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LINDA VILLAROSA
The Hidden Toll: Why Are Black Mothers and Babies in the United States Dying at More Than Double the Rate of White Mothers and Babies? The Answer Has Everything to Do with the Lived Experience of Being a Black Woman in America
from The New York Times Magazine
When Simone Landrum felt tired and both nauseated and ravenous at the same time in the spring of 2016, she recognized the signs of pregnancy. Her beloved grandmother died earlier that year, and Landrum felt a sense of divine order when her doctor confirmed on Muma’s birthday that she was carrying a girl. She decided she would name her daughter Harmony. “I pictured myself teaching my daughter to sing,” says Landrum, now 23, who lives in New Orleans. “It was something I thought we could do together.”
But Landrum, who was the mother of two young sons, noticed something different about this pregnancy as it progressed. The trouble began with constant headaches and sensitivity to light; Landrum described the pain as “shocking.” It would have been reasonable to guess that the crippling headaches had something to do with stress: Her relationship with her boyfriend, the baby’s father, had become increasingly contentious and eventually physically violent. Three months into her pregnancy, he became angry at her for wanting to hang out with friends and threw her to the ground outside their apartment. She scrambled to her feet, ran inside, and called the police. He continued to pursue her, so she grabbed a knife. “Back up—I have a baby,” she screamed. After the police arrived, he was arrested and charged with multiple offenses, including battery. He was released on bond pending a trial that would not be held until the next year. Though she had broken up with him several times, Landrum took him back, out of love and also out of fear that she couldn’t support herself, her sons, and the child she was carrying on the paycheck from her waitress gig at a restaurant in the French Quarter.
As her January due date grew closer, Landrum noticed that her hands, her feet, and even her face were swollen, and she had to quit her job because she felt so ill. But her doctor, whom several friends had recommended and who accepted Medicaid, brushed aside her complaints. He recommended Tylenol for the headaches. “I am not a person who likes to take medicine, but I was always popping Tylenol,” Landrum says. “When I told him my head still hurt, he said to take more.”
At a prenatal appointment a few days before her baby shower in November, Landrum reported that the headache had intensified and that she felt achy and tired. A handwritten note from the appointment, sandwiched into a printed file of Landrum’s electronic medical records that she later obtained, shows an elevated blood pressure reading of 143/86. A top number of 140 or more or a bottom number higher than 90, especially combined with headaches, swelling, and fatigue, points to the possibility of preeclampsia: dangerously high blood pressure during pregnancy.
High blood pressure and cardiovascular disease are two of the leading causes of maternal death, according to the Centers for Disease Control and Prevention, and hypertensive disorders in pregnancy, including preeclampsia, have been on the rise over the past two decades, increasing 72 percent from 1993 to 2014. A Department of Health and Human Services report last year found that preeclampsia and eclampsia (seizures that develop after preeclampsia) are 60 percent more common in African American women and also more severe. Landrum’s medical records note that she received printed educational material about preeclampsia during a prenatal visit. But Landrum would comprehend the details about the disorder only months later, doing online research on her own.
When Landrum complained about how she was feeling more forcefully at the appointment, she recalls, her doctor told her to lie down—and calm down. She says that he also warned her that he was planning to go out of town and told her that he could deliver the baby by C-section that day if she wished, six weeks before her early-January due date. Landrum says it seemed like an ultimatum, centered on his schedule and convenience. So she took a deep breath and lay on her back for 40 minutes until her blood pressure dropped within normal range. Aside from the handwritten note, Landrum’s medical records don’t mention the hypertensive episode, the headaches or the swelling, and she says that was the last time the doctor or anyone from his office spoke to her. “It was like he threw me away,” Landrum says angrily.
Four days later, Landrum could no longer deny that something was very wrong. She was suffering from severe back pain and felt bone-tired, unable to get out of bed. That evening, she packed a bag and asked her boyfriend to take her sons to her stepfather’s house and then drive her to the hospital. In the car on the way to drop off the boys, she felt wetness between her legs and assumed her water had broken. But when she looked at the seat, she saw blood. At her stepfather’s house, she called 911. Before she got into the ambulance, Landrum pulled her sons close. “Mommy loves you,” she told them, willing them to stay calm. “I have to go away, but when I come back I will have your sister.”
By the time she was lying on a gurney in the emergency room of Touro Infirmary, a hospital in the Uptown section of New Orleans, the splash of blood had turned into a steady stream. “I could feel it draining out of me, like if you get a jug of milk and pour it onto the floor,” she recalls. Elevated blood pressure—Landrum’s medical records show a reading of 160/100 that day—had caused an abruption: the separation of the placenta from her uterine wall.
With doctors and nurses hovering over her, everything became both hazy and chaotic. When a nurse moved a monitor across her belly, Landrum couldn’t hear a heartbeat. “I kept saying: ‘Is she OK? Is she all right?’ ” Landrum recalls. “Nobody said a word. I have never heard a room so silent in my life.” She remembers that the emergency room doctor dropped his head. Then he looked into her eyes. “He told me my baby was dead inside of me. I was like: What just happened? Is this a dream? And then I turned my head to the side and threw up.”
Sedated but conscious, Landrum felt her mind growing foggy. “I was just so tired,” she says. “I felt like giving up.” Then she pictured the faces of her two young sons. “I thought, Who’s going to take care of them if I’m gone?” That’s the last thing she recalls clearly. When she became more alert sometime later, a nurse told her that she had almost bled to death and had required a half dozen units of transfused blood and platelets to survive. “The nurse told me: ‘You know, you been sick. You are very lucky to be alive,’ ” Landrum remembers. “She said it more than once.”
A few hours later, a nurse brought Harmony, who had been delivered stillborn via C-section, to her. Wrapped in a hospital blanket, her hair thick and black, the baby looked peaceful, as if she were dozing. “She was so beautiful—she reminded me of a doll,” Landrum says. “I know I was still sedated, but as I held her, I kept looking at her, thinking, Why doesn’t she wake up? I tried to feel love, but after a while I got more and more angry. I thought, Why is God doing this to me?”
The hardest part was going to pick up her sons empty-handed and telling them that their sister had died. “I felt like I failed them,” Landrum says, choking up. “I felt like someone had taken something from me, but also from them.”
In 1850, when the death of a baby was simply a fact of life, and babies died so often that parents avoided naming their children before their first birthdays, the United States began keeping records of infant mortality by race. That year, the reported black infant-mortality rate was 340 per 1,000; the white rate was 217 per 1,000. This black/white divide in infant mortality has been a source of both concern and debate for over a century. In his 1899 book, The Philadelphia Negro, the first sociological case study of black Americans, W. E. B. Du Bois pointed to the tragedy of black infant death and persistent racial disparities. He also shared his own “sorrow song,” the death of his baby son, Burghardt, in his 1903 masterwork, The Souls of Black Folk.
From 1915 through the 1990s, amid vast improvements in hygiene, nutrition, living conditions, and healthcare, the number of babies of all races who died in the first year of life dropped by over 90 percent—a decrease unparalleled by reductions in other causes of death. But that national decline in infant mortality has since slowed. In 1960 the United States was ranked 12th among developed countries in infant mortality. Since then, with its rate largely driven by the deaths of black babies, the United States has fallen behind and now ranks 32nd out of the 35 wealthiest nations. Low birth weight is a key factor in infant death, and a new report released in March by the Robert Wood Johnson Foundation and the University of Wisconsin suggests that the number of low-birth-weight babies born in the United States—also driven by the data for black babies—has inched up for the first time in a decade.
Black infants in America are now more than twice as likely to die as white infants—11.3 per 1,000 black babies, compared with 4.9 per 1,000 white babies, according to the most recent government data—a racial disparity that is actually wider than in 1850, 15 years before the end of slavery, when most black women were considered chattel. In one year, that racial gap adds up to more than 4,000 lost black babies. Education and income offer little protection. In fact, a black woman with an advanced degree is more likely to lose her baby than a white woman with less than an eighth-grade education.
This tragedy of black infant mortality is intimately intertwined with another tragedy: a crisis of death and near-death in black mothers themselves. The United States is one of only 13 countries in the world where the rate of maternal mortality—the death of a woman related to pregnancy or childbirth up to a year after the end of pregnancy—is now worse than it was 25 years ago. Each year, an estimated 700 to 900 maternal deaths occur in the United States. In addition, the CDC reports more than 50,000 potentially preventable near-deaths, like Landrum’s, per year—a number that rose nearly 200 percent from 1993 to 2014, the last year for which statistics are available. Black women are three to four times as likely to die from pregnancy-related causes as their white counterparts, according to the CDC—a disproportionate rate that is higher than that of Mexico, where nearly half the population lives in poverty—and as with infants, the high numbers for black women drive the national numbers.
Monica Simpson is the executive director of SisterSong, the country’s largest organization dedicated to reproductive justice for women of color, and a member of the Black Mamas Matter Alliance, an advocacy group. In 2014 she testified in Geneva before the United Nations Committee on the Elimination of Racial Discrimination, saying that the United States, by failing to address the crisis in black maternal mortality, was violating an international human rights treaty. After her testimony, the committee called on the United States to “eliminate racial disparities in the field of sexual and reproductive health and standardize the data-collection system on maternal and infant deaths in all states to effectively identify and address the causes of disparities in maternal- and infant-mortality rates.” No such measures have been forthcoming. Only about half the states and a few cities maintain maternal-mortality review boards to analyze individual cases of pregnancy-related deaths. There has not been an official federal count of deaths related to pregnancy in more than 10 years. An effort to standardize the national count has been financed in part by contributions from Merck for Mothers, a program of the pharmaceutical company, to the CDC Foundation.
The crisis of maternal death and near-death also persists for black women across class lines. This year, the tennis star Serena Williams shared in Vogue the story of the birth of her first child and in further detail in a Facebook post. The day after delivering her daughter, Alexis Olympia, via C-section in September, Williams experienced a pulmonary embolism, the sudden blockage of an artery in the lung by a blood clot. Though she had a history of this disorder and was gasping for breath, she says medical personnel initially ignored her concerns. Though Williams should have been able to count on the most attentive healthcare in the world, her medical team seems to have been unprepared to monitor her for complications after her cesarean, including blood clots, one of the most common side effects of C-sections. Even after she received treatment, her problems continued; coughing, triggered by the embolism, caused her C-section wound to rupture. When she returned to surgery, physicians discovered a large hematoma, or collection of blood, in her abdomen, which required more surgery. Williams, 36, spent the first six weeks of her baby’s life bedridden.
The reasons for the black/white divide in both infant and maternal mortality have been debated by researchers and doctors for more than two decades. But recently there has been growing acceptance of what has largely been, for the medical establishment, a shocking idea: For black women in America, an inescapable atmosphere of societal and systemic racism can create a kind of toxic physiological stress, resulting in conditions—including hypertension and preeclampsia—that lead directly to higher rates of infant and maternal death. And that societal racism is further expressed in a pervasive, long-standing racial bias in healthcare—including the dismissal of legitimate concerns and symptoms—that can help explain poor birth outcomes even in the case of black women with the most advantages.
“Actual institutional and structural racism has a big bearing on our patients’ lives, and it’s our responsibility to talk about that more than just saying that it’s a problem,” says Dr. Sanithia L. Williams, an African American OB-GYN in the Bay Area and a fellow with the nonprofit organization Physicians for Reproductive Health. “That has been the missing piece, I think, for a long time in medicine.”
After Harmony’s death, Landrum’s life grew more chaotic. Her boyfriend blamed her for what happened to their baby and grew more abusive. Around Christmas 2016, in a rage, he attacked her, choking her so hard that she urinated on herself. “He said to me, ‘Do you want to die in front of your kids?’ ” Landrum said, her hands shaking with the memory.
Then he tore off her clothes and sexually assaulted her. She called the police, who arrested him and charged him with second-degree rape. Landrum got a restraining order, but the district attorney eventually declined to prosecute. She also sought the assistance of the New Orleans Family Justice Center, an organization that provides advocacy and support for survivors of domestic violence and sexual assault. Counselors secreted her and her sons to a safe house, before moving them to a more permanent home early last year.
Landrum had a brief relationship with another man and found out in March 2017 that she was pregnant again and due in December. “I’m not going to lie; though I had a lot going on, I wanted to give my boys back the sister they had lost,” Landrum said, looking down at her lap. “They don’t forget. Every night they always say their prayers, like: ‘Goodnight, Harmony. Goodnight, God. We love you, Sister.’ ” She paused and took a breath. “But I was also afraid, because of what happened to me before.”
Early last fall, Landrum’s case manager at the Family Justice Center, Mary Ann Bartkowicz, attended a workshop conducted by Latona Giwa, the 31-year-old cofounder of the Birthmark Doula Collective. The group’s 12 racially diverse birth doulas, ages 26 to 46, work as professional companions during pregnancy and childbirth and for six weeks after the baby is born, serving about 400 clients across New Orleans each year, from wealthy women who live in the upscale Garden District to women from the Katrina-ravaged Lower Ninth Ward and other communities of color who are referred through clinics, school counselors, and social-service organizations. Birthmark offers pro bono services to these women in need.
Right away, the case manager thought of her young, pregnant client. Losing her baby, nearly bleeding to death, and fleeing an abusive partner were only the latest in a cascade of harrowing life events that Landrum had lived through since childhood. She was 10 when Hurricane Katrina devastated New Orleans in 2005. She and her family first fled to a hotel and then walked more than a mile through the rising water to the Superdome, where thousands of evacuees were already packed in with little food, water, or space. She remembers passing Charity Hospital, where she was born. “The water was getting deeper and deeper, and by the end, I was on my tippy-toes, and the water was starting to go right by my mouth,” Landrum recalls. “When I saw the hospital, honestly I thought, I’m going to die where I was born.” Landrum wasn’t sure what doulas were, but once Bartkowicz explained their role as a source of support and information, she requested the service. Latona Giwa would be her doula.
Giwa, the daughter of a white mother and a Nigerian immigrant father, took her first doula training while she was still a student at Grinnell College in Iowa. She moved to New Orleans for a fellowship in community organizing before getting a degree in nursing. After working as a labor and delivery nurse and then as a visiting nurse for Medicaid clients in St. Bernard Parish, an area of southeast New Orleans where every structure was damaged by Katrina floodwaters, she devoted herself to doula work and childbirth education. She founded Birthmark in 2011 with Dana Keren, another doula who was motivated to provide services for women in New Orleans who most needed support during pregnancy but couldn’t afford it.
“Being a labor and delivery nurse in the United States means seeing patients come in acute medical need, because we haven’t been practicing preventive and supportive care all along,” Giwa says. Louisiana ranks 44th out of all 50 states in maternal mortality; black mothers in the state die at 3.5 times the rate of white mothers. Among the 1,500 clients the Birthmark doulas have served since the collective’s founding seven years ago, 10 infant deaths have occurred, including late-term miscarriage and stillbirth, which is lower than the overall rate for both Louisiana and the United States, as well as the rates for black infants. No mothers have died.
A scientific examination of 26 studies of nearly 16,000 subjects first conducted in 2003 and updated last year by Cochrane, a nonprofit network of independent researchers, found that pregnant women who received the continuous support that doulas provide were 39 percent less likely to have C-sections. In general, women with continuous support tended to have babies who were healthier at birth. Though empirical research has not yet linked doula support with decreased maternal and infant mortality, there are promising anecdotal reports. Last year, the American College of Obstetricians and Gynecologists released a statement noting that “evidence suggests that, in addition to regular nursing care, continuous one-to-one emotional support provided by support personnel, such as a doula, is associated with improved outcomes for women in labor.”
In early November, the air was thick with humidity as Giwa pulled up to Landrum’s house, half of a wood-frame duplex, for their second meeting. Landrum opened the door, happy to see the smiling, fresh-faced Giwa, who at first glance looked younger than her 23-year-old client. Giwa would continue to meet with Landrum weekly until her December 22 due date, would be with her during labor and delivery, and would make six postpartum home visits to assure that both mother and baby son remained healthy. Landrum led Giwa through her living room, which was empty except for a tangle of disconnected cable cords. She had left most of her belongings behind—including her dog and the children’s new Christmas toys—when she fled from her abusive boyfriend, and she still couldn’t afford to replace all her furniture.
They sat at the kitchen table, where Giwa asked about Landrum’s last doctor visit, prodding her for details. Landrum reassured her that her blood pressure and weight, as well as the baby’s size and position, were all on target.
“Have you been getting rid of things that are stressful?” Giwa asked, handing her a tin of lavender balm, homemade from herbs in her garden.
“I’m trying not to be worried, but sometimes. . . .” Landrum said haltingly, looking down at the table as her hair, tipped orange at the ends, brushed her shoulders. “I feel like my heart is so anxious.”
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