Boston researchers have begun collecting the stories of local Black mothers who recently gave birth to find out why they are more likely to die during pregnancy and childbirth when compared to women of other races.
Black women in Massachusetts are nearly twice as likely to die from pregnancy-related causes than white women, according to 2015 data. The UMass Boston Birth Equity Study is designed to help lawmakers and health officials better understand those higher rates of death.
“We want to learn about the effect of racism and sexism on their health and on their most recent pregnancy and their ability to effect change,” said Dr. Laurie Nsiah-Jefferson, a co-investigator on the study at UMass Boston’s McCormack Graduate School of Policy and Global Studies.
Researchers are recruiting 100 volunteers who delivered a baby within the past year in Boston-area hospitals. The women must be 18 or over, and they will confidentially tell their birthing stories online. Those responses will be used to craft both medical and hospital policies, as well as public policy.
“Black women need to be at the table. We need to hear Black women's voices,” said Dr. Lisa Heelan-Fancher, another co-investigator who is with UMass Boston’s College of Nursing and Health Sciences.
Fourteen years ago, Nickey Nesbeth of Boston delivered her baby in a Boston hospital, and she still hesitates to talk about the birth of her son. What many parents call the greatest day of their lives, Nesbeth calls traumatizing.
“Just this past December, before we came into 2021, I wrote down my birthing trauma story because I hadn’t shared it with anyone,” Nesbeth said.
The birth was difficult, it was scary and she still wonders why it happened the way it did.
“I was in excruciating pain, I wouldn't dilate and the doctors were so nonchalant about the just excruciating pain I was in, I literally thought I got to the point where I thought I was going to die and I thought my baby was going to die,” she said.
And women do die. And so do their babies, particularly when they are women of color.
With the Birth Equity Study, policymakers, academics and health officials are hoping the personal narratives they collect can help them understand the increase in maternal mortality and morbidity in Black women when compared with women of other races.
“I did not know that we were getting different treatment because of our color,“ Jacquelyn Fitzhugh of Lynn said, “until we were left in triage unattended.”
Fitzhugh talked about the day her daughter gave birth just a few weeks earlier. Fitzhugh was there for support, and said it was an awful experience. She questioned whether race precluded her family from getting proper care.
Fitzhugh was one of dozens of women who told birthing stories at a virtual town hall meeting at UMass Boston in June, when health officials outlined the new birth equity study seeking volunteers.
Stephanie Johnson is a Boston-based midwife — the only Black, home-birth midwife practicing in the state of Massachusetts. She said that, in her experience, women of color are encountering racism.
“This bias of being a Black woman and coming into the space without even knowing us and just automatically mistreating us,” Johnson said, “from the moment we walked in the door is something that is prevalent.”
Along with being more likely to die from pregnancy-related complications, Black women in 2019 also had more pre-term births than women of other races. Pre-term births account for 60 to 80% of all infant deaths.
And things are getting worse.
Dr. Neel Shah is an assistant Professor of Obstetrics Gynecology and Reproductive Biology at Harvard Medical School. He references CDC data that says the gap between Black and white maternal mortality has increased over the past few decades.
“So, a person living in the United States today is about 50% more likely to die in childbirth than her own mother was," Shah said. "And the deaths are actually just the tip of a deep and wide iceberg.”
Shah said birth inequities statistics have galvanized medical experts and legislators to address the issue. One way is to look at the risks of maternal mortality in our society and how to minimize it.
“If you're Black in America, you're at considerably higher risk," Shah said. "And that risk isn't due to anything biological. It's really due to a system that's sort of set up to create those outcomes.”
Dr. Amutah-Onukagha, associate professor in the Deptartment of Public Health and Community Medicine at Tufts University School of Medicine, said there’s been a shift in thinking around this issue.
“We're starting to recognize that even after you control for different factors such as preexisting health, chronic conditions, that we’re still seeing this exacerbation of maternal mortality and maternal morbidity in Black and brown women.”
Researchers are left asking why — why are there so many more deaths among Black women and their babies? And what role does racism play? That led to the creation of the UMass Boston Birth Equity study.
And a newly formed state Racial Inequities in Maternal Health Commission expects to use data from the study to help craft policies related to birth inequities and investigate barriers to accessing prenatal and postpartum care. State Rep. Liz Miranda of the Fifth Suffolk district and State Sen. Rebecca Rausch of Needham sponsored the legislation to establish the commission.
For Miranda, the issue is professional and personal.
“The most important person I thought about that day was that my sister Cristina has always wanted to be a mother,” she said. “And Cristina gave birth to a baby girl named Mila at 21 weeks. And I was present for that birth. But after the birth, Mila didn't survive.”
Rausch said the personal stories will be important to the commission’s work.
“I also hope that the stories of people’s lived realities, of giving birth in the Commonwealth, hopefully both before and during the pandemic, will show up in the commission’s report,” she said.
Fitzhugh, who recounted how her daughter was mistreated during childbirth earlier this year, said the time has come for Black women to receive equitable treatment and feel safer giving birth in a hospital.
“To me, delivering a baby is the most vulnerable you can be as a woman,” Fitzhugh said. “I mean, you’re is so much pain. Someone can tell you anything and you would go along with it. So, you really need a system in place that you can trust.”
The study is expected to conclude in the fall. The Racial Inequities in Maternal Health Commission has until March 2022 to file a report, make recommendations and draft legislation.
Correction: A previous version of this article said that Black women in Massachusetts were 2.5 more likely to die for pregnancy-related reasons than other women. That has been corrected to nearly twice as likely compared to white women, per 2015 data.