By Madeleine List
Journal Staff Writer
Posted Apr 27, 2019 at 3:14 PMUpdated Apr 27, 2019 at 3:15 PM
Rhode Island health officials and community activists are working to improve care for pregnant black women, who face more maternity-related complications than their white peers, according to national and state data. Just as troubling, patients say, is the implicit bias they experienced from medical staff during labor and delivery.
Ayo Henry remembers sitting in the emergency room after going into labor with her second baby in 2010.
Her cesarean section wasn’t scheduled for another three days, but she’d started having contractions, and since she had given birth to her first child by C-section 14 months earlier, she was worried about the risk of uterine rupture during labor.
“I was labeled high-risk at this point,” Henry, who is black, said during a recent interview.
The doctors, though, brushed off her concerns, she said. They told her to wait until her scheduled surgery and sent her home with a prescription for the sedative Ambien.
“I remember coming home and Googling, ‘Is Ambien even safe to take when you’re pregnant?’” she said. “I remember being scared. I was scared for three days that possibly I was going to rupture.”
Henry had another reason to be scared.
“Every black woman knows another black woman who almost died when she gave birth,” she said.
It’s that reality that has brought mothers, physicians, community members and advocates together to promote better outcomes for black women, who, according to the Centers for Disease Control and Prevention, are three to four times more likely to die from pregnancy-related complications than their white peers nationally. After the second annual Black Maternal Health Week concluded earlier this month, advocates in Rhode Island said much work remains to be done.
Between 2008 and 2017 in Rhode Island, there were 13 total maternal deaths, which are pregnancy-related deaths that occur within 42 days of the end of a pregnancy. Seven of the women were white, two were black, three were Hispanic and one was of another race.
Nicole Alexander-Scott, the director of the Rhode Island Department of Health, said the statewide numbers are too small to report as rates or percentages, but the data show that black women in Rhode Island experience other types of pregnancy-related complications at higher rates than their white counterparts.
Between 2013 and 2016, black women experienced severe maternal morbidity at nearly twice the rate of white women, according to the Department of Health. Severe maternal morbidity means a woman will experience significant health consequences resulting from her pregnancy, such as eclampsia, a dangerous pregnancy-related condition characterized by high blood pressure; hysterectomy; or cardiac arrest.
According to Rhode Island Kids Count, between 2013 and 2017, 21.8% of black women receive delayed or no prenatal care, compared with 12.2% of white women; 11.3% of black women have preterm births, compared with 8% of white women; and 11.2% of black women give birth to low-birthweight infants, compared with 6.4% of white women. The rate of infant mortality among black women is 12.2 per 1,000 live births; for white women, it is 3.5 per 1,000 live births.
These disparities, in part, are due to socioeconomic and environmental factors, Alexander-Scott said, but the racial disparities in maternal health persist even across income and education levels.
“We recognize that there is a race-related issue that has to be discussed in addressing this disparity as well,” Alexander-Scott said. “Because when you account for socioeconomic status and these community-level factors that we know are critical, there are still African-American women who, research has shown, are at risk of maternal morbidity and mortality.”
What’s harder to measure with data is the effect of racism on black women’s long-term health and how implicit bias affects the treatment they receive in hospitals, advocates say.
“It’s not a bad doctor. It’s not these individual issues that people like to piece out so they’re not addressing the whole thing,” said Abeer Khatana, a member of Sista Fire, an organization led by women of color that works to advance racial- and social-justice causes. “Women are dying because of racism, because of structural racism, and that’s what’s happening.”
Henry ended up having a successful C-section and gave birth to her daughter on Dec. 10, 2010. But her dissatisfaction with the hospital didn’t end after her delivery.
Nurses took her daughter to the nursery, but Henry wanted to hold her and breastfeed her as soon as possible.
“I pressed the nurse call button,” said Henry, who is now 32 and lives in Providence. “I waited and waited. It was four hours before I decided to just get up myself because no one was coming.”
She unhooked herself from her catheter and IV drip and walked down the hall to find her baby. After knocking on the window of the nursery to get the attention of a nurse, she was able to take her baby back to her room.
“I was just really disappointed with the experience,” she said.
After Ekatherina Babovnikov gave birth to her baby at Women & Infants Hospital in February, she listened as a doctor directed a medical trainee on how to stitch up her episiotomy, a surgical incision made to aid in childbirth. Women & Infants Hospital is a major teaching affiliate of the Warren Alpert Medical School at Brown University.
Babobnikov, who is now 34 and lives in Central Falls, could tell that the person stitching her up wasn’t experienced, and she didn’t feel comfortable with the procedure, especially since she’d just had a 12-pound baby and a difficult delivery.
The doctor “was saying things like, ‘The next one you do, make it deeper, because the last one wasn’t like this, and you want to make sure you’re doing it like that.’ And I just had the impression like, maybe she’s not doing it as good as someone who’s more experienced would’ve done it.”
During her two-day stay at the hospital, Babobnikov said, nurses also asked her prying questions that didn’t seem relevant.
“Asking me about my other kids at home, who’s with them, who’s my husband, does he work, where does he work, and I’m just wondering, what does this have to do with my baby’s care or my care here?” she said.
When Adria Marchetti was pregnant with her son in 2014, she went to the emergency room days before her due date because she thought she had gone into labor. But the physicians told her that it wasn’t labor and that she should go home and wait for her doctor’s appointment, which was scheduled for two days later, Marchetti recalled in a recent interview.
Before she went home, though, multiple medical trainees came in to conduct exams on her and ask her repetitive questions about her symptoms.
“They sent in every resident, every student that they could find, basically, to come in and do a pelvic exam on me,” said Marchetti, who is now 39 and lives in Johnston. “It was just obvious that they were training on me while I’m in pain, and they’re telling me I’m not in labor, I’m not far enough along.”
She went home and suffered with the pain for two days while also caring for her 3-year-old when her husband was working. But she was desperate not to return to the emergency room.
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By the time she got to her doctor’s appointment days later, the doctor said, ”‘You are in active labor. What are you doing here? Go to the hospital right now,’” Marchetti said. “Because I had been being gaslit so many times at the emergency room of, ‘Oh this is not labor,’ I was not trusting my own body anymore.”
When she got to the hospital, she was exhausted and in pain. She remembers that the anesthesiologist who gave her the epidural was hasty and apathetic, “as if getting a needle stuck in your spine was a cakewalk,” Marchetti said.
“I still have pain in the spot where I had the epidural, and I have chronic back pain that I did not have prior to my last birth,” she said. “It was just dehumanizing to feel like this person had no empathy for the fact that I was in labor.”
These types of stories are shared by women of color across generations and backgrounds, said Ditra Edwards, co-founder and director of Sista Fire, which hosted a community listening session in February where women in the Providence area opened up about their hospital experiences.
“A common thread was an assumption that women of color don’t know what’s right for them and either they’re unstable or unwell or they’re endangering their child or they’re unfit parents,” said Alexa Barriga, a member of the group. Even women who were health professionals themselves or had personal relationships with medical staff reported these types of experiences, she said.
In a medical field that is predominantly white, there is a sense that black women, even wealthy, high-profile women like Serena Williams, who shared her own delivery horror story last year, aren’t taken seriously by medical professionals, advocates say.
In Rhode Island, about 4.7% of health-care workers are black, according to a 2017 report from the Department of Health. The data collected for the report was self-reported and gathered through a randomized phone survey, according to Joseph Wendelken, spokesman for the department.
“Overall, it’s just the bias that black women don’t need the same level of care,” said Andrea Ray, 39, of Pawtucket, who spoke at a film screening and discussion on black maternal health hosted at the Planned Parenthood Providence Health Center on April 16.
Also, she said, “Our tolerance of pain is ignored or is expected to be higher than other races, and I think that’s a piece we don’t talk about.”
These assertions are echoed by experts, including Timoria McQueen Saba, a Boston-based maternal health advocate who has written extensively on the topic for Huffington Post.
The underrepresentation of black professionals in medicine and lack of cultural competency training in the field contribute to the racial disparities that exist for patients, she wrote in an email.
“Racism is the leading cause of disparities and inequity in outcomes,” she wrote. “Outcomes will not improve until healthcare providers invest in implicit bias and cultural competency training. They have to view this type of training as something valuable and essential to how they conduct themselves with patients.”
In a statement, Women & Infants Hospital spokeswoman Amy Blustein said the hospital requires all of its employees to take educational training on cultural competency and holds training sessions on unconscious bias. The hospital is also undergoing an evaluation of its care processes to identify any gaps in care and has begun meeting with community groups that are involved with working to end health disparities.
“As national leaders in the field of women’s health and newborn care, Women & Infants Hospital is committed to addressing the complex issues related to eliminating disparities in health care and achieving health equity,” the statement says. “Our health care providers strive to be culturally sensitive and informed about the issues that may contribute to disparities in care.”
Black women also suffer from postpartum depression at nearly twice the rate of mothers of other races, and because of stigma in wider society as well as in the black community around mental-health care, only a small percentage seek help, according to McQueen Saba, who herself was diagnosed with post-traumatic stress disorder after a traumatic birth and near-death experience.
“In the Black community, surviving in America has demanded that our women be strong and have an indomitable spirit, even in the worst of times,” she wrote. “Historically, we’ve never been given permission to be vulnerable and ask for help. … We have to normalize the conversation about mental health.”
In 2015 in Rhode Island, 17.9% of pregnant black women were diagnosed with depression during pregnancy, compared with 8.4% of white women, according to the Department of Health. Rates of postpartum depression were even higher, with 29.7% of black mothers experiencing postpartum depression symptoms compared with 9.5% of white mothers.
At a community forum hosted at Women & Infants on Thursday morning by Care New England and the Hospital Association of Rhode Island, community advocates and health-care officials discussed the issues behind these disparities and what can be done about them.
Edwards, who represented Sista Fire at the meeting, said officials need to be explicit in naming the underlying cause: structural racism.
“When we’re not naming it, it doesn’t get addressed,” she said.
Matt Quin, interim CEO of Women & Infants Hospital, said at the meeting that he was aware of the hospital’s need to diversify its workforce.
“Our employee population doesn’t mimic and doesn’t look like … our patient population,” he said.
He conceded there were things the hospital wasn’t doing well in terms of addressing disparities in care and meeting all of the diverse linguistic needs of its patients. The hospital is committed to doing better, he said.
“I do think that our interest is to have tangible action steps we can take following these types of discussions,” he said.
The hospital needs to be held accountable, because, Edwards said, “Our community is pissed.”
Because black women experience the worst maternal-health outcomes compared with women of other races, if results for them improve, it will mean an advancement in maternal health across the board in America, where women are more likely to die in childbirth or from pregnancy-related causes than they are in any other developed nation, according to the Centers for Disease Control and Prevention.
“If we improve the care of black women, then everybody gets a boost,” said Temperance Taylor, a family nurse practitioner who spoke at the April 16 screening at Planned Parenthood. “Because we are the worst-treated, if we raise the standard for everyone, then we all win.”
Increasing access to doulas, certified advocates who provide guidance and support to women during pregnancy, is a major part of the solution, said state Rep. Marcia Ranglin-Vassell, D-Providence, who introduced a bill this legislative session that would mandate that doula services be covered by Medicaid and private insurance, up to $1,500. Ranglin-Vassell herself was diagnosed with pre-eclampsia after giving birth to her twins 23 years ago. She has had chronic hypertension ever since.
Currently, most insurance providers do not cover doulas, who in Rhode Island generally charge $800 to $1,200 for their services. That fee typically include two prenatal visits, accompaniment through labor and delivery and one postpartum visit, said Quatia Osorio, who has been a doula in the Providence area for four years.
Osorio said she decided to become a doula after realizing that there were no doulas of color in Rhode Island. Since undergoing her training, she has worked to certify other women of color to become doulas and formed the Umoja Nia Collective, a group of doulas of color that currently has about six members.
As a black woman, she said she is well aware of the national statistics around black maternal health and implicit biases that exist in medicine. Because of this, she is in a unique position to advocate for her black clients.
“I know exactly how they feel, because I am that woman,” she said. “I am that person who is likely to be high-risk, likely to have a premature baby, all of the assumptions that come at me, and I have to combat that. I know intimately those feelings.”
Osorio, who helped draft Ranglin-Vassell’s bill, said she supports the legislation because she believes it would increase access to doula services, particularly for low-income women. Osorio said she charges $800 for her services because she serves low-income communities, but she still encounters many women who can’t afford that amount.
Taking away the financial barrier and allowing women to have an advocate by their side throughout their pregnancy could help save lives and prevent pregnancy-related complications, she said.
“We are kind of like a walking resource center,” she said of doulas. “You want to have established connections and relationships with the providers, and if the patient can’t [do that], at least the doula can.”
Osorio said she has helped more than 25 women through their pregnancies since becoming a doula. But she is always scared for her black clients, given the dismal statistics around black maternal health.
Recently, Osorio said, she asked one of her clients why she’d hired Osorio as her doula.
The client replied, “I don’t want to die.”
“I’ll do everything I can.”