Storygram: Annie Waldman’s “How Hospitals Are Failing Black Mothers”
The Storygram series, in which professional writers annotate award-winning stories to illuminate what makes a great science story great, is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported by a grant from the Gordon and Betty Moore Foundation.
Annie Waldman is a reporter at ProPublica covering education. This annotation was done by Tasneem Raja and is co-published at The Open Notebook.
NEW YORK — When Dacheca Fleurimond decided to give birth at SUNY Downstate Medical Center earlier this year, her sister tried to talk her out of it.
Her sister had recently delivered at a better-rated hospital in Brooklyn’s gentrified Park Slope neighborhood and urged Fleurimond, a 33-year-old home health aide, to do the same.
But Fleurimond had given birth to all five of her other children at the state-run SUNY Downstate and never had a bad experience. She and her family had lived steps away from the hospital in East Flatbush when they emigrated from Haiti years ago. She knew the nurses at SUNY Downstate, she told her sister. She felt comfortable there.
NATIONAL ACADEMIES KECK FUTURES INITIATIVE COMMUNICATION AWARD |
The Keck awards promote effective communication in science, engineering, medicine and any interdisciplinary work within and beyond the scientific community. This story was part of ProPublica and NPR’s Lost Mothers series, which won this award in 2018. |
She didn’t know then how much rode on her decision, or how fraught with risk her delivery would turn out to be.
It’s been long-established that black women like Fleurimond fare worse in pregnancy and childbirth, dying at a rate more than triple that of white mothers. And while part of the disparity can be attributed to factors like poverty and inadequate access to health care, there is growing evidence that points to the quality of care at hospitals where a disproportionate number of black women deliver, which are often in neighborhoods disadvantaged by segregation.
Researchers have found that women who deliver at these so-called “black-serving” hospitals are more likely to have serious complications — from infections to birth-related embolisms to emergency hysterectomies — than mothers who deliver at institutions that serve fewer black women.
Still, it’s difficult to tell from studies alone how this pattern plays out in real life. The hospitals are never named. The women behind the numbers are faceless, the specific ways their hospitals may have failed them unknown.
ProPublica did its own analysis, using two years of hospital inpatient discharge data from New York, Illinois and Florida to look in-depth at how well different facilities treat women who experience one particular problem — hemorrhages — while giving birth.
We, too, found the same broad pattern identified in previous studies — that women who hemorrhage at disproportionately black-serving hospitals are far more likely to wind up with severe complications, from hysterectomies, which are more directly related to hemorrhage, to pulmonary embolisms, which can be indirectly related. When we looked at data for only the most healthy women, and for white women at black-serving hospitals, the pattern persisted.
Beyond this bird’s-eye view, our analysis allowed us to identify individual hospitals with higher complication rates, to look at what kinds of protocols they have and to examine what went wrong in specific cases.
We found, for example, that SUNY Downstate, where 90 percent of the women who give birth are black, has one of the highest complication rates for hemorrhage across all three states. On average, 34 percent of women who hemorrhage while giving birth at New York hospitals experience significant complications. At SUNY Downstate, it’s 62 percent.
SUNY Downstate officials defended the hospital’s handling of obstetric hemorrhages, saying it has extensive protocols for responding to them and gets exemplary results despite handling deliveries involving mothers with higher-than-average numbers of health problems like diabetes, obesity and high blood pressure. They would not comment on Fleurimond’s case, citing patient privacy.
Fleurimond was admitted to Downstate on Aug. 9.
Pregnant with twins, her doctor noticed she was in preterm labor at her 34-week checkup and prepped her for an unplanned cesarean section. When they cut into her womb to deliver the babies, Fleurimond’s uterus didn’t fully contract as it should have. She began to bleed. By the time the doctors controlled the hemorrhage, she had lost more than a liter of blood, requiring two transfusions.
At first, it seemed she’d be fine. She awoke the following morning thinking the worst was over, eager to see her new sons.
She wouldn’t survive the day.
Every year in the United States, between 700 and 900 women die from causes related to pregnancy and childbirth. For every woman that dies, dozens more experience severe complications, which affect more than 50,000 women annually.
The U.S. rate of maternal mortality is substantially higher than those of other affluent nations and has risen over the past decade. Outcomes for black women have led the way, intensifying efforts by medical experts and academics to understand what’s driving the racial disparity.
A complicating factor in understanding how hospital care figures in is that hospitals take on different proportions of tough cases — patients who have less access to consistent, quality prenatal care or have chronic health issues, like diabetes or heart disease, that make pregnancy and childbirth riskier.
Some prominent researchers are using a methodology for analyzing birth outcomes that attempts to even the playing field.
The California Maternal Quality Care Collaborative, which studies maternal deaths and develops techniques to prevent them, looks at how well hospitals respond to obstetric hemorrhage, typically defined as losing more than 500 milliliters of blood during a vaginal birth or a liter of blood during a cesarean section. Why hemorrhages? Because women of all races experience them at roughly the same rates and their likelihood is less affected by factors like race or economic status, said CMQCC medical director Dr. Elliott Main.
CMQCC evaluates hospitals by calculating what percent of women who hemorrhage during birth wind up with major complications. Researchers count both the complications more directly related to hemorrhages, like hysterectomies and blood transfusions, and those that could be indirectly related, including embolisms, blood clots, heart attacks, kidney failure, respiratory distress, aneurysms, brain bleeds, sepsis and shock. Ultimately, this approach measures how often doctors prevent complications when a hemorrhage occurs, and when looked at over time, can show if a hospital has been able to improve.
ProPublica used the metric to analyze inpatient hospital discharge data collected by New York, Illinois and Florida for 2014 and 2015, examining all obstetric cases that were coded as involving hemorrhages — about 67,000 cases in all.
We also put each hospital into a category based on the concentration of black mothers who gave birth there, defining facilities as low, medium or high black-serving. We crafted our analysis so that it reflected the racial distribution of mothers delivering in each state. In New York, if black mothers represented roughly a third or more of the deliveries at a hospital, we considered the hospital high black-serving. In Florida, we considered a hospital high black-serving if about 40 percent of the mothers were black. In Illinois, we considered a hospital high black-serving if at least half of its mothers were black.
In New York, we defined a hospital as low black-serving if less than eight percent of the women delivering there were black. In Illinois, the cutoff was 14 percent. In Florida, it was 18 percent.
Across the three states, about one in 10 hospitals in our analysis was high black-serving — in some cases, extremely high. Ninety-nine percent of the mothers who gave birth at Jackson Park Hospital and Medical Center in Chicago were black.
While a handful of low black-serving hospitals had high complication rates, our analysis found that, on average, outcomes at hospitals that served a high number of black patients were far worse.
In New York, on average, high black-serving hospitals had complication rates 21 percent higher than low black-serving hospitals. In Illinois and Florida, high black-serving hospitals had complication rates 11 percent higher.
When we limited our patient pool to only mothers of average birthing age — between 25 and 32 — who did not have any chronic conditions like heart disease or diabetes, the pattern remained largely the same. This bolstered the notion that differences in care, along with patient characteristics, affected outcomes.
Deeper analysis of the data for each state underlined this finding. At low black-serving hospitals in New York, just under a third of the women who hemorrhaged had complications. At high black-serving hospitals, that rate climbed to about half.
Dr. Elizabeth Howell, a professor of obstetrics and gynecology at the Icahn School of Medicine at Mount Sinai Hospital, has taken a more refined look at racial disparities among New York City’s hospitals. She found black mothers were twice as likely to suffer harm when delivering babies than white mothers, even after adjusting for patients’ differing characteristics, suggesting that some of the racial disparity may be due to hospital quality. In a separate study, she estimated that the rate of harm for black women would fall by nearly 50 percent if they gave birth at the same hospitals as white women.
She’s also considered the same dynamic nationally. Because three quarters of black mothers deliver in about a quarter of the country’s hospitals, Howell believes that racial disparities could be reduced if hospitals that disproportionately serve black women improved their care.
There is clear evidence hospitals can make such improvements.
In California, complications related to obstetric hemorrhage decreased by about 20 percent in hospitals that adopted protocols promoted by Main’s group, which include keeping carts stocked with supplies to stave off massive bleeding and holding drills to simulate severe hemorrhage events. “It creates improvement in the team, increases communication and improves your response to all emergencies,” Main said.
Still, Main’s protocols haven’t been universally adopted in California, let alone elsewhere in the U.S., and many hospitals go their own way.
The spokesperson for SUNY Downstate — where more than 14 percent of women hemorrhage during birth, an average of one mother every other day — said the hospital “has already developed their own ‘best practice’ protocols for hemorrhage that other hospitals should be following.” These include a special “Code Mom” that details steps doctors and nurses need to take when responding to a hemorrhage. And women with placental problems are monitored by ultrasound, so that doctors can anticipate the most complex cases before beginning cesarean surgeries.
According to public documents posted in an online repository of the hospital’s policies, the obstetric and gynecology department’s emergency response policy on hemorrhage does not explicitly follow some of Main’s recommendations, such as having pre-fab kits to respond to hemorrhages and doing staff drills to prepare for them. SUNY Downstate did not respond to questions about these differences.
Dr. Ovadia Abulafia, the chair of the hospital’s department of obstetrics and gynecology, noted that SUNY Downstate serves a particularly “underserved” and “high-risk” population. More than 80 percent of women who deliver there are obese, a spokesperson said, and the hospital sees a higher incidence of diabetes, blood pressure disorders and placental separation problems compared to the rest of the nation.
But Dr. Allison Bryant Mantha, a high-risk obstetrician and health care disparities researcher at Massachusetts General Hospital, said hospitals shouldn’t use demographics or patient characteristics to excuse poor outcomes. Instead, they should hone their practices to deliver the care their patients need.
“Hospitals have to own the conditions that women walk in with,” Bryant said. “You have to give patients what they need to get to a quality level of care. We are doing a good job of equal care, but not adjusting for needs.”
Fleurimond awoke in good spirits in the labor and delivery unit on Aug. 10, the day after her delivery. Her biggest concern that afternoon was what she was going to eat. “What is Jell-O going to do for me?” she complained to her sister Merline Lamy, who responded, “This is your two-day diet, baby girl.” Fleurimond rolled her eyes.
She might not have felt it at the moment, but Fleurimond was still at risk of serious complications related to her hemorrhage, including pulmonary embolism, typically caused when a blood clot travels from a patient’s leg to a lung artery, blocking blood flow to the lungs.
Her blood was already predisposed to clotting, a biological mechanism that likely evolved in pregnant women to prevent hemorrhage during birth. Carrying twins can put extra pressure on the vessels around the uterus, further constricting blood flow. The cesarean surgery, like all surgeries, substantially increased her risk, as did the transfusions.
On top of that, Fleurimond weighed 260 pounds and was being treated for high blood pressure.
To prevent clotting, nurses had put compression boots on her legs. Just after 3 p.m., according to family members who were visiting Fleurimond, a nurse unfastened the boots, helped Fleurimond into a wheelchair and took her to visit the twins, Jayden and Kayden, in the neonatal intensive care unit. She’d held them only briefly in the operating room and craved another look. They had her round cheeks, which shone like polished apples.
Experts say compression boots lose their deterrent effect about 15 minutes after they are removed. Fleurimond spent about 90 minutes in the NICU with her aunt, who recalled her sitting in her wheelchair the whole time, her legs hanging down. Shortly after her aunt left, she complained that she felt unwell, but three hospital employees who spoke to ProPublica on the condition of anonymity say that she waited at least 40 minutes for a transport aide to wheel her back to her room. There is no evidence in her medical record that anyone came to assess her when she returned.
Doctors also did not prescribe heparin, a blood-thinning medicine being used at other hospitals to prevent pulmonary embolism in mothers with high risk factors, for whom compression boots are unlikely to be enough.
In the United Kingdom, protocols that advocate more aggressive use of blood thinners, particularly after C-sections, helped reduce embolism deaths by more than half within three years.
In the United States, a chorus of medical trade groups and maternal safety organizations have begun to promote more widespread use of blood thinners during pregnancy and childbirth, but not all hospitals have made it their practice.
“There are some experts who feel that it’s not worth the time, trouble and cost to avoid relatively rare events,” said Dr. Alexander Friedman, an assistant professor of obstetrics and gynecology at Columbia University Medical Center.
Friedman’s hospital on the edge of Harlem typically administers the drug to high-risk mothers, but Fleurimond wouldn’t have had to travel that far. Three miles away from Downstate, at a Brooklyn hospital that has a smaller concentration of black patients and a lower complication rate related to hemorrhages, Maimonides Medical Center gives blood thinners to nearly all of mothers who undergo cesarean sections or have other risk factors.
Friedman, who reviewed Fleurimond’s medical records at ProPublica’s request, said she should’ve received the drug.
Dr. Douglas Montgomery, an obstetrician-gynecologist and director of the Maternal Fetal Medicine Department at California’s Kaiser Permanente Riverside Medical Center, said he would prescribe the drug to any patient who had Fleurimond’s risk factors.
At around 6 p.m., Fleurimond called the father of her twins. She sounded short of breath. She said she was in pain and asked him to come to the hospital, then hung up and waited, alone.
At about 6:25 p.m., Fleurimond screamed, medical records show. A doctor and nurse entered her room and found her gasping for air. More responders came. They couldn’t find a pulse. After more than an hour of resuscitation attempts, she was pronounced dead at 7:45 p.m.
Because Fleurimond died “during diagnostic or therapeutic procedures or from complications of such procedures,” as Downstate’s website puts it, she was referred to the New York City medical examiner’s office for an autopsy. Her cause of death, according to the autopsy report: pulmonary embolism, also known as “venous thromboembolism,” a condition that almost always has a chance of being prevented.
In an emailed statement, Abulafia said SUNY Downstate “follows the proven [American College of Obstetricians and Gynecologists] protocols for obstetric hemorrhage, severe hypertension and venous thromboembolism.” SUNY Downstate has not had a maternal death related to hemorrhage in the past 15 years, a spokesperson said.
Such assurances provide little solace to Fleurimond’s relatives, who have sought an attorney to represent them.
“Dacheca Fleurimond was clearly at high risk to have a blood clot and there weren’t adequate preventative measures,” said the attorney, Eleni Coffinas. “The obesity, the hypertension, and the fact that she hemorrhaged after her C-section were all high-risk factors and she needed to be monitored for that.”
New York City occupies a unique place in the discussion of racial disparities in maternal mortality as both a hub of groundbreaking research on the subject and one of the nation’s starkest examples of such gaps.
In addition to the work by Howell, the New York City Department of Health and Mental Hygiene has published a couple of reports, including one documenting how, as the mortality rate of expectant and new mothers overall across the city has dropped, the disparity between black and white mothers has grown.
Even when accounting for risk factors like low educational attainment, obesity and neighborhood poverty level, the city’s black mothers still face significantly higher rates of harm, the agency found. Of note, black mothers who are college-educated fare worse than women of all other races who never finished high school. Obese women of all races do better than black women who are of normal weight. And black women in the wealthiest neighborhoods do worse than white, Hispanic and Asian mothers in the poorest ones.
The health department has even mapped where the most maternal harm occurs, dividing the city into community districts. The highest rates of complications are concentrated in a swath of land in Central Brooklyn, in an area largely untouched by the wave of gentrification that has swept other parts of the borough. Here, mothers face up to four times the complication rates of neighborhoods just a few subway stops away. Fleurimond lived in one such danger zone, in a public housing development in eastern Crown Heights.
At three medical centers in this area that deliver babies — Brookdale University Hospital Medical Center, Kings County Hospital and SUNY Downstate — more than half of mothers who hemorrhaged during delivery experienced complications, ProPublica’s data analysis shows. More than three quarters of the women who give birth at Brookdale are black, as are nearly 90 percent of the women who deliver at Kings County Hospital.
Officials at Brookdale, a private nonprofit hospital, would not respond to questions from ProPublica. The New York City Health + Hospitals Corporation, the public benefit organization that operates Kings County Hospital, gave a detailed response laying out its protocols for obstetric hemorrhages, including some recommended by Main’s group. Robert de Luna, a spokesperson for the city’s hospital operator, said in an email that while hemorrhage is a good proxy indicator for maternal harm, “some of our patients come from all over the world (self-referred), a good number coming to us too late to benefit from our prenatal care services.” (Read the full response here.)
Some of the women who deliver at these hospitals are well aware of their reputations.
Brookdale, for example, was recently rated an ‘F’ by Leapfrog, the health care quality and safety nonprofit, one of only 15 hospitals in the country to receive a failing grade.
But proximity sometimes takes precedence over choice. That was the case for Merowe Nubyahn, a 37-year-old hospice aide.
In March 2013, when Nubyahn was 24 weeks pregnant, she was overcome with intense nausea and vomiting, and unexpectedly, her water broke. When emergency medical technicians arrived at her East New York apartment, she begged them to take her anywhere but Brookdale. She hadn’t liked what she had heard about the hospital and had been getting her prenatal care elsewhere. The ambulance took her to Brookdale anyway because it was closest.
At the hospital, she was rushed in for a cesarean section. Her daughter, delivered at what’s considered the edge of viability, barely clung to life in the hospital’s NICU. When Nubyahn awoke in the recovery room, layers of gauze covered her belly and her throat felt like sandpaper. Disoriented, she said she asked a nurse what had happened, but the words felt garbled leaving her mouth. Two of her teeth had been knocked out when she was intubated for anesthesia, according to her medical records. Nubyahn recalled that when she asked the doctor about them, he gave her an incredulous look and asked, “Are you sure you had teeth when you came in here?”
A bigger threat to her health emerged the morning after she was discharged from the hospital. As she sat in bed, she says she felt sharp cramping pains and a warm, viscous feeling. She looked down at her belly and saw dark, clotted blood — “plums and prunes” — bursting out of her cesarean incision.
Her wound had become infected — a common complication — and had begun to come apart. Still wearing her hospital bracelet, she was shuttled back to Brookdale and told she’d also developed a hematoma, a mass of blood, around her incision site.
While Nubyahn was being treated in one part of the hospital for her various complications, her baby died in another. Overcome with grief and stung by her treatment, Nubyahn checked herself out and vowed to never return. “All the horror stories that I have heard about Brookdale … I totally have my own now,” she said.
Khari Edwards, the vice president of external affairs at Brookdale, said the hospital would not comment on Nubyahn’s case due to privacy laws.
Recognizing that hospitals in Central Brooklyn have some of the highest maternal complication rates in the city, the health department has begun to target the area with services in recent years. It supports the By My Side initiative that pairs up women with doulas who can advocate for them during birth. The department also supports prenatal programs in the area based on a model of assessment, education and support, also known as CenteringPregnancy.
“We are data driven and we look to where the outcomes are the worst,” said Dr. Deborah Kaplan, the assistant commissioner for maternal, infant and reproductive health at the department.
This month, the city convened a new committee to review deaths and severe complications related to pregnancy and childbirth. One of its priorities will be to figure out why — despite years of research and attention — the city’s racial disparities have persisted and even grown.
“We used to say we are not sure why we are seeing these racial disparities. Now we say unequivocally that racism causes these problems,” said Kaplan. She emphasized that this encompassed not only health care but all aspects of life in the city, from housing to schools. “If we provide equally to everyone, we could widen the inequity. We have to prioritize putting resources in neighborhoods with the highest rates of severe maternal morbidity and the least access.”
Just three months after Fleurimond died at SUNY Downstate, another black woman died there, hours after giving birth.
Tanesia Walker, a 31-year-old flight attendant, had originally planned to deliver at New York-Presbyterian Brooklyn Methodist Hospital in Park Slope, where she had her first son. But a week before her scheduled cesarean, her doctor changed her delivery to Downstate, where he also had privileges.
Walker grew nervous after reading negative reviews of the hospital online, family members said. They tried to calm her down. Hers was not a high-risk pregnancy, they reminded her. She wasn’t overweight and her blood pressure was fine.
Walker seemed okay after a C-section at SUNY Downstate on Nov. 27, holding her newborn son Tyre close to her chest as her family spent the afternoon with her. Then, at 2 a.m., she sent a text message to her fiancé saying she had a pain in her side, he told ProPublica.
A few hours later, she was dead.
As family members trickled into the hospital that morning, shocked and confused, doctors couldn’t say why she died, said her father Junior Walker. They mentioned the possibility of blood clots in her lungs, he added.
The family has requested her medical records from the hospital. As with Fleurimond, the city medical examiner’s office has done an autopsy, but has not yet released its report.
Walker’s death haunts her younger brother Dwayne, who kept in touch with her nonstop as she traveled. He can’t stop thinking, why her? She was educated, had a criminal justice degree from John Jay College. She was healthy, didn’t drink or smoke, ran track in high school. She was financially stable, quit a management job at Chase Bank to see the world aboard American Airlines.
“I just want to know why she died,” he said, eyes wet with tears. He keeps sending her text messages, even now that she is gone. “She was a healthy woman who shouldn’t have died from a cesarean section.”
Fleurimond’s family is doing its best to survive without her.
Her sister, Merline Lamy, took in Fleurimond’s six youngest children, blending them into her own household, but that meant squeezing 12 people into a three-bedroom apartment. The landlord threatened to evict them.
Fleurimond’s brother and his wife have tried to collect money for the children on GoFundMe, but so far have only raised about $250. (ProPublica reporter Nina Martin, who was not involved in the reporting or preparation of this story, donated $100 three months ago.)
Fleurimond’s 58-year-old mother has become the principal surrogate parent — changing diapers, cooking dinners and breaking up sibling spats. She sleeps no more than a couple of hours each night, her eyes permanently rimmed with dark shadows.
The kids, too, are struggling to settle into their new life.
On a recent evening, Joshua, 9, tried to tune out the noise in Lamy’s packed apartment and concentrate on his math homework. Berlynda, 10, comforted a twin in each arm. Aiden, 2, climbed on the couch with a runny nose.
Like all toddlers, his mood teeters between buoyancy and despair. But when he calls for “mama,” his siblings have to remind him she will not come.
ProPublica Illinois reporters Duaa Eldeib and Jerrel Floyd contributed to this report.
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Tasneem Raja is the executive editor of The Tyler Loop, a digital magazine that explores policy, history, and demographics in Tyler, Texas. She is an award-winning journalist who has reported for NPR, The New Yorker, The Atlantic, Mother Jones, and other national outlets. A former senior editor at NPR, she launched a popular podcast exploring issues of identity and race with NPR’s Code Switch team. At Mother Jones, she specialized in data journalism and led a team that built the first-ever database of mass shootings in America. She’s a pioneer in the field of data-driven digital storytelling, a frequent speaker on issues of digital journalism, and a die-hard fan of alt weeklies, where she got her start as a local reporter. She lives in Tyler with her husband, her stepson, and two imperious terriers. Follow her on Twitter @tasneemraja.
You may view this story in its original format at ProPublica. Tasneem Raja’s Q&A with writer Annie Waldman is at The Open Notebook.