On January 11, 2023, April Valentine went to the Centinela hospital in Los Angeles, CA to give birth. She never made it out. The baby girl survived, but Valentine didn’t, nor did she get to meet her daughter. In an account shared widely on social media, before her death, Valentine and her boyfriend complained for hours that she could not feel her legs, and were told the nurses could not call the doctors, “because they would get upset.”
Valentine is one of the 700 women who die annually in the United States during pregnancy, labor, or the postpartum year. Black women are three times as likely as white women to die from a pregnancy-related complication. “The most educated black woman still has a lesser chance of survival during labor than the least educated white woman,” said Patience Riley, communications manager of the Perinatal Mental Health Alliance for People of Color, citing the CDC data. According to the CDC, recognizing urgent maternal warning signs and responding quickly can prevent many pregnancy-related deaths. But for many Black women – their cries for help, like Valentine’s, aren’t always believed.
Improving the experience and outcomes from childbirth and pregnancy is the focus of the Irth App (The name comes from “Birth” without the “B” for Bias). The award-winning app allows women of color to share the good and bad of their prenatal, birthing, postpartum and pediatric experiences, including the names and locations of where they received care and with details of how they were treated. Irth’s data shows that the number one complaint women of color have in their birthing experience is that their “request for help was ignored or refused,” just as Valentine’s was. The second complaint is that pain levels were dismissed, followed by violations of physical privacy, comments based on racial stereotypes, and condescending tone or rude comments from clinicians – such as referring to a partner as a “Mr. Baby Daddy” being asked if they are enrolled in WIC, or pressure to have conversations about contraception while still in labor.
“Black maternal health has been put on the backburner for so long, and what has taken so long for this to become a more talked-about issue?” says Kimberly Seals Allers, the founder of Irth. “This is all about narrative change in the Black maternal health space. Much better to learn from the living than to try and solve this problem from the grave,” Allers said.
Allers worked for decades as a journalist, at Fortune, Essence, New York Post and The Times of London, before shifting to advocacy. She wanted to dig deeper into the health disparities Black and Brown women faced surrounding birth and child raising. Her book, The Big Letdown: How Medicine, Big Business, and Feminism Undermine Breastfeeding, dispelled a number of myths about breastfeeding in Black and brown communities, and the negative impacts the lack of paid family leave has on baby feeding– particularly for the low wage workers and people of color.
But within her research on breastfeeding, Allers kept encountering stories of birth traumas. “Too many people were asking, ‘Do I need to do a will before I go into labor?’ ‘What happens to my child if I die?’ Really scary stuff.”
Allers found that there was little being done to empower women with information on what they could do when faced with such a situation. Irth, which now has more than 10,000 users and reviews from 48 states, exists for all women of color to share their birthing experience. Irth is a grant funded project of Narrative Nation, of which Allers is the executive director, and is the only Black woman led media and technology nonprofit focused on racial disparities in maternal and infant health.
Charline Ogbeni is a birth doula and lactation consultant who used Irth to record her hospital experience after giving birth to her daughter in March 2020. Ogbeni found that switching to a Black doctor improved her overall experience. For years she had complained about heavy periods and debilitating cramps, and felt her providers hadn’t addressed this in the 15 years she’d been at the practice. In her first postpartum visit with her new doctor, Ogbeni was asked about her symptoms. “She educated me about having PCOS, and this was the first time I had ever heard those words,” said Ogbeni. Ogbeni now serves as an ambassador for the Irth app, encouraging women to take the 15 minutes to fill it out after their birthing experience and search the app before choosing a provider or hospital.
Kaleigh Zschuschner is a Brooklyn-based birth doula who downloads Irth for all of her clients of color, and walks them through how to use it. When she accompanies her clients to their births, she leaves detailed reviews on the way medical staff treat the patient and respond to concerns. She had a recent experience where medical staff were dismissive of a Black woman giving birth. “I’d been there with White and Asian birthers, and it was different this time: the bedside manner was not as pleasant, they were rushing the process, not changing her bedding as often.” She took in all the details, including names, and went to Irth “to leave a full throttle review.”
“Black women, you have to treat your doctor like your hairdresser. The first time they mess up, it’s time to start looking for someone else,” said Allers. There are occasions when reviewers name names, and if a provider’s name comes up with frequency, Irth’s team will alert the hospital as a liability and possible HR issue.
But for some women, switching providers may not be an option – “A lot of providers won’t take new patients past a certain number of [gestational] weeks,” said Desiree Israel, Co-founder of the Perinatal Mental Health Alliance for People of Color. “It’s a systems issue. And it requires the kind of trainings that infiltrate hospitals.” Israel said that several of her clients were not asked to fill out the Edinburgh Postnatal Depression Scale (EPDS), which screens for postpartum mood disorders, on discharge, leading to another miss in catching the perinatal mental health issues that can arise after giving birth. And those that do fill it out may not feel they can be fully honest, due to that lack of trust or fear of being vilified, or seen as an unfit parent.
When hospitals and health centers reach out to Irth for data, Allers will share it with the caveat that the hospital begins a partnership for an improvement plan centered around identifying patterns and reducing negative practice behaviors. Pilot programs are underway for hospitals in Detroit, Philadelphia, Los Angeles and New York City, and Irth is in partnership discussions with a Louisiana hospital collaborative. Black birthing people with positive and joyful birth experiences are featured on the Birthright podcast, now in its second season. This February, Allers will launch “Expecting Joy,” an instructional webinar for healthcare professionals based on qualitative researchers’ analysis of positive Black birth experiences to look for themes, patterns and lessons.
Technological solutions can’t fix the entirety of racial disparities in health, but it can provide Black and brown women a greater voice in the process, explains Jallicia Jolly, an Assistant Professor and research scientist at Yale University School of Public Health, who is also involved with Birth Equity and Justice Massachusetts (BEJMA). “It brings systems of accountability to reproductive health care, while honoring the experiences of Black and brown people.” The real time capabilities of technology allow for active, immediate and continuous feedback from Black and brown people in their communities, rather than having to wait for an extreme crisis, or a maternal mortality, like April Valentine’s.
Other aspects need to be involved to improve the racial disparities of health care, including looking into the social determinants of health, and investing in more infrastructure to support vulnerable and low-income communities. “Black and brown women have a role to play as leaders in this reproductive justice movement. Transparency and accountability in administering and evaluating tailored care before a crises or death occurs are so crucial to equity,” said Jolly. “And this is how you get equity to be an action.
Rebecca Gale is a writer with the Better Life Lab at New America.
