In July 2019, Erica Chidi called a friend, Stanford obstetrician Erica Cahill, MD, to ask for her help with an important project.
Chidi, a sexual and reproductive health educator, aimed to help other Black women who feared for their health in childbirth. Today, the United States is the riskiest wealthy nation in which to give birth, with Black women facing especially heightened risks of death and devastating complications.
The overall U.S. rate of maternal deaths is more than triple what’s seen in other wealthy countries and three times higher among Black than white women. Severe birth complications are rising, affecting more than 1 in every 100 births, with race playing a big role in who is most vulnerable.
“I was pretty frustrated because all I was seeing around the issue was statistical, situational reporting. There weren’t any interventions being coupled with the reporting,” said Los Angeles-based Chidi, who is the CEO of an online women’s health education startup, LOOM, and a former doula, or support person for women in labor.
The New York Times had recently given her the go-ahead to write a guide for how pregnant Black women could work with their doctors to lower their risk of complications.
“Erica and I talked,” said Cahill, clinical assistant professor of obstetrics and gynecology at the Stanford School of Medicine, and Chidi told her, “I have friends and colleagues coming up to me, saying, ‘We see all this very terrifying data; what do we do about it?’ I have nothing to give them.”
“Infants at risk,” a related story, describes Stanford Medicine initiatives to address how racial inequities in care that follow the most vulnerable babies for years.
Chidi and Cahill aimed to merge their perspectives in The New York Times guide. They knew the project would be a difficult needle to thread: Women shouldn’t have to ask their doctors to protect them from racism — but many want the tools to try.
“We have to start somewhere,” said Chidi. “We’re in a position right now where we wonder, do we have the conversation and increase the burden on pregnant women, or do we have the conversation and potentially save a life?”
Meanwhile, the U.S. medical profession is waking up to the profound racial inequities around giving birth, with Stanford Medicine researchers and clinicians leading efforts to identify factors at work, translate scientific findings into safer medical practice, and foster dialog between health care providers and the women at risk.
Danger giving birth
The United States trails every other rich country in keeping birthing women safe, and race is a key factor: Black and Native American women are about three times more likely than all other groups of women in the country to die from childbirth, facing risks similar to those of birthing women in many developing countries.
But the risks don’t end there. All nonwhite mothers — including Asian women and Latinas — are also more likely to experience life-threatening complications of birth.
Though not fatal, complicated deliveries cause short- and long-term physical harms — from hemorrhage and seizures to heart problems, kidney failure and emergency hysterectomies — as well as emotional trauma, and lasting effects on women’s health and finances.
“Birth equity is where a whole life starts,” said Stanford neonatologist Jochen Profit, MD, associate professor of pediatrics, noting that babies born to nonwhite women are more likely to be born so dangerously early that they need intensive care.
“Birth is a particularly vulnerable time for families and for babies. Any suboptimal care we deliver can have lifelong ramifications.”
Today, several Stanford experts are working hand in hand with maternity care leaders, California health agencies and 40 other organizations to end maternal deaths, reduce severe health complications, and take on racial health disparities that hamper those efforts. At the same time, Profit and other neonatologists are tackling racial inequities for babies hospitalized in neonatal intensive care units [Read related story here].
The collaborations to improve maternal health began in earnest in 2006, when the state provided seed funding for the California Maternal Quality Care Collaborative at Stanford’s School of Medicine. Their work centers on sharing maternal health data, and on disseminating information about best practices and resources for improving maternal care.
More than 200 hospitals are members of the collaborative, which has made California a leader in the United States in reversing maternal mortality trends. Since the collaborative’s launch, California’s maternal mortality rate has dropped to an average of 7 deaths per 100,000 live births, half of its peak in 2006. Other states are following in California’s footsteps.
Still, challenges persist across the board. In 2018, for example, 658 women in the United States died during or shortly after childbirth. That’s 17 deaths for every 100,000 births, 12 more deaths per 100,000 births than seen in the 20 countries in the world with the lowest maternal mortality rates.
Even in California, Black women still face about three times the risk of dying during childbirth than do women in all other racial groups, said Elliott Main, MD, medical director of the collaborative.
“The good news is that the rates went down for all races. The bad news is that we did not narrow the gap,” said Main, clinical professor of obstetrics and gynecology.
The bad news also extends to who develops common life-threatening pregnancy and delivery complications that affect more than 1 in every 100 births. Such complications are on the rise: An analysis of 8.2 million California births found that the risk of severe maternal morbidity, the technical name for these complications, consistently nearly tripled across the entire population between 1997 and 2014.
“I don’t think anyone has a baby and expects to have an emergency hysterectomy or seizures,” said Stanford epidemiologist Stephanie Leonard, PhD, the lead researcher on the study, which was published in the Annals of Epidemiology in 2019.
While the risk of severe maternal morbidity rose for all pregnant women in California during the time period analyzed, the risk was still higher for those who were nonwhite — regardless of socioeconomic factors — and highest among Black women, affecting 1.63% of their births.
“I don’t think the majority of these events were destined to have happened,” said Leonard. “Most of them are preventable.”
Though it’s frustrating, she noted that opportunities now exist for making real change.
Not blaming moms
The traditional explanation for the dramatic jump in severe birth complications goes like this: Women’s health before pregnancy is getting worse. They’re having babies later in life and entering pregnancy with higher rates of diabetes, obesity and hypertension.
But Leonard said that narrative is outdated and “is not the driver.” In a 2019 study published in BMC Pregnancy and Childbirth, her team analyzed how maternal factors — including age, obesity, preexisting conditions and prior cesarean delivery — contributed to severe complications among women giving birth in California between 2007 and 2014.
Severe maternal morbidity rose much faster than the individual-level health markers, they found. Similarly, the pre-pregnancy health and socioeconomic factors of individual women can’t explain the inequality between racial groups.
“The value of big data is that we could say, ‘OK, what if we look at college-educated Black women vs. college-educated white women and adjust for their age and body mass index?’” Main said.
In this comparison, the risk of severe maternal morbidity was still twice as high in Black women. “What’s even more shocking is that it was two times higher than in white women who didn’t graduate from high school,” said Main.
That’s a shock because higher levels of education have been assumed to reduce pregnancy risk. The findings have been presented at scientific conferences, including the March of Dimes annual conference in 2018.
“Many people in the health system like to blame the patient for bad outcomes,” he said. But patient-blaming narratives deliver a triple whammy to healthy pregnancies: They put responsibility for safety on patients instead of the medical system, make it harder for women to bring up their concerns — including potentially serious symptoms — and reduce the likelihood that caregivers will really listen to their patients. “We’re trying to get folks beyond that.”
Leonard and her colleagues, including Stanford’s Suzan Carmichael, PhD, professor of pediatrics, and UC Berkeley collaborator Mahasin Mujahid, PhD, recently tested a theory on birthing disparities that focuses on the health care system rather than individuals.
They hypothesized that Black women may be systematically directed to worse hospitals to give birth. This idea was borne out by data from New York City, where race-biased patterns of delivery location explain half of the gap in birth complications between Black and white women. But in California, the Stanford team found, gaps related to birth hospitals accounted for just 8% of the difference.
Figuring out the true drivers of severe birth complications will require data sets that link women’s birth outcomes, socioeconomic status and geographic location, Carmichael said, but few U.S. jurisdictions share all that data.
California has much richer data than most parts of the country, and the Stanford experts are examining how factors that include neighborhood poverty, segregation and crime weigh into birth inequities.
Changing the trends
The original deep dive into California’s maternal deaths, the California Pregnancy-Associated Mortality Review that began in 2006, identified the top three causes of maternal deaths: cardiovascular disease; hemorrhaging; and preeclampsia, which is high blood pressure that can lead to fatal seizures.
The report’s authors also analyzed medical records from 427 women who died during the year after giving birth, piecing together where better medical care might have helped.
Some deaths occurred in the delivery room, but half of deaths happened three or more weeks after women went home. Some women who died sought care for worrisome postpartum symptoms but weren’t taken seriously, the report found.
Forty-one percent of California’s maternal deaths were likely preventable, the review concluded, noting that hospitals needed better preparation for obstetric emergencies, which can unfold quickly and require a highly coordinated response.
Since the report was published, the Stanford-based collaborative developed eight toolkits for handling the top causes of maternal death and other dangerous birth complications.
The kits provide evidence-based ways for health providers to prepare for each problem, such as equipping all labor and delivery units with a crash cart stocked with blood for transfusion, medications and medical devices to treat hemorrhage.
In a paper published last year in the American Journal of Obstetrics and Gynecology, Main and his colleagues showed that 99 California hospitals that used the hemorrhage toolkit significantly reduced the racial equity gap in patients who hemorrhaged.
At baseline, during 2011-14, about 20% of white women and 29% of Black women who hemorrhaged had severe medical consequences; after the intervention, in 2015-16, this was true of 18% of white women and 20% of Black women.
But, Main said, reducing inequity in hemorrhage is relatively easy. “Hemorrhage happens acutely in the hospital, and we know what to do about it,” he said. “The key is to have a standard approach.”
Much more work is needed to address inequity in clinical situations that are less clear cut, Main said.
“There are a lot of decisions where bias can creep in,” he said. For instance, his team and others at Stanford are launching research to understand why Black women are more likely to have C-sections and not be treated appropriately for iron deficiency anemia.
Maternal-fetal medicine fellow Irogue Igbinosa, MD, hopes to partner with a community birth organization led by Black researchers to explore the experiences of Black women with anemia during pregnancy.
“If you propose a solution without taking into account the perspective of the person’s lived experience, you can do harm,” said Igbinosa. Accounting for how structural racism affects prenatal health care — including anemia treatment — will also be essential, she said. “The problem may have more layers than your original hypothesis.”
Empowering pregnant women
Chidi and Cahill had some exciting success in October, when they published Protecting your birth: A guide for Black mothers, in The New York Times.
The guide gives Black women and their care providers specific steps for addressing the higher risks Black women face, starting with scripts for conversations that acknowledge race and racism “in the room,” and for creating a care plan that anticipates that racism might impact pregnancy.
Chidi and Cahill wanted patients and doctors to feel enthusiastic about the guide, so Cahill spent a lot of time considering how to best reach her obstetrician colleagues.
“In talking about racism, people already feel so defensive, and I thought, ‘Let’s figure out a way for this to be received well,’” Cahill said.
The best approach, they decided, was to have patients introduce their concerns to their doctors by talking about data across populations on worse birth outcomes for Black women. “We can frame it as, ‘Racism is in everything; it is here in this data,’ without saying, ‘You’re a racist person,’” Cahill said.
At the same time, few obstetricians are Black, and Black women have dealt with racism throughout their lives, which needs a place in the conversation.
“Our lived experience, our felt experience, is not something that can be experienced vicariously or through observation,” said Chidi. “That’s why we need to be involved in developing these tools.”
“When you give people sample language that they can right-size to their experience, it’s modeling that there is a way to try to do this,” said Chidi. “We’re providing permission.”
They advise health providers to consciously over-compensate to give better care in situations in which Black women’s health is known to be frequently neglected — such as listening to and acknowledging Black women’s preferences about labor pain management, considering that research shows their pain is often under-treated.
Other advice includes checking Black women’s blood pressure more frequently during pregnancy because they have higher rates of hypertension-related complications of pregnancy.
Feedback on The New York Times article has been overwhelmingly positive, said Chidi, and many physicians have asked for permission to use the article in their practices.
Chidi and Cahill recently received two small grants, from the Stanford Center for Clinical and Translational Research and from the Stanford Maternal and Child Health Research Institute, to survey new Black mothers about whether they think the guide would have helped them. It’s a first step in what they hope will be much more research on the effectiveness of their work.
Igbinosa, the maternal-fetal medicine fellow, who was not involved in Chidi and Cahill’s project, wants the medical system to be pushed harder to listen to Black women and meet their medical needs upfront.
Because many birth complications develop when health providers are slow to respond to a patient’s concern about her symptoms, Igbinosa regularly talks with her patients about how to advocate for themselves. “A lot of these stories boil down to, ‘A woman wasn’t heard,’” Igbinosa said.
Of course, she wishes such conversations weren’t necessary. “We’re putting the onus on the patient, and that’s too much of a burden to bear,” she said.