For Jo Palmer, her daughter’s birth was a miracle she never thought she’d live to see.
She almost didn’t.
Palmer suffers from mixed-connective tissue syndrome as well as an auto-immune disorder. She had been told she would never get pregnant, let alone give birth.
So she chose a hospital familiar with that history, believing she could trust them with her life and that of her unborn child. “I didn’t want to be in a position where I was explaining my medical history if something went wrong,” she said.
Palmer is a health policy analyst with a bachelor’s degree from Duke University and a Master’s in Healthcare Administration from the University of Maryland. She had done pre-pregnancy counseling, seen a reproductive endocrinologist and set up a pain management plan with her doctor. “I did everything right. I did what I was supposed to do and thought I could trust this place that at times, had saved my life.”
That trust, she said, was shattered.
After delivery by caesarean section, Palmer felt what she described as “excruciating pain” that made it impossible for her to even touch her newborn baby. Her complaints, she said, were not taken seriously, nor did anyone review her chart to note that her medical history has resulted in a high tolerance for pain medication. The medical team hesitated to implement the pain control plan Palmer and her doctor had put in place.
The day after giving birth, Palmer noticed her lower abdomen was distended. When she pointed it out to the nurse, Palmer said, her concern was dismissed. In the middle of the night, Palmer reported shoulder pain. She knew this was a flag for preeclampsia. Physicians determined she was suffering from internal bleeding.
Palmer was rushed into the operating room. Finding the medical team had not reviewed her medical history, she told her husband, Raman Santra (the blogger Barred in DC), that she loved him and gave him parting advice on how to raise their daughter, telling him he was born to be a girl dad.
As a result of her training and profession, Palmer knew the risks. “I know that this is happening to people that look like me —that we’re being overlooked, we’re being neglected, we’re being brushed aside.”
In the operating room, Palmer confronted the team and gave them her medical history. Before they gave her anesthesia, she said, “I looked them in the eye and I said, You are not going to kill another Black mother today. I am going home with my baby. Please do not kill me.”
Now the mother of a daughter who is nearly two years old, Palmer knows she is lucky. She also knows how many Black mothers delivering in the District are not.
The US national maternal mortality rate for 2014-18 was 20.7 per 100,000 live births; for Black birthing people in D.C., the rate was 70.9. While Black people accounted for half the births in the District, they suffered 90 percent of birth-related deaths, according to a report from the District’s Maternal Mortality Review Committee (MMRC). 70 percent of those deaths were of residents of Wards 7 and 8.
“When you see those terrible statistics, it just doesn’t make sense,” Palmer said. “What’s the problem here?”
Part of the problem is structural inequity created by racism.
A 2016 study published by he National Academy of Sciences found that there is racial bias in pain perception that affects treatment. Repeated studies have shown that Black women frequently experience disrespect, procedures without consent, rough handling, and dismissiveness toward pain from doctors.
Factors such as socioeconomic status and education are often cited in explanations for this disparity, said Marcelle. However, until she started researching her thesis in midwifery in 2006, she said she shared the general belief that the disparities between birthing people of different races were because of socioeconomic reasons or even plain bad choices. But her work changed her mind, she said.
“It really comes down to systemic racism and institutionalized racism and how those factors are playing into our maternity care system,” Marcelle said. She notes that several academic studies have looked at the contributing factors and found that race is the major factor uniting people suffering pregnancy-related deaths. “When we try to adjust for socio-economic physical lifestyle, it doesn’t change. It doesn’t improve any of the outcomes.”
Marcelle points to Serena Williams and Beyonce, who she notes, “have all the money, all the husband, all the things, all the body —and are still having challenges with growing their family.”
Of course, socioeconomics indirectly affect maternal health outcomes through housing insecurity, lack of mental health resources, and certain health conditions. Women of color nationally and in DC are disproportionately more likely to experience preexisting health conditions, lower socioeconomic status and discrimination, all of which negatively affect maternal health outcomes.
In the District, a history of local and federal policies that structurally disenfranchised people of color has created a racially segregated city, where certain areas have less access to opportunity than others. For residents of the majority-Black wards 7 and 8, that includes access to healthy food, hospital and health services.
There is no hospital east of South Capitol Street or east of the Anacostia River. The obstetrics ward at United Medical Center was closed by the District Department of Health for repeated violation in August 2020 and never reopened.
After years of work, the new Cedar Hill Regional Medical Center is expected to open in 2024 at the St. Elizabeth East Campus. Services will include newborn delivery with a neonatal intensive care unit, pediatric care and women’s health services as well as adult and children’s emergency services.
But, At-Large Councilmember Christina Henderson (I), said, with the closure of DC General, Providence and United Medical Hospitals over the past 22 years, “we’re still down hospitals from an infrastructure standpoint —and yet there are lots of babies being born in the District.”
For Henderson, the struggle is personal. When she gave birth to her first child, she got a front row seat on the limited infrastructure the District has available for birthing people. In active labor, she was sent away from no less than two hospitals just trying to be admitted for care.
In January 2021, she introduced the Maternal Health Resources and Access Act of 2021, her first piece of legislation. The bill includes funding for ride share trips so that women could get to and from appointments. Beginning in October 2022 DC Council directed $4.14 million to the Department of Health Care Finance (DHCF) to provide for a state plan amendment authorizing reimbursement of doula services under Medicaid. It also includes a provision to fund a feasibility study for a birthing center to be located east of the river.
Henderson knows it’s not a comprehensive bill, but it is a start. ”The goal is to address the low hanging fruit,” Henderson said. “This is a crisis and it’s 100 percent preventable.”
According to the 2018 DC Perinatal Health and Infant Mortality Report, approximately half of black women (49%) and more than 1 in 3 Hispanic women (35%) are not getting into prenatal care until their 2nd or 3rd trimester or not receiving any care at all. As the report notes, “Delayed prenatal care is associated with poorer health outcomes for both mothers and infants, including preterm birth, low birthweight and infant mortality.”
Henderson said when women were asked why they sought care so late, “for lots of them it was just transportation.” With many ObGyn clinics on the west side of the river, it could take a woman two busses and one train just to get to the appointment.
Mothers in Ward 8 also told the DC Primary Care Association (DCPCA) that they had problems coordinating work schedules and childcare. One mom had a broken foot while she was pregnant and so she missed appointments because getting to the doctor’s office was too difficult with her cast.
Henderson’s bill builds on recent legislation moved by DC Council, including a 2018 bill introduced by Charles Allen (Ward 6-D) that established the MMRC and 2019 legislation that extended Medicaid coverage for a year after birth to cover post partum care. Previously, birthing people were only accorded 60 days. In 2019 legislation was passed to create a perinatal mental health task force to focus on strategies and practices in DC. That task force was funded in 2022.
In 2018, Councilmember Vincent Gray (Ward 7-D), Chair of the Committee on Health focused on maternal health especially for African American mothers by introducing Birth to Three legislation which provided care for mothers from prenatal care providers, lactation specialists, mental and behavioral support, early learning requirements and provisions.
A Turn to Doulas
With access to care limited for expectant parents, midwives and doulas have increasingly stepped into the breech, filling the need for physical and emotional support, information and advocacy as parents prepare to deliver babies.
Doula and midwifery have a long history in the Black community. Generations of midwives were respected members of the community who, in turn, brought generations of babies into the world.
Local nonprofits Mamatoto Village, Community of Hope, and Healthy Babies Project provide holistic, community-based maternal health services in Wards 7 and 8 with providers that look like their patients and are part of the neighborhoods they serve.
Doulas support the person giving birth throughout all their decisions. They do not provide medical procedures, but they do ensure that the birthing person’s needs are met, giving them a sense of control, comfort and confidence. Midwives can provide medical care and prescribe painkillers, but tend to focus on low-intervention and holistic care.
And studies show that both make a real difference, demonstrating both emotional and medical benefits. Doulas are linked to a 35 percent decrease in negative birth experiences, lowered use in pain medication, lower pre-term birth and increase in prenatal care. When doulas worked with clients prenatally, there was a decrease in the length labor, an increase in breast feeding success and also reductions in caesarian section.
Cultural Competency and Community
The cultural competency is critical, said Ebony Marcelle, Director of Midwifery at the Community of Hope Family Health and Birth Center and a member of the MMRC. Many of those delivering, particularly those on Medicaid, report that they are worried they will be judged or that the provider won’t understand their situation or decisions, creating an uncomfortable environment for the patient.
Patients may also feel uncomfortable sharing information with providers. Dr. Chinita Richardson, a reverend and doula, told the Committee on Health hearing that one of her clients described how the father has had heart issues since he was 3. The mother has not told the doctor about this history despite being 32 weeks pregnant, Richardson said. “So our advocacy is very, very important.”
“If you go places and feel like people are judging you and are not nice to you, you aren’t going to go,” Community of Hope’s Marcelle said.
District legislation passed in 2016 requires healthcare professionals to require cultural competency training around LGBTQ issues, but not around racial bias. At least four states have adopted politics since 2019 requiring health care professionals to take implicit bias training prior to licensing or credential renewal; many other states have introduced similar bills.
Community is key. Two years after giving birth, Palmer has sought therapy. She has incorporated her experience into her work, notably into a white paper on health disparities in the United States. Her greatest comfort has come from the community of mothers she plugged into in the months after giving birth. She calls them her “tribe,” women with infants who empathized with the story, actively check in on her.
“When they see me, I don’t feel like I have to be strong,” she said. “If I need to talk about it, I have a few women who let me lean on them.”
It is still emotional for Palmer to share her story, two years later. But she wants to draw attention to the problems before another mother faces them. “I feel I was a real-time, real-world training exercise for the MFM [maternal fetal medicaine], labor and delivery team, and the other specialists who were consulted on my case,” she said.
She said she hopes her story can shine a light to how those in positions of authority and influence need to be aware of and check their biases. “It seems hard to admit these things to ourselves, but structural racism can’t be dismantled until we can all recognize our part in upholding that system.”
Marcelle agrees. “It’s been a hard pill for a lot of folks to swallow, but it’s truth its reality. And until we acknowledge it, until we address it, we’re not going to be able change outcomes.”