have diagnosed the condition earlier. The brain natriuretic peptide (BNP) test measures a hormone secreted by the heart in response to pressure or enlargement, which means it can detect conditions like PPCM. The cost of the test ranges from about $15–$250 depending on insurance coverage, in line with many basic blood tests. Dan Ring believes that if Lacie had received the BNP test during pregnancy, “she would still be alive today.” “The BNP test is a fantastic test that is completely underutilized in pregnancy,” says Lisa Levine, an OB-GYN, maternal fetal medicine specialist, and director of the Pregnancy and Heart Disease Program at Penn Medicine. “It has a very good negative predictive value. Meaning, if someone comes in with symptoms, and their BNP is negative, it is very unlikely that they would have cardiomyopathy or any heart condition.” Research on this use of the BNP test is scant, but a South African study presented at the 2020 meeting of the European Society of Cardiology in 2020 suggests the test can both diagnose PPCM and predict the likelihood of recovery. ACOG and some state-run organizations have published guidelines suggesting wider use of the BNP test in patients reporting cardiac symptoms. But it is unclear how often physicians take this advice. There is no mention of the test in the latest edition of ACOG’s Guidelines for Perinatal Care, which instructs OB-GYNs to screen for gestational diabetes, STIs, and several other complications. “If the BNP test is the only test we have, we have to utilize it,” says DeAnna Stewart, a PPCM survivor and president of the group Save The Mommies. Stewart and other advocates believe the BNP test should become a standard screening for all pregnant people. She argues that if providers are currently failing to recognize PPCM symptoms, relying on them as an indicator to order more BNP tests is impractical. “I speak to OB-GYNs. I go to cardiology conferences,” Stewart says. “And I’m pleading with all of them. I just feel like common sense is being lost here. And moms are dying every day.” Stewart’s organization, which she founded in 2017, has become an online community for PPCM support. Calling each other “heart sisters,” members work to raise awareness and organize financial assistance for those unable to afford testing or treatment. But while PPCM experts agree that more testing is needed, especially for high-risk groups, they are skeptical about embarking on a mass testing initiative among the nearly four million pregnant patients in the US every year. “I don’t think that there’s data to support routine testing of all [pregnant] women with BNP levels,” says Kathryn Lindley, a cardiologist and director of the Center for Women’s Heart Disease at Washington University School of Medicine in St. Louis. Lindley points out that PPCM often develops in the postpartum period, even up to five months after delivery. “We don’t know that a normal BNP on the day of hospital discharge would actually identify a woman who would otherwise be diagnosed a month later any sooner.” But Lindley agrees that physicians need to greatly “lower the threshold” for checking BNP levels, and that all healthcare providers should be taught to do more effective screening for cardiac symptoms. Dennis McNamara, a cardiologist, director of the Center for Heart Failure Research at the University of Pittsburgh Medical Center, and a leading PPCM researcher says the issue is not only doing more BNP tests but also correctly interpreting the results. BNP levels can become moderately elevated during pregnancy and for other health reasons, but a “sky high” BNP almost always means heart failure. McNamara feels that widespread BNP testing would undoubtedly lead to more cases being detected. “In part because of the test,” he says, “but that also assumes that both women and healthcare providers are thinking about the diagnosis, and that’s half the battle.”
Systemic barriers to maternity care
Beyond the lack of testing, physicians and advocates say that systemic barriers to accessing maternity and postpartum care make early diagnosis of PPCM much harder. Since many health insurance companies bundle all pregnancy care into a single fee paid at birth, providers have little incentive to do postpartum care beyond a single checkup at six weeks. Medicaid insurance, which funds nearly half of all births in the US, is only guaranteed for 60 days after delivery, leaving thousands of people uninsured for postpartum complications. For people of color, barriers are embedded within health care and social policy at many levels. While it is still impossible to predict who will develop PPCM, medical literature consistently lists African or African-American ancestry as risk factors. However, maternal health advocates have pointed out the important distinction between race and racism as a risk factor for disease; a range of issues—from the cumulative stress of discrimination known as “weathering” to the “food deserts” in Black and brown communities—can underlie health outcomes. But failures at the point of care are a factor, too. A 2019 study co-authored by UPenn’s Levine revealed striking racial disparities. Black people with PPCM were diagnosed later, had poorer cardiac function, ultimately recovered less often, and their recovery process was longer. Rather than any genetic link, Levine says the results suggest that Black patients are receiving lower quality care and often have their symptoms ignored. “So many racial disparities and health outcomes, if not all of them, can be explained by institutional racism,” Levine says. “Whether it’s education, access to health services, access to medication and treatment, implicit or explicit bias on the part of the treating physicians … it’s so deep.” Leslie Farrington, a retired OB-GYN from New York who is now Vice President of the Black Coalition for Safe Motherhood, says that until health care providers confront the many impacts of racism, the conversation about conditions like PPCM will continue to blame the patient in terms of faulty genetics, unhealthy behavior, or lack of involvement in their own care. Maternal health organizations often encourage pregnant people to advocate for themselves, to challenge biased or inattentive providers, and demand diagnostic tests like the BNP. But Farrington warns against “putting too much of the onus on the moms.” She says providers need to start by listening and working toward “a clear-eyed view of why their Black patients deserve a mindful and person-centered approach.” Like many advocates, Farrington supports a greater shift toward midwifery care, which is standard in Europe and elsewhere, as an important step in reducing maternal mortality. Research, including a 2018 study published in PLos One, has shown that midwifery care improves maternal health outcomes, but currently, only about nine percent of US births involve midwives. One successful model is The JJ Way created by British-trained midwife and women’s health advocate, Jennie Joseph. Based in Orlando, Florida, Joseph operates a women’s health clinic and a free-standing birth center, focusing on care that is patient centered, culturally competent, and trauma informed. The results have been dramatic, reducing racial disparities and cutting the cesarean rate of her patients to about half Florida’s average. “We’ve got to recognize that these problems are structural, institutional, and historical,” says Joseph. “This is not about physiology.” Joseph stresses that her model is a hybrid where midwives do prenatal and postpartum care, but most patients give birth in a hospital. “A family practice doctor could do this model. Nurse practitioners could do this model. It’s not complicated,” she says. “Once you treat somebody right, take the fear out of the picture, take the power struggle out of the picture, take the racism, classism, sexism out of the picture, they do fine.” Training more midwives is often proposed as one of the solutions to the maternal health crisis, but Joseph cautions against looking to midwifery for an answer when so many in the US are simply denied basic access to quality care. Facing the ominous maternal mortality statistics, advocates have called for policy changes at every level, from federal public benefits to community-based health programs and more diversity among care providers. A crucial element, they say, is extending postpartum Medicaid coverage to a full year, which legislators are working toward in several states. In February, the Congressional Black Maternal Health Caucus introduced the Black Maternal Health Momnibus Act of 2021, a package of bills addressing maternal health issues and racial disparities. Several previous bills with similar goals have failed to reach a vote. After calls for action by Vice President Kamala Harris and the first presidential proclamation marking Black Maternal Health Week, this package may be more likely to succeed, bringing critical funding for maternal health programs. In the meantime, groups like Save The Mommies attempt to intervene one life at a time. The “heart sisters” are circulating an online petition demanding that the BNP test become a mandatory prenatal screening. Brianna Henderson has fully recovered, though she will need lifelong medication and has an implanted defibrillator, and she raises awareness through her own non-profit, LetsTalkPPCM. Other answers, experts say, may be found in researching the mysterious causes of PPCM and developing more effective treatments. But for patients fighting to regain their health and families shattered by grief, the first step is simpler. “Women are dying,” says Dan Ring, now a single father to his young daughter. “What other research do you need? Just give them the test.”
