"As women get older, birth outcomes get worse," Lu said. Pregnancy-related deaths per 100,000 live births (the pregnancy-related mortality ratio or PRMR) for black and AI/AN women older than 30 was four to five times as high as it was for white women. The dangers of sporadic postpartum care may be particularly great for black mothers. She made an appointment to see the OB/GYN for the next day, then ended up being too overwhelmed to go, the visiting nurse noted on Jan. 18. While they ate, they talked about a trip Shalon had planned for the three of them to take in just a few weeks. "If I was the doctor taking care of her, I'd be like, 'Oh, this is going to be a tough one,' " her OB/GYN friend McDonald-Mosley said. For a long time there was "this baked-in assumption" that there was something different genetically among black women leading to their higher rates of maternal mortality, he says. Twelve hours later, she collapsed. Shalon nagged her father to stop smoking and her mother to lose weight. ", Shalon personified excellence, Wanda said. She handed the baby to one of Shalon's CDC colleagues and took the small stage. At home over the next couple of days, Wanda noticed that one of Shalon's legs was larger than the other. "There were many mornings where she would stand outside banging on the door wanting to come back into the house because she didn't want to go to school," her mother recently recalled. No one knows what causes fibroids or why blacks are so susceptible. What is known is that the tumors can interfere with fertility — indeed, black women are nearly twice as likely to have infertility problems as whites, and when they undergo treatment, there's much less likelihood that the treatments will succeed. NPR and ProPublica collected 200 stories from African American mothers and found that unconscious bias in health care was a "constant theme.". When it came time to go away to college, she chose the historically black Hampton University in Virginia. Over and over, black women told of medical providers who equated being African-American with being poor, uneducated, noncompliant and unworthy. Much of Shalon's pressure was self-imposed: She was pursuing a double Ph.D. in sociology and gerontology, focusing on themes she would return to often — the long-term effects of early-childhood trauma and maltreatment, the impact of the parent-child relationship on lifelong health. It's supposed to be beautiful.") Both tests came back negative. "One modality is just not enough. Even Shalon's many advantages — her B.A. That is especially true for someone with a history of hypertension and multiple other risks. She drained the "fluctuant mass" (as her notes described it), and "copious bloody non-purulent material" poured out from the 1-inch incision. Put another way, a black woman is 22 percent more likely to die from heart disease than a white woman, 71 percent more likely to perish from cervical cancer, but 243 percent more likely to die from pregnancy- or childbirth-related causes. Mothers aged 40 and over have a pregnancy-related death rate of 76.5 per 100,000 live births. Wanda moved into Shalon's tidy town house to care for Soleil. In 2006, the maternal mortality rates in California and Texas were within one percentage point of each other. Infographic: Racial/Ethnic Disparities in Pregnancy-Related Deaths — United States, 2007–2016 The child of two Dartmouth graduates, she grew up in Portland, Ore., where her father's father was pastor of a black church. Women who died during childbirth itself typically suffered severe bleeding or what's called an amniotic fluid embolism, where amniotic fluid leaks into the mother's bloodstream. The United States has the worst rate of maternal deaths in the developed world, and for Black … ". Because for so long it was just dark clouds and rain. But like most pregnant women, she didn't have a postpartum care plan. The nurse's notes confirmed Shalon had swelling in both legs, with more swelling in the right one. Sometimes Samuel held Soleil, or one of Shalon's friends. "It was just trusting in the system that things were gonna go OK," Wanda said. ", As Soleil got older, Wanda looked forward to doing the kinds of things with her that Shalon had looked forward to: reading to her, traveling with her, taking her to gymnastics and music classes. ", That's a concept that professional organizations and providers have barely begun to wrap their heads around. The fact that someone with Shalon's social and economic advantages is at higher risk highlights how profound the inequities really are, said Raegan McDonald-Mosley, the chief medical director for Planned Parenthood Federation of America, who met her in graduate school at Johns Hopkins University and was one of her closest friends. "She wanted to expose how people's limited health options were leading to poor health outcomes," said Rashid Njai, her mentor at the agency. On a melancholy Saturday this past February, Shalon Irving's "village" — the friends and family she had assembled to support her as a single mother — gathered at a funeral home in a prosperous black neighborhood in southwest Atlanta to say goodbye. I'm drinking a lot of water, but I'm retaining the water." Northside decided against an autopsy, telling Wanda and Samuel that there was nothing unusual about Shalon's death, they recalled. "You will always be my most important accomplishment," she wrote. When the nurse measured her blood pressure on the cuff Shalon kept at home, the reading was 158/112. A framed photograph of Shalon in uniform hangs on the wall in her home. 1 Alarmingly, maternal mortality rates for women living in the U.S. are the highest in the developed world with stark racial disparities. When you remember this child, you remember the love that God has pushed down through her for all of us. They were pregnant at the same time. ", This means that for black women, the risks for pregnancy start at an earlier age than many clinicians — and women— realize, and the effects on their bodies may be much greater than for white women. 14 In the United States, pregnancy-related mortality is three to four times higher among Black women than among White women. It was a what-if too painful to dwell on. Becky Harlan/NPR 1 Black women suffer great inequities in maternal mortality. But according to the most recent CDC data, more than half of maternal deaths occur in the postpartum period, and one-third happen seven or more days after delivery. What troubled the nurse most, though, was Shalon's blood pressure. Even though Shalon's villagers fulfilled their pledges at the memorial service, coming by often to give Wanda a break, the first months were borderline unbearable — the baby was colicky, prone to gastric problems that kept both of them up all night. ". Her team at Emory University, one of the premier health systems in the South, had no trouble managing her clotting disorder with the blood thinner Lovenox. She finished in under five years, once again with highest honors — "one of the best writers I've had in my academic career," her adviser, sociologist Kenneth Ferraro, said. In addition, Barfield says that some inequities can be explained by variation in hospital quality. The report came back three months later. But a barrage of medical tests confirmed all was well. Like a lot of expectant mothers, Shalon had an elaborate plan for how she wanted to give birth, even including what she wanted her surgical team to talk about (nothing political) and who would announce the baby's gender (her mother, not a doctor or nurse). ", Shalon took this selfie with her father, Samuel, and Soleil on the morning of Jan. 24. The picture, however, is much worse for black women, who experience maternal death rates at three to four times higher than white women. Under current ACOG guidelines, those readings were high enough to warrant more aggressive action, Tsigas said, such as an immediate trip to the doctor for further evaluation, possibly medication, and more careful monitoring. As Wanda remembers it, Shalon was insistent: "There is something wrong, I know my body. Bianca had her own pregnancy emergency; Everton was born at just 24 weeks. Shalon was very honest. It should have said that black women are 243 percent more likely to die than white women. "It would have made sense to admit her to the hospital for a complete work-up," including chest X-ray, an echocardiogram to evaluate for heart failure, and titration of her medication to get her blood pressure to normal range, wrote one doctor, a leading expert on postpartum care, who agreed to look at Shalon's records at ProPublica's request but asked not to be identified. She plans to keep the trunk for when her granddaughter Soleil gets older. ERASE MM Program plus icon. The United States has the highest maternal mortality rate of any developed country, and African American women like Kira are overly affected. I want you to be happy and smile. "When you interview these doctors and lawyers and business executives, when you interview African-American college graduates, it's not like their lives have been a walk in the park," said Michael Lu, a longtime disparities researcher and former head of the Maternal and Child Health Bureau of the Health Resources and Services Administration, the main federal agency funding programs for mothers and infants. In California, where improvements in care were implemented as soon as the crisis in maternal deaths was recognized in 2005, the overall maternal mortality rate … "They were like the Gilmore Girls," Pryor said. They were missed. ", Now 10 months old, Soleil has her mother's eyes, energy and headstrong yet sweet disposition, coming into Wanda's bed every night and waking her early to play. A few of Shalon's villagers rose to pay tribute; others sat quietly, poring through their funeral programs. Chronic stress "puts the body into overdrive," Lu said. Her research even suggests it accelerates aging at the molecular level; in a 2010 study Geronimus and colleagues conducted, the telomeres (chromosomal markers of aging) of black women in their 40s and 50s appeared 7 1/2 years older on average than those of whites. hide caption. Her discovery in mid-2016 that she was pregnant with her first child had been unexpected and thrilling. Next, Shalon decided to pursue a second master's degree, this time from Johns Hopkins. That imbalance has persisted for decades, and in some places, it continues to grow. Melissa Bunni Elian for ProPublica There's gotta be something wrong.' The story of tennis star Serena Williams is an example of that. ", Raegan McDonald-Mosley was one of Shalon's closest friends. Wanda Irving holds her granddaughter, Soleil, in front of a portrait of Soleil's mother, Shalon, at her home in Sandy Springs, Ga. Wanda is raising Soleil since Shalon died of complications due to hypertension a few weeks after giving birth. The researcher working to eradicate disparities in health access and outcomes had become a symbol of one of the most troublesome health disparities facing black women in the U.S. today: disproportionately high rates of maternal mortality. It's harder than you want. There, she discovered she'd gotten pregnant by accident. "Striving for excellence is a choice," she told the audience through barely suppressed tears. It's being followed around when you're shopping at a nice store, or being stopped by the police when you're driving in a nice neighborhood. The news spread quickly among her colleagues at the CDC. In recent years, as high rates of maternal mortality in the U.S. have alarmed researchers, one statistic has been especially concerning. As women get older, birth outcomes get worse. I know it seems impossible right now, but please do not let this break you. But now many social scientists and medical researchers agree, the problem isn't race but racism. Then they folded it into a precise triangle small enough for Wanda and Samuel to hold next to their hearts. "Her mother is in each and every one of you, each and every one of us. And she decided to write a self-help book, on the theory that many people in the communities she cared about couldn't afford psychotherapy or didn't trust it. In a national study of five medical complications that are common causes of maternal death and injury, black women were two to three times more likely to die than white women who had the same condition. "There's this feeling that we're carrying the expectations of generations, the first ones trying to climb the corporate ladder, trying to climb in academe," Pryor said. Courtesy of Wanda Irving ("It's cheap," Shalon had told Wanda. I'm not voiding. Eventually the colic went away and Soleil thrived. Please try not to cry. At multiple parts of the health care system. Wanda Irving holds a photograph from the funeral of her late daughter Shalon Irving as she goes through a trunk full of her mementos and possessions. The afternoon light was gray but bright, flooding through tall, arched windows and pouring past white columns, illuminating the flag that covered her casket. So far, 13 states have taken the lead, and Schuchat hopes to expand these programs to other states. What's more, racial disparities and the increased risk for black women are not ameliorated by social status, income or education, says Shah. The CDC's principal deputy director, Dr. Anne Schuchat, notes that every death reflects a web of lost opportunities including lack of access to health care, missed or delayed diagnoses, and failures by doctors or nurses to recognize warning signs. "The maternal experience isn't over right at delivery. "To kind of uncover and undo the victim-blaming that sometimes happens where it's like, 'Poor people don't care about their health.' Maternal Mortality Review Information Application; Data Brief From 14 U.S. Maternal Mortality Review Committees, 2008-2017; Preventing Pregnancy-Related Deaths plus icon. But it's the discrimination that black women experience in the rest of their lives — the double whammy of race and gender — that may ultimately be the most significant factor in poor maternal outcomes. Even in states with the lowest PRMRs and among women with higher levels of education, significant differences persist. At multiple levels. Hakima Payne, a mother of nine in Kansas City, Mo., who used to be a labor and delivery nurse and still attends births as a midwife-doula, has seen this cultural divide as both patient and caregiver. Black women had the highest rate of maternal mortality at 42.8 deaths for every 100,000 live births, compared with 32.5 deaths among American Indian and Alaskan Natives and 13 … Here again, income and education aren't protective. By race • According to the CDC’s Pregnancy Mortality Surveillance system, during 2011- 2016 the pregnancy related ratios were: • 13.0 deaths per 100,000 live births for white women • 42.4 deaths per 100,000 live births for black women • 11.3 deaths per 100,000 live births for Hispanic women In one study published earlier this year, two-thirds of low-income black women never made it to their doctor visit. Afterward, Wanda and Shalon clung to each other more tightly than ever. JGI/Tom Grill/Getty Images/Tetra images RF The two used to jog together in Patterson Park, in Baltimore. hide caption, "People say to me, 'She won't know her mother.' In the more than 200 stories of African-American mothers that ProPublica and NPR have collected over the past year, the feeling of being devalued and disrespected by medical providers was a constant theme. ", At 36, Shalon had been part of their elite ranks — an epidemiologist at the Centers for Disease Control and Prevention, the pre-eminent public health institution in the U.S. In the days after giving birth to her daughter, Williams developed a life-threatening pulmonary embolism, or blood clots in the lung, as she told Vogue last year. This indicates that the higher maternal mortality … Black expectant and new mothers in the U.S. die at about the same rate as women in countries such as Mexico and Uzbekistan, the World Health Organization estimates. It may be that cardiovascular symptoms are never identified in these women or that they simply cannot overcome social factors such as a lack of transportation to access health care, she says. The most recent figures, for 2016, show 40.8 pregnancy related deaths per 100,000 live births for … Shalon had spent her adult years defying stereotypes about black women; now she wrestled with the reality that by embracing single motherhood, she could become one. Health Details: According to the CDC, per 100,000 live births, there were 14.1 deaths among Asian women, 30.4 deaths among Indigenous women, and 42.4 deaths among black women, in comparison to 13.0 deaths among white women. Wanda and Shalon were so close, "they were like the Gilmore Girls," one friend said. "I truly think they should. ", A photograph of Shalon with newborn daughter Soleil and mother Wanda is displayed on a shelf in Shalon's home next to the stuffed monkey that was given to Soleil in the hospital after she was born. With his family's support, he had managed to finish college and run a poetry-slam nonprofit for kids. Soleil is our gift.". Suddenly a part of the family's medical mystery was solved. His next goal was to walk across the stage to receive his diploma instead of using his wheelchair. Shalon did so well that she persuaded her doctor to let her and Soleil — French for "sun" — leave the hospital after two nights (three or four nights are more typical). Steeped in research about how social support could buffer against stress and adversity, Shalon joined online groups for single mothers and assembled a stalwart community she could quickly deploy for help. Toward noon, she and Wanda and the baby drove to the Emory Women's Center one more time. Anything that doesn't fit that identity is suspect," she said. Stress has been linked to one of the most common and consequential pregnancy complications, preterm birth. She checked the incision — "warm dry no [sign/symptom] of infection" — and noted Shalon's mental state ("cooperative, appropriate mood & affect, normal judgment"). " Concern about high pregnancy-related death rates among black women has … By then, Shalon had noticed that many of her relatives —her mother's mother, her aunts, her far-flung cousins — had died in their 30s and 40s. There is "an implicit racial bias in health care," Barfield says, and black women often feel they are not being heard when they raise concerns about a particular aspect of their care. If you're gonna pick someone who's going to have a problem, it's gonna be her. "It's the experience of having to work harder than anybody else just to get equal pay and equal respect. African-American life there was often characterized by social isolation, which Geronimus' research has shown to be especially stressful. Shalon and Wanda stopped at the pharmacy, then decided to go out to dinner with the baby. "There were all these opportunities to identify that something was going wrong. CDC Activities; Maternal Mortality plus icon. hide caption. Nothing can break the bond we have and you will forever be my mommy and I your baby girl! I've never seen so many Ph.D.s. Until recently, much of the discussion about maternal mortality has focused on pregnancy and childbirth. More good news: A few weeks later, her friend Pryor learned she was pregnant, too. I went to see them. William Callaghan, chief of the maternal and infant health branch, recalled in March that his boss, who had visited Shalon at the hospital, called to let him know. "So they're saying, 'Well if there's no clots, there's nothing wrong,' " Wanda recalled. The CDC calculated disparities over a course of 10-11 years for black women, finding that there is a significant connection between these disparities and morbidity and mortality rates. Yet, the report concluded, roughly 3 in 5 pregnancy-related deaths are preventable. "There's a perception among many black women that the care they receive during and after pregnancy is different than it is for their white counterparts," she says. Courtesy of Wanda Irving She put Soleil on her lap and said, "I'm gonna read you some letters about your mom." One way of [reaching people] is just not enough. ", Life coach Tran was so upset at Shalon's condition that she took her frustrations out on her friend. The hospitals where they give birth are often the products of historical segregation, lower in quality than those where white mothers deliver, with significantly higher rates of life-threatening complications. Michael Lu, a disparities researcher and former head of the Maternal and Child Health Bureau of the Health Resources and Services Administration. Furthermore, the authors cited data from the CDC Pregnancy Surveillance Study that showed these higher rates of Black maternal mortality are due to higher fatality rates, not a higher number, or incidence, of cases. "she might see the numbers, but I don't think she actually saw that little girl or little boy have a healthier lunch," Pryor said. Time to get up!' Shah co-founded March for Moms Association, a coalition of more than 20 organizations dedicated to increasing public and private investment in the well-being of mothers. Becky Harlan/NPR ". Surgery bought her a little time, but her OB/GYN urged her not to delay getting pregnant much longer. There were worries about money and panic attacks about the difficulties of being a black single mother in the South in the era of Trayvon Martin and Tamir Rice. Pryor had her own pregnancy emergency — her son was born very prematurely, at 24 weeks — so she couldn't be in Atlanta. The maternal mortality rate for women aged 40 and over (81.9 per 100,000 live births) is nearly 8 times that for women under age 25 (10.6). Brown has made reforming postpartum care one of his main initiatives as president of the American Congress of Obstetricians and Gynecologists. She told me, 'No, I'm on my chaise lounge, and that's about as much as I can do.' Again, New York City offers a startling example: A 2016 analysis of five years of data found that black, college-educated mothers who gave birth in local hospitals were more likely to suffer severe complications of pregnancy or childbirth than white women who never graduated from high school. If a village this powerful hadn't been able to protect her, was any black woman safe? In recent years, as high rates of maternal mortality in the U.S. have alarmed researchers, one statistic has been especially concerning. This is adding to her stress as a new mom." The high maternal mortality rate in the U.S. masks dramatic variation by race and ethnicity: the number of deaths per 100,000 births for black non-Hispanic women in 2018 (37.1) was more than two times higher than that for white mothers (14.7). She told me, 'Friend, this is hard.' The letter reads like a premonition: Shalon was contemplating the prospect of her own premature death — and of her beloved mother having to endure one more unbearable tragedy. She noted the process won't be easy and could require remaking systems that have been in place for years. But there's also, 'I'm first-generation; I don't know the ropes; I don't how to use my social capital.' The main federal agency seeking to understand why so many American women — especially black women — die, or nearly die from complications of pregnancy and childbirth had lost one of its own. ", Wanda holds Soleil's hands as she learns to walk. Courtesy of Wanda Irving She set an example, shedding nearly 100 pounds while managing to graduate summa cum laude. "This can mean that effective interventions may not be occurring for black women," she says, or that the timing of the intervention may not be appropriate. In February 2009, while he was doing physical rehab to regain strength in his legs, a blood clot traveled to his lung, killing him at the age of 32. She sat in the front row in a black suit and veiled hat, her face a portrait of unfathomable grief. "And Shalon was not having that at all. "The money is worth so much more there. Ariel Zambelich for ProPublica But Shalon didn't have other symptoms, such as headache or blurred vision. Lost Mothers: Maternal Mortality In The U.S. Black Mothers Keep Dying After Giving Birth. She was like, 'Nope, this is what it is.' And it takes more out of you than you expected it should. "She didn't understand why there was such a disparity with other families that had all these long lives," Wanda said. "She had all these risk factors. What's more, even relatively well-off black women like Shalon Irving die and nearly die at higher rates than whites. Maternal Mortality Rates in the US . The disproportionate toll on African-Americans is the main reason the U.S. maternal mortality rate is so much higher than that of other affluent countries. Shalon had collapsed. At the CDC, it bothered her that she rarely met the people behind the data she was analyzing. "We have the means to identify problems and close gaps and prevent deaths," Schuchat said. The Terrifying Threat To Pregnant Black Women And Their Babies. "It's the same idea as if you keep gunning the engine, that sooner or later you're going to wear out the engine.". The pain medication didn't work: "My mother basically had to scream at the doctors to give me the proper pain meds.". Shalon's father, Samuel, surveyed the rows of somber faces from the lectern. The first doctor she saw, on Jan. 12, said it was nothing, but as she and her mother were leaving his office, they ran into her regular OB/GYN, Elizabeth Collins, whom Shalon trusted completely. Black women are 49 percent more likely than whites to deliver prematurely (and, closely related, black infants are twice as likely as white babies to die before their first birthday). In September 2015, in the midst of an unsuccessful fertility treatment, Shalon was alarmed to discover that her right arm had become swollen and hard. Three weeks after giving birth, Shalon collapsed and died from complications of high blood pressure. Wide racial/ethnic gaps exist between non-Hispanic black (37.1 per 100,000 live births), non-Hispanic white (14.7), and Hispanic (11.8) women, which is consistent with earlier data. While the national rate is 17.4 deaths per 100,000 births in 2018, 37.1 black women died per 100,000 births. The stress and frustration triggered the old corrosive self-doubts. To act on them sooner and they were missed. "No words have been created to adequately capture the fear and love and excitement that I feel right now. "There is this idea that we have to work twice as hard as everyone else. Shalon had left it among the other important items on her computer, trusting that if something ever happened to her, Wanda would find it. "It tells you that you can't educate your way out of this problem. According to … CDC Activities; Maternal Mortality plus icon. The nation’s preterm birth rate has also been on the rise, with black women impacted disproportionately. hide caption. Her excitement was tempered by fear that the baby might have contracted Zika, which can cause microcephaly and other birth defects. 'You guys have to realize she just had a baby. In Shalon's case, the trouble — a painful lump on her incision — started a week after she went home. The estimated national maternal mortality rate in the United States is about 17 per 100,000–but is about 43 per 100,000 live births for Black women. She was passionate about improving food and housing security to reduce people's risk for high blood pressure and other cardiovascular problems. Black women are more likely to be uninsured outside of pregnancy, when Medicaid kicks in, and thus more likely to start prenatal care later and to lose coverage in the postpartum period. "She was all about the village," Njai, her CDC mentor, said. Nationwide, maternal mortality rates more than doubled in the United States between 1990 and 2013, according to the World Health Organization. The sadness in the chapel was crushing. Bianca Pryor, a Bronx-based consumer behavior researcher, became lifelong friends with Shalon. She read voraciously, wrote a column for a black-owned weekly newspaper, and skipped a grade. "She was one of those people — one thing is just not enough," said her co-author, Habiba Tran, a therapist and life coach with a multicultural clientele. 15 "We need to look holistically at the risk factors irrespective of whether or not she had a diagnosis of pre-eclampsia," Tsigas said. Pregnant and postpartum women need to understand warning signs so they can identify problems early on and seek timely treatment, the CDC report warns. Shalon got through the physical challenges surprisingly well. She took the blood pressure medication from Wanda and got ready for bed. A photograph of Shalon with newborn daughter Soleil and mother Wanda is displayed on a shelf in Shalon's home next to the stuffed monkey that was given to Soleil in the hospital after she was born. ERASE MM Program plus icon. It's everywhere; it's in the air; it's just affecting everything," said Fleda Mask Jackson, an Atlanta researcher who focuses on birth outcomes for middle-class black women. 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