For Many Black Women, It’s a Familiar Story
She Says Doctors Ignored Her Concerns About Her Pregnancy:
Lying on her living room sofa, her head cradled just under her husband’s shoulder, Brooke Smith pulled out a pen and began marking up her medical records.
Paging through the documents, she read a narrative that did not match her experience, one in which she said doctors failed to heed her concerns and nurses misrepresented what she told them. In anticipation of giving birth to her first child in the spring of 2014, Brooke had twice gone to the hospital in the weeks leading up to her due date because she hadn’t felt the baby kick, her medical records show. And twice doctors had sent her back home.
Brooke, a Black singer-songwriter who has worked as a New York City elementary school teaching assistant, has kept her medical records as a reminder of all that unfolded and all that she believes could have been prevented.
After that second hospital admission, and following some testing, she was diagnosed with “false labor” and discharged, records show, though she was 39 weeks and 3 days pregnant and insisted that her baby’s movements had slowed. Research shows that after 28 weeks, changes in fetal movement, including decreased activity or bursts of excessive fetal activity, are associated with an increased risk of stillbirth. The risk of delivering a stillborn child also continues to rise at or after 40 weeks.
Six days later, she and her husband, Colin, met friends for breakfast. Brooke, then 33, had pancakes with whipped cream, the kind of sugary meal that usually prompted kicks from her baby within minutes. When the baby didn’t move, she told her husband they needed to return to the hospital for a third time.
Her due date had come and gone; this time she wasn’t leaving until doctors delivered her baby.
But at the hospital they learned their baby, a girl they had named Kennedy Grey, had died in Brooke’s womb. She would have to deliver their stillborn daughter.
The doctor, the same one who had been on call during her second hospital admission less than a week before, asked her when she last felt the baby move. Brooke said she had felt rapid, almost violent kicking two days earlier, followed by wavelike movements. The doctor, Brooke said, told her that she should have come in earlier.
“If they would have listened to me earlier, I would have delivered a living baby,” Brooke said recently. “But if you’re a Black woman, you get dismissed because it’s like, ‘What are you complaining about now?’”
For Brooke, her experiences in the last weeks of her pregnancy, along with what she later discovered in her medical records, crystallized what researchers and medical experts have found: While many pregnant people say their doctors and nurses do not listen to them and their concerns are often dismissed, pregnant Black people face an even higher burden.
One 2019 study that looked at people’s experience during their pregnancy and childbirth lamented the “disturbing” number of patients who reported a health care provider ignored them, refused their request for help or failed to respond to such requests in a reasonable amount of time. The study found pregnant people of color were more than twice as likely as white people to report such “mistreatment.”
Another study looking at stillbirths that occurred later in pregnancy highlighted the “importance of listening to mothers’ concerns and symptoms,” including “a maternal gut instinct that something was wrong.”
Every year more than 20,000 pregnancies in the U.S. end in stillbirth, the death of an expected child at 20 weeks or more. But not all stillbirths are inevitable. This year, ProPublica has reported on the U.S. stillbirth crisis, including the botched rollout of the COVID-19 vaccines for pregnant people, the proliferation of misinformation, the failure to do enough to lower a stubbornly high national stillbirth rate and the lack of study of the causes of stillbirths.
Data from the federal Centers for Disease Control and Prevention tells the story of how the U.S. health care system has failed Black mothers in particular. Black women overall are more than twice as likely as white women to have a stillbirth, according to 2020 CDC data, the most recent available. In some states, including South Carolina, Kansas and Tennessee, they are around three times as likely to deliver a stillborn baby.
In Arkansas and MissisFor the stillbirth rate for Black women in 2020 topped 15 per 1,000 live births and fetal deaths; it was more than 11 in New Jersey and New York. The national stillbirth rate for Black women was 10.3 and for white women 4.7.
But drawing focus to Black stillbirths is a challenge in a country where stillbirths, in general, have been understudied, underfunded and received little public attention. In addition, the community of stillbirth researchers and advocates remains relatively small and overwhelmingly white.
Academic studies and national obstetric groups have explicitly identified racism as one of the factors that contribute to persistent health disparities. In 2020, in the wake of the pandemic and the murder of George Floyd at the hands of police, the American College of Obstetricians and Gynecologists, or ACOG, joined around two dozen obstetric and gynecologic health organizations to issue a statement expressing their commitment to “eliminating racism and racial inequities” that lead to disparities.
“Systemic and institutional racism are pervasive in our country and in our country’s health care institutions, including the fields of obstetrics and gynecology,” the statement reads.
Nneka Hall, a maternal health advocate and doula trainer who recently served on Massachusetts’ Special Commission on Racial Inequities in Maternal Health, said disparities are embedded in the health care system, including unequal rates of stillbirths and dying during pregnancy or soon after.
Black women face nearly three times the risk of maternal mortality than white women, according to CDC data. Even at higher educational levels, Black people die during pregnancy or childbirth at higher rates than their white counterparts, as do their babies. Pregnant people are also more likely to deliver prematurely if they are Black.
“It’s the Black experience,” said Hall, whose daughter Annaya was stillborn. “You’re told that you have to advocate for yourself, but when you’re in a melanated body and you advocate for yourself, it’s not taken seriously. If you raise your voice, you’re being abusive or abrasive. If you say you know something, you’re automatically shown that you don’t know as much as you think you know.”
years, Dr. Ashanda Saint Jean has heard the stories of Black patients who, before they suffered the devastating loss of delivering a stillborn baby, said they tried to tell their doctors and nurses that something was wrong.
But they said they were dismissed by their medical team. Even shut down.
With each new story, Saint Jean asked the same question: Would they have been treated differently if they had not been Black? Far too often, she concluded, the answer was yes.
“Those are the stories I hear that break my heart,” she said.
Saint Jean, chair of the obstetrics and gynecology department at Health Alliance Hospitals of the Hudson Valley, said those patients, the very same ones who face an increased risk of stillbirth, are left feeling powerless.
“We know that this is certainly a public health crisis, and it should be a public health priority,” said Saint Jean, a diversity, equity and inclusive excellence adviser for ACOG and associate professor of obstetrics and gysippi,
necology at New York Medical College.
The risk of a stillbirth increases along with the number of “significant life events” a pregnant person faces, including job loss, an inability to pay bills or the hospitalization of a close family member. Black people who are pregnant, research shows, are more likely than their white counterparts to report multiple stressful life incidents.
In 2020, a CDC report examining racial and ethnic disparities in stillbirths identified several factors that might be at play, including the patient’s health before pregnancy, socioeconomic status and access to quality health care, as well as stress, institutional bias and racism. The report found the “disparities suggest opportunities for prevention to reduce” the stillbirth rate.
A spokesperson for ACOG said that the group has been working for years to eliminate racial inequities through policy, training, guidance and advocacy. The group has publicly acknowledged the field’s disturbing history, including the fact that James Marion Sims, who’s known as the “father of gynecology,” conducted medical experiments on enslaved Black women.
Last year, the CDC launched a racism and health web portal, and CDC director Dr. Rochelle Walensky declared racism a serious public health threat, saying in a statement that racism isn’t just discrimination but “the structural barriers” that influence how people live and work.
Dr. Terri Major-Kincade, a neonatologist and health equity expert in Texas, said it’s misguided to highlight disparities among different racial groups without recognizing the lingering effects of racism. She said racism, not race, is responsible for the disparities.
One recent modeling analysis funded by the National Institutes of Health determined lowered levels of segregation decreased the odds of stillbirth for Black people, but had no effect on stillbirths for white people. The researchers estimated decreasing segregation could prevent about 900 stillbirths a year for expectant Black parents.
“A dedicated provider is not going to outshine a system that’s compromised by years of structural bias,” Major-Kincade said. “The system is going to win every time.”
The first and easiest step, she said, is listening to pregnant Black women.
“We can’t prevent every stillbirth,” she said, “but we can sure prevent a lot if we listen.”