Ashlee Paisley was about 23 weeks pregnant when her doctor told her that her iron levels were so low, she would need regular infusion treatments. But it was March, the coronavirus pandemic was sweeping the country, and the last thing she wanted to do was go to an emergency room.
Paisley was able to find an outpatient center to get the infusions, where staff members were scheduling only two patients at a time. Still, with Covid-19 cases rising where she lived in Miami, going to a medical office regularly was “a nerve-wracking thing,” she told Vox. She had to wait two hours for the medication to be delivered, then two more hours for the treatment, all the while exposed to people in the center.
Then, when she called the center ahead of her fifth treatment, she was told it was closed due to the pandemic.
“We’re just going to send everybody to the ER,” a hospital staffer told her over the phone.
“I was like ma’am, you don’t understand, I’m not going to the ER,” Paisley recalls. “That is putting me at high risk as a pregnant woman, to be in there, sitting with people who are coming in with symptoms of Covid.”
Instead of listening to her concerns, the staffer treated her like she had done something wrong, Paisley said, telling her she was “refusing treatment” and saying she would have to put a note in her file. “She was really being nasty to me,” Paisley said.
Paisley, who is Black, believes the staffer treated her differently because of her race. “I’m sure if her daughter was calling her,” she would have warned her not to go the emergency room during a pandemic, Paisley said. “But it was okay for me to go to the ER.”
“That was a really big turning point for me,” Paisley said. That night, she told her husband, “we’re not having the baby in the hospital.”
Paisley’s story is one of many like it. Long before the pandemic hit, Black pregnant and birthing people around the country were reporting that doctors disregarded their concerns, ignored their wishes, and put them at risk. Out of 10 similarly wealthy countries, the US had the highest number of maternal deaths per capita in 2018. Black women are disproportionately impacted, dying in childbirth at three to four times the rate of white women.
Now, birthing people and their advocates say the Covid-19 crisis is only exacerbating the discrimination that Black patients and other patients of color already face from providers — one of the main drivers behind their higher rates of maternal mortality. In response, some people are looking outside of hospitals, to midwives, home births, and birthing centers they feel are more likely to provide them with the care they deserve.
Increasing access to such out-of-hospital care is critical to making birth more equitable for Black Americans and others who have faced discrimination in medical settings. But so is improving the health care system at all levels so that people who do give birth in a hospital receive good care there, too.
“In the US we have dictated safety to mean the highest level of technology,” Joia Crear-Perry, an OB-GYN and the president of the National Birth Equity Collaborative, told Vox. “But when it comes to birthing, the evidence shows us that what makes us safe is actually being heard and listened to and valued.”
Now, she said, the question is, “how do we create a system that does that all the time” — both during the pandemic and beyond?
The maternal mortality crisis in America goes back to the very beginning of gynecology
Maternal mortality has been rising across the United States for decades. Between 1987 and 2015, the rate of women dying in childbirth more than doubled, even as it fell in other countries, according to US News & World Report. And Black birthing people are dying at especially high rates — in 2018, the maternal mortality rate for Black women stood at 37.1 deaths per 100,000 births, compared with 14.7 deaths per 100,000 births for white women.
Many factors contribute to overall maternal mortality in the US, from underlying conditions like diabetes to a lack of adequate health insurance. All of these disproportionately impact Black women — Black Americans, for example, are 60 percent more likely than whites to be diagnosed with diabetes. And 11.5 percent of Black Americans were uninsured as of 2018, compared with just 7.5 percent of whites.
But differences in things like chronic illness, insurance, or socioeconomic status still don’t fully explain the gap between Black and white maternal mortality rates, experts say.
For Black women, “even when we get prenatal care,” Crear-Perry explained, “even when we are normal weight and not obese, even when we have no underlying medical conditions, we are still more likely to die in childbirth than our white counterparts.” In New York City, for example, a 2016 study found that Black patients with a college education were more likely to have pregnancy or childbirth complications than white patients who hadn’t graduated from high school.
The reason, Crear-Perry said, is simple: “When Black birthing people have worse outcomes, it’s because of racism.”
Part of the issue is that providers treat Black patients differently from white ones. Black women and other women of color often aren’t listened to when they express pain or discomfort, Jamila Taylor, director of health care reform at the Century Foundation, told Vox.
Racist beliefs about people’s bodies and their ability to experience pain are shockingly widespread: Half of the white medical students and residents surveyed in one 2016 study, for example, believed at least one myth about racial differences in pain perception, such as the idea that Black people’s nerve endings are less sensitive than white people’s. The more myths someone believed, the more likely that person was to underestimate a Black patient’s pain.
The denial and dismissal of such pain are rooted in the history of obstetrics and gynecology in the United States. In the 19th century, “father of modern gynecology” J. Marion Sims performed experimental surgeries on enslaved women without anesthesia. Sims developed a technique for repairing vesicovaginal fistulas — an injury that can occur after childbirth. But he did so by experimenting, again and again, on Black women who were brought to him by their enslavers, as medical historian Vanessa Northington Gamble told NPR in 2016. He performed 30 surgeries on one woman, identified in his papers as Anarcha, who had developed a fistula after a traumatic birth at the age of 17.
Sims allowed other physicians to watch his surgeries, which he performed while the women were naked. “When we think about it, I think we think about pain,” Gamble told NPR. But “we also need to think about how these women’s dignity were also taken away from them.”
The legacy of such abuse, and the perception that “Black women don’t feel pain or they have thicker skin,” persists today, Taylor said, and “it’s also translating into the type of maternal health care that they receive.”
In a 2018 study in California, more than 10 percent of Black mothers said they were treated unfairly during the birth process because of their race. Black mothers were almost twice as likely as white ones to say they felt pressured into getting a C-section. And nearly a third said hospital staff did not encourage them to make their own decisions about the birth, while only 20 percent of white mothers said the same.
Paisley experienced some of these issues with the birth of her first child, a daughter who is now 4. After she arrived at the hospital, staff said her labor wasn’t progressing quickly enough, so she needed an epidural. When she said that wasn’t part of her birth plan, a nurse responded, “I’m sure it’s not, but these things happen.” Paisley said she was concerned about an epidural because she had a curvature of the spine that might make it difficult to place, but her concerns were waved off.
Her epidural ended up coming out multiple times, and she suffered a “wet tap,” a puncture in the lining of the spinal cord causing spinal fluid to leak out. As a result, she suffered a severe migraine while still in labor. After her daughter was born, doctors told her that she couldn’t nurse and that the baby would have to be transferred to the NICU, but didn’t tell her why. She only learned the reason (doctors were trying to rule out sepsis) when her daughter was discharged, six days after she was born.
Paisley and her daughter are both healthy now — but, she says, “my first birth was a nightmare.”
Covid-19 has exacerbated the barriers Black birthing people face
Many say the discrimination Paisley and other Black birthing people face — alongside Indigenous and other patients of color — has only gotten worse as Covid-19 sweeps the country.
In April, for example, 26-year-old Amber Isaac, who was pregnant with her first child, was admitted to a hospital in the Bronx with a severely low platelet count, according to The City. Doctors found she had HELLP syndrome, a type of preeclampsia that can be highly dangerous. Her platelets had been falling since February, and she had been asking doctors for an in-person appointment, but she was only offered telehealth appointments due to the pandemic. On April 17, she tweeted that she couldn’t wait to share her experience “dealing with incompetent doctors.”
Can’t wait to write a tell all about my experience during my last two trimesters dealing with incompetent doctors at Montefiore
— ✨ (@Radieux_Rose) April 17, 2020
But Isaac was unable to tell the world about what she went through — she died on April 21, just after giving birth to her son.
“Covid-19 did nothing except exacerbate the phenomenon of, Black people are not believed when we go in for health care,” Monica McLemore, a professor of family health care nursing at the University of California San Francisco, told Vox. “We are not heard, we are not listened to.”
In some cases, the switch to telemedicine for prenatal care seems to be worsening disparities. As coronavirus spread this spring, many providers moved at least some prenatal appointments to phone or video chat to lessen transmission risk. For some, telehealth has been a blessing, allowing them to see doctors without the need to travel or find child care. And for some trans patients, especially those of color, remote health care has the advantage of putting some distance between them and providers who might misgender or otherwise discriminate against them. “They don’t have to have the in-person conflict while they’re trying to receive care,” McLemore said.
But in other cases, telemedicine has made it even harder for Black patients to get their concerns taken seriously, as some struggle to convince providers that they need to be seen in person. “If nobody’s believing you,” McLemore said, “then it’s just another barrier.”
And some patients — especially low-income people and those living in rural areas or on reservations — cannot access telehealth at all because of a lack of internet access or the right device. Telehealth “is a great option for people, but there’s still a digital divide,” Taylor said.
Meanwhile, the pandemic has also introduced a new risk factor for Black birthing people: isolation. Several studies have shown that having a doula or other support person present during birth can improve outcomes for birthing people and their babies. And doulas — coaches who assist people through birth and sometimes the prenatal and postpartum periods as well — are especially important for Black patients and others who experience discrimination during birth, Jamarah Amani, a midwife and the director of the Southern Birth Justice Network, told Vox. “Having an advocate there can be lifesaving,” she said. It can be instrumental in “getting the right medication that you’re supposed to get, or being heard about the symptoms that you’re experiencing or about your pain level.”
“Doulas, for many marginalized people, are essential,” Amani said. “They’re essential workers.”
But as coronavirus spread around the country this spring, many hospitals instituted limits on the number of people who could accompany pregnant people into the delivery room, forcing patients to choose between a partner and a doula. While some of those policies have been reversed, some hospitals around the country continue to limit birthing people to one support person, McLemore said. The limits on visitors were intended to conserve personal protective equipment and slow the spread of Covid-19, but when implementing them, hospitals didn’t consider the disproportionate impact they could have on Black patients. “To have that be universally applied when we know that risk of harm in hospitals and other health care institutions is not equally shared, is a problem,” said McLemore.
And it’s not just what happens during birth — but also after. To limit the spread of Covid-19, some hospitals are separating birthing people from their infants immediately after they are born. Many medical experts advise against such a practice, even if the birthing parent tested positive for the virus, as newborns have not become severely ill in high numbers and separation can inhibit bonding and breastfeeding. But some say hospitals are doing it anyway, sometimes without parents’ permission — and families of color may be especially at risk.
Multiple birthing people and birth workers have reported such separation to Elephant Circle, a birth justice group that is collecting reports of mistreatment and abuse during the pandemic. One witness reported that a mother who did not speak English was denied an interpreter, then “coerced and bullied into agreeing to being separated from her newborn immediately at birth and indefinitely” due to a positive Covid-19 test. “Scare tactics were used and she was not allowed to initiate breastfeeding,” the witness reported.
In another case, a doula reported that since her client had a fever, her newborn “was whisked away: no skin-to-skin no physical contact at all.” Despite negative Covid-19 tests, the mother was not allowed to see her baby for the duration of her hospital stay and “there was no explanation nor support regarding what transpired.”
At one hospital in Albuquerque, clinicians say that some staffers are taking newborns away from birthing people if the families appear to be Native American, even in the absence of a Covid-19 test, ProPublica reported in June. “I believe this policy is racial profiling,” a clinician told ProPublica. “We seem to be specifically picking out patients from Native communities as at-risk whether or not there are outbreaks at their specific pueblo or reservation.”
Overall, many say that separating newborns from parents during a vulnerable time for establishing breastfeeding has no medical rationale, especially when they will be sent home together after the birth anyway. “Lactation has never been limited, even in pandemics,” McLemore said. Separation “makes no sense.”
The pandemic also threatens to close hospitals and maternity wards around the country
Beyond discrimination by providers, the pandemic is also exacerbating other inequities Black birthing people face, including the difficulty of even finding a doctor to treat them. Decades of redlining, the racist practice of denying mortgages to Black people and other communities of color, has left cities and towns segregated across America. And communities with a high proportion of people of color don’t get the same investment as majority-white, suburban neighborhoods, Taylor said.
“You go into those communities, you have state-of-the-art health facilities, the best technology,” she said. “You just don’t see that in majority-minority neighborhoods.” For example, Washington, DC’s Wards 7 and 8, majority-Black parts of the city, do not have maternity facilities.
In addition, obstetric services have been disappearing from rural counties around the country for years, Katy Kozhimannil, director of research at the University of Minnesota’s Rural Health Research Center, told Vox. The cause is a combination of factors including declining revenues, lack of trained doctors and nurses in rural areas, and clinician concerns about their own ability to handle higher-risk births, especially if they lack adequate training or resources.
And like in urban areas, patients of color are disproportionately affected. Rural counties with a high percentage of Black residents were more likely to lack hospital maternity wards in the first place, and to have them close between 2004 and 2014, according to research by Kozhimannil and her team.
The result of a lack of hospitals in communities is that pregnant people to travel far from where they live, and “too often it means that women go without the health care that they need,” Crear-Perry said. “There are times that women, particularly low-income women of color, will show up to a hospital to give birth, [and] they haven’t had one prenatal care visit.” And lack of prenatal care is associated with an increased risk of maternal mortality and morbidity, as well as a higher risk of infant mortality.
Now, with elective procedures postponed and fewer people coming for care — which means less revenue — hospitals around the country are under even more strain during the pandemic than they were before. More than 250 hospitals have furloughed staff as a result of the crisis, according to Becker’s Hospital Review. Between early March and mid-April alone, at least two rural hospitals shut down and two more announced plans to do so, Becker’s reported.
Hospitals and clinics that see a large number of Medicaid and other low-income patients are at especially high risk, many say. “There are safety-net hospitals that aren’t going to make it out of this crisis,” Laurie Zephyrin, vice president of health care delivery system reform at the Commonwealth Fund, told Vox. “What does that mean for providing maternal health care when hospitals are closing and birth workers are not able to do their job?”
Meanwhile, even hospitals that remain open have struggled to continue delivering babies as they treat rising numbers of Covid-19 patients. St. Bernard Hospital on the South Side of Chicago actually stopped labor and delivery care earlier this year in order to focus on Covid-19, as Kelly Glass reports at the New York Times.
And in rural Nobles County, Minnesota, cases skyrocketed earlier this year after an outbreak at a meatpacking plant, Kozhimannil said. “That small hospital is overwhelmed with this,” she told Vox in June — and there aren’t very many other places nearby to give birth. “If you’re in that circumstance, there are limited resources available to you as a birthing person,” she said. “Hospitals are really strained and very, very focused on immediately addressing the pandemic first.”
It’s likely too soon in the pandemic for researchers to see the full impact of the crisis on maternal mortality and morbidity, McLemore said, and they haven’t seen an overall spike in the numbers yet. But, she noted, many pregnancy-related deaths happen in the postpartum period, with about half occurring at least a day after birth and more than 30 percent happening at least a week afterward. Postpartum follow-up with new parents was already spotty before the pandemic began. Now, it’s sometimes nonexistent. “My worry would be that we would be missing things in the postpartum period,” McLemore said.
And in the months and years to come, the situation is likely to get worse, not better, thanks to pandemic-related budget cuts that will further threaten hospitals, patients, and programs designed to address maternal mortality. In Tennessee, for example, a proposed expansion of postpartum Medicaid coverage is likely to be scuttled due to budget cuts. New York State’s latest budget legislation includes $138 million in cuts to New York City public hospitals, which serve predominantly Black and Latinx residents, as Emily Bobrow reports at the New York Times.
“When we have fewer revenues, in many cases the programs for poor people are the first on the chopping block,” Alina Salganicoff, director of women’s health policy at the Kaiser Family Foundation, told Vox.
Overall, an existing maternal mortality crisis has combined with the threat of the pandemic to leave pregnant and birthing people isolated, disregarded, and at risk. But it doesn’t have to be this way.
Fixing the crisis starts with giving birthing people choices
After Ashlee Paisley was told she would need to visit the ER in the midst of a pandemic to get iron infusions, she started looking for alternatives to a hospital birth. She found Magnolia Birth House, where Amani is one of the midwives.
Paisley “instantly fell in love with her,” she said. “When she speaks to you, she’s teaching you.”
Amani and the staff at Magnolia walked her through the rest of her pregnancy. And on June 20, at 41 weeks pregnant, Paisley gave birth to her son with Amani and her husband by her side. Her oldest daughter was allowed to come to the birthing center, and staff there cared for her during the birth.
“When she came in after I had the baby, she had made him a birthday card,” Paisley said.
Overall, Magnolia “was so different from being in the hospital,” Paisley said. “I could not believe the support that I could feel.”
Advocates have long been calling for greater access to non-hospital births, whether at a birthing center or at home, as a way to combat the discrimination Black patients and other patients of color can face in hospital settings. “Other countries that have better outcomes than we do create a system and a network of birth centers and home births that allow for people to make choices based upon their needs,” Crear-Perry said.
In the UK, for example, where the rate of maternal mortality is less than half that in the US, midwife-led maternity units, similar to birthing centers, are an integrated part of the health care system, as Alice Callahan reports at Undark. Midwives are responsible for most low-risk births in Britain, with OB-GYNs stepping in only for more complex cases. In the US, only 8 percent of births are attended by a midwife, according to ProPublica.
But midwife care is all about listening to pregnant patients — exactly what birthing people in America need to be and feel safe, Crear-Perry said. And expanding access to it is especially critical for Black patients, who have historically been mistreated in hospital settings.
“Our health care system was built with a belief that Black people were broken,” Crear-Perry said. “The same negative assumptions that happen around Black men when it comes to interacting with police is what Black women feel inside of health care and hospitals.”
The pandemic has drawn enormous attention to home birth as many people search for alternatives to overstretched hospitals. That includes white patients, who are now facing some of the same fears Black birthing people have long dealt with, Crear-Perry said, including not being listened to by hospital staff. Midwives and doulas around the country are seeing higher demand, and in some urban areas, like New York, home-birth midwives’ calendars are fully booked, largely driven by a spike in requests from white women, Crear-Perry said.
But the growth in interest hasn’t necessarily translated into better access — Florida, where Paisley lives, is one of just five states where Medicaid and other insurance plans are required to cover out-of-hospital births. And even there, insurance doesn’t cover all costs, meaning patients typically pay $300 to $1,000 out of pocket for a birth, Amani said, putting the option out of reach for many low-income patients.
The Southern Birth Justice Network and other groups focused on Black maternal health and rights are calling for comprehensive insurance coverage and other support for midwife care as one way to help Black Americans have better birth experiences. “We are about bringing midwifery care back to the community in a way that there’s access, in a way that families can feel supported and held and cared for,” Amani said. “Midwives have always offered that kind of protective factor within their communities, so that’s what we’re looking to restore.”
But birth at home or a birthing center is by no means for everyone — some underlying conditions, like diabetes, can make home birth more dangerous; it’s also not an option when a baby needs to be delivered by C-section. And plenty of people of all races would prefer to give birth in a hospital. “I don’t want a home birth,” Crear-Perry said. “I had three children who were born in hospitals.”
That’s why in addition to greater access to out-of-hospital births, she and others are calling for a slate of reforms to keep Black birthing people and other patients of color safer regardless of where they deliver. Access to Black practitioners and others who represent the communities they care for, whether they are midwives, nurses, or OB-GYNs, is critical, Crear-Perry said. Indeed, a 2019 study found that Black patients got better care when they saw Black doctors, and another study found that patient outcomes were better when hospitals specifically focused on the experiences of the communities they served, as Glass reported at the Times.
Some proposals already in Congress would address the crisis. The Black Maternal Health Momnibus, for example, a legislative package introduced this year by Reps. Lauren Underwood and Alma Adams and Sen. Kamala Harris, would address the lack of providers in many majority-Black communities by funding the expansion and diversification of the maternal and birthing care workforce, including nurses, physician assistants, and doulas. The legislation would also provide funding for community-based organizations working on Black maternal health, among other provisions.
However, “we need the political will to pass something and to implement it if it does pass,” Taylor said. “We wouldn’t have that under this administration.”
In other words, in order for change to happen, leadership has to come from the top. In a recently released policy agenda, the National Birth Equity Collaborative calls for an Office of Reproductive Wellbeing in the White House that would address barriers to all aspects of reproductive autonomy, from maternal health to contraception to child care.
“All of these things can happen if we have the highest levels of government invested in them,” Crear-Perry said. “If we keep doing it on the margins, and trying to fix little tweaks here and there, and investing in structures that have been harmful, we will never get to this beloved community of birthing that we all want.”