“I had a small breakdown the first time my midwife texted to let me know our next session would be virtual,” says Leslie Lissaint, who is 22 weeks pregnant. She and her husband are expecting their first child, but like many, COVID-19 has drastically shifted their plans.
She still intends to deliver at home—a growing trend among black women—hoping to avoid racial discrimination and the heightened risk of illness that accompanies COVID-19. Lissaint wants to be accompanied by a midwife, a medical professional with the time to give her attentive personalized care, answer questions, and advocate for her if needed.
Lissaint knows that even pre-coronavirus, black women are three to four times more likely to die due to pregnancy-related causes than white women and often report experiencing mistreatment during care. She’s found online advocacy groups and storytelling opportunities, like Black Mamas Matter Alliance and Natal—a podcast docuseries about giving birth while black—that provide community, knowledge, and support when so much about birth for black women is unpredictable.
“It provides peace of mind that black women can give birth during a pandemic, that we can collectively trust our bodies to birth a healthy baby,” Lissaint says. “I have a few friends who are currently pregnant, and we are in a group chat together, sharing stories and asking questions.”
Only recently has research caught up to black women’s firsthand accounts of medical mistreatment and complications. Now, the black community’s disproportionate risk for COVID-19 contraction and hospitalization has elevated these concerns. The parallels between denying black women lifesaving postpartum care and withholding the larger black community’s access to vital testing and treatment for COVID-19 indicate the extent of racial inequality in healthcare. But there’s reason to believe that technology platforms and tools aiming to support people during pregnancy might help reduce the risk for black women birthing during a pandemic—only if they’re built with black women’s specific needs in mind.
A young mother’s premonition
The pandemic is already increasing the risk for black women during childbirth.
For instance, Amber Rose Issacs died on April 21st after an emergency C-section due to being diagnosed with HELLP syndrome, an urgent pregnancy complication that affects the blood and liver—just four days after tweeting about the incompetence of the medical team at her local Bronx hospital.
Can’t wait to write a tell all about my experience during my last two trimesters dealing with incompetent doctors at Montefiore
— ✨ (@Radieux_Rose) April 17, 2020
Issacs had been seeking assistance for months—her dropping platelet levels were a cause of concern—but coronavirus-related measures shifted her check-ups to virtual video calls. By the time care providers decided to act, it was too late. Tragically, she’d expressed fears that she wouldn’t survive delivery to her partner. She never had the chance to meet her newborn son, Elias.
Please continue to show your love and support for our beloved Amber. Please do not share false narratives. Just know she was treated unfairly and that mistake cost her life. She left behind a loving family, friends & our son Elias. I am her point of contact. #JusticeForAmber
— Bruce McIntyre III (@bizmacthe3rd) April 24, 2020
Issacs is the latest to suffer from the risk of maternal death that black women face, and her story confirms fears that coronavirus will exacerbate an already tricky birthing climate for black women. Dr. Jaleen Sims, an ob-gyn in Jackson, Mississippi, notes that despite efforts to streamline care during COVID-19, we can’t cut corners in labor and delivery. High-risk patients may not be able to rely solely on telehealth.
Dr. Jaleen Sims
. . . deaths related to these issues can be prevented.”
“The top causes of death [from giving birth] include heart conditions, blood-clotting events, high blood pressure in pregnancy, and excessive blood loss with delivery. Each of these conditions requires patients be seen in person and evaluated in a timely fashion. We must keep this in mind and really at the forefront of our minds because deaths related to these issues can be prevented,” she says.
COVID-19 may even worsen birth-related complications. Sims points out that there are the higher rates of preeclampsia—a serious high blood pressure condition that can occur after 20 weeks and after delivery—in COVID-19 patients.
A Yelp for bias in maternity care
According to Kimberly Seals Allers, an international maternal and infant health strategist and speaker, technology has the potential to improve conditions for black birthing people—a term that includes all capable of birth regardless of gender identity—in normal times as well as during a pandemic.
That’s why Seals Allers started building the Irth app in 2018, which collects and shares hospital and physician reviews filtered by identity. Users enter a few details about themselves, and then are able to search for reviews from people with the same racial identity, gender, religion, and income level as them. The app, which Seals Allers describes as “a Yelp for experiences of bias and discrimination in maternity care,” seeks to combat the impact of health providers’ racial bias on black mothers’ birthing experiences.
The app was partially inspired by Seals Allers’s own experience of having walked away with birth trauma from a hospital that came highly recommended by her non-black friends. She wanted to expose how quality of care changes based on the identities one holds while pregnant. “At that time, I was not yet married, and because I was still a graduate student, I was on student insurance,” she says. “And I was treated like an unwed black woman with basic insurance.” The more she traveled as a maternal and infant health advocate, the more she realized her story was painfully common among black women.
Seals Allers wants people to understand that while the act of giving birth is a biological one, the experience of giving birth is in part psychological and depends on how you’re treated throughout the process. She believes that better documentation of this experience will help improve treatment during pregnancy-related care and hopefully reduce deaths.
Irth is still in the prototype stage (you can try out a demo on Github), and the beta app will be finished this summer. Seals Allers plans to test it in Sacramento, Detroit, and New York City before fully launching the app in October 2020.
Seals Allers hopes Irth will give black women a stronger voice in their reproductive care, enable non-black women to learn about and hopefully withdraw support from facilities with a history of discrimination, and make it easier to document the specific forms of mistreatment black women experience during care.
“Irth is Birth, but we dropped the B for bias, so when bias is no longer a factor in birth experiences, then Irth will be the reality,” she explains. Seals Allers notes that while Irth was designed for black women and birthing people, it is a tool for all marginalized groups.
Now, the Irth app team has ramped up their efforts online during COVID-19. Seals Allers is actively looking for survey respondents to better understand the impact of the pandemic on the treatment women receive.
“We already know that COVID-19 is disproportionately hitting black and Latino communities in cases and mortality rates. We need to know how birthing experiences [are] also impacted,” says Seals Allers. “There is growing research on the numbers of preterm births, miscarriages, C-sections, and all the ways the act of birth is being impacted.”
The stress of pandemic pregnancy
In the face of COVID-19, many black women are finding comfort in virtual prenatal care and mental healthcare. For instance, Lissaint attends check-ins with both her provider and virtual group therapy. The sense of community that online groups and forums bring, especially when paired with resources like the Irth app, provides them with the tools to navigate the challenge of birthing during both a pandemic and a national mortality crisis.
One such resource is The Renée, which hosts informal, hackathon-like opportunities called “Jam Sessions” where women of color from across the country share birth stories and brainstorm solutions to make their pregnancy and birth experiences better. Eventually, The Renée’s founder, Whitney Robinson, hopes to compile these insights into an online resource.
Robinson is well acquainted with the systemic factors that limit black birthers’ access to quality healthcare facilities and providers, including how prolonged exposure to racism-related stress deteriorates black people’s bodies on a cellular level—a process referred to as “weathering.”
On April 19, Robinson held a virtual jam session on “Anti-Weathering” as a direct response to COVID-19, hoping to provide women of color with the opportunity to prioritize themselves despite the demands of the pandemic. During the inaugural session, participants prepared a custom recipe of sweet potato flatbread with caramelized onion and collard pesto that was developed by local preservationist Gabrielle Etienne. Robinson arranged the delivery of fresh ingredients from the black farmers of Tall Grass Food Box for each of the session’s five participants. They shared a meal while sharing stories. Another anti-weathering jam session on May 28th will feature politician Stacey Abrams.
Robinson gave birth at 25 weeks, days before her state shut down, and her life has been a whirlwind ever since. Between the stress of losing her job due to COVID-related mass layoffs, regular NICU visits, and trying to be present for her husband and their other three children, she has limited time to focus on her needs postpartum. “My emotions are complex, a balancing act between remaining present in my relationships and bringing my A game to the NICU to advocate for my premature infant,” Robinson says.
Her experience has been a forceful reminder of how easy it is for the demands of the world to prevent women from taking care of themselves—especially for those who were already struggling to navigate a broken healthcare system.
Robinson wants to change that. Now she asks: “Instead of being weathered by the circumstances around us, how might we nourish ourselves, virtually, while plotting our victories in maternal health, collectively?”
Tech is not a cure-all
Ultimately, technology’s ability to connect black women with support is limited. Sometimes, you need an in-person advocate. That’s where doulas, or birth support professionals, step in. The World Health Organization (WHO) recommends them as a resource to prevent pregnancy mistreatment and death related to pregnancy. But with in-person services on hold due to COVID-19, doulas have been forced to perform their jobs remotely.
How might we nourish ourselves, virtually, while plotting our victories in maternal health, collectively?”
For instance, Brooklyn-based Ancient Song Doula Services was forced to shutter its physical location. Instead, the company is offering online educational opportunities so doulas have the training to support clients virtually. Founder and CEO Chanel L. Porchia-Albert is also hosting virtual doula training for nurses, so they are prepared if a certified doula isn’t able to be in the same room.
While resources like Ancient Song’s virtual trainings and the Irth app have undeniable potential to reduce disparities, these tools are not a cure-all. Even telehealth isn’t a blanket solution. Though Sims, the Mississippi-based ob-gyn, uses teleservices for certain appointments, she says that pregnancy-related visits—especially third trimester and postpartum—should be regarded as essential. Preferably, they should be completed in person because care can quickly become a matter of life or death.
Technology that is tailored to black women’s needs offers a chance to challenge the idea that black women’s reproductive stories must come from a place of trauma—even during a pandemic. Seals Allers believes that when paired with research, giving black women’s perspectives a platform can change their relationship to the medical-industrial complex that has exploited, excluded, or silenced them.
The COVID-19 pandemic is already providing an opportunity to rethink how healthcare happens in the United States. Perhaps it is also the perfect time to reimagine what it looks like to give birth while black.
A. Rochaun Meadows-Fernandez is an award-winning writer, speaker, and activist working to amplify black women’s voices in the mainstream dialogue, especially within conversations on health and parenting. She is also the founder of the #FreeBlackMotherhood Movement.