Originally published on ProPublica.
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 wave-like 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 Mississippi, 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 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.
The Why explores why Black women are at higher risk of pregnancy-related issues and the importance of reducing the risk.