Thirty weeks into my first pregnancy, I developed some concerning abdominal pain. The clinicians in labor and delivery triage examined me — they took a urine sample, measured my blood pressure, and made sure I wasn’t having contractions before sending me home. Unfortunately I was still in pain, and the pain slowly progressed.
A few days later, I received a call from the OB-GYN supervising the triage clinic to notify me that my urine had been cultured and grown some bacteria. The doctor asked me whether I had any symptoms of a urinary tract infection. I told her that I didn’t, but that I still felt unusual discomfort and tightness in my belly. “Well,” she replied, “I’m not inclined to treat you.”
As a first-time mother, I was unfamiliar with the aches and pains of pregnancy, so I trusted her advice. I had no reason not to. That is, until I was hospitalized for preterm labor later that week.
Asymptomatic bacteriuria is what doctors call a urinary tract infection without symptoms. As I learned the hard way, left untreated, this infection can cause a number of obstetric complications including preterm labor. For this reason, antibiotic treatment is the standard of care. Yet I was denied this treatment. Confined to a hospital bed and hooked up to an IV with medications to stop my contractions, all I could think about was this doctor’s “inclination.” And the fact that I was Black and she was white. Racial bias is the root cause of the Black maternal and infant mortality crisis, and I feared that I would be the latest victim of its violence.
Even though the medications stopped the preterm labor and I was able to carry my baby to term, the damage had been done and trust had been broken. To heal, I sought restorative justice — a productive way to hold this OB-GYN accountable for her inclinations. But as a patient, I was hesitant to report her deviation from the standard of care and make anyone defensive in response to my bias concerns, because difficult patients receive worse care.
With my well-being and pregnancy at stake, I couldn’t risk being Black and difficult. Or worse, like Susan Moore, the physician who raised the alarm on Facebook about substandard care she received for Covid-19 in December — Black, “intimidating,” and dead. Throughout the remainder of my pregnancy, I silently worried: Who is going to protect me?
It’s critically important that Black and brown patients “inform and protect each other,” explained Kimberly Seals Allers, a former journalist and an advocate for equity in maternity care. She recently launched a Yelp-like app that does just that. Black and brown patients can write reviews and rate the care provided by their OB-GYNs, pediatricians, and hospitals — awarding one to five stars — and see how they’re rated by others. The platform’s name, Irth, is a clarion call: “birth,” but without the “b” for bias.
As a journalist, Allers reported on the state of pregnancy and childbirth in America. But after a traumatic birth experience of her own, when she realized that Black and white women do not get the same care, Allers began advocating for birthing equity, and she sees the app as a way to reach that goal.
There is power in aggregate data highlighting what Black and brown folks are saying about a specific doctor or hospital system, Allers told me: “If our community doesn’t vouch for you, it’s a problem.”
The app also asks users to say whether they believe their race impacted their care. Irth highlights reviews submitted by doulas and midwives and flags hospitals where infant and maternal deaths have been reported in the past two years.
Since its launch in late February, Irth has amassed nearly 5,000 users and generated about 3,000 reviews. Users are verified, to make sure they are real people, and reviews are moderated to ensure they meet community standards.
Despite these measures, some hospitals have lobbied against the app, Allers explained in an interview on the “Evidence Based Birth” podcast. It’s an action that suggests they are not interested in really listening to the experiences of their patients. The community-centered platform doesn’t leave any room for doctors or hospitals to dismiss these patient experiences, something that happens far too frequently offline.
As a doctor, I have to admit, unopposed reviews like those on Irth make me uncomfortable, because I know that some patients are hard to please. But as a Black woman, this professional discomfort I feel pales in comparison to actual dangers I and many others have experienced due to racism. Even as a physician, I was more likely to lose my baby than a white woman without a high school diploma.
While I was being treated in the hospital, a pediatric specialist tried to prepare me for the care my baby would need in the neonatal intensive care unit if she were to arrive early. As she listed all the ways my baby’s body could fail, my body filled with dread. The specter of Black maternal and infant mortality was knocking at my door. During my second pregnancy, I made it my mission to evade this wraith by connecting with a Black OB-GYN.
But Allers recognizes that the onus isn’t on Black and brown patients on their own to fix the systemic racism they are subjected to. That’s why she and her team aim to harness the collective power of patient voices to push for change. Taken together, silent struggles like mine can become an impetus for action.
These days it’s common for health care systems to put out statements of antiracism and require implicit-bias training for employees. No one, however, is tracking the impact on the people these trainings are supposed to help, said Allers. “You can’t monitor what you can’t measure,” she said, adding that she hopes the Irth platform can fill that vital gap and hold hospitals accountable.
Anti-bias work requires more than just checking boxes, explained Allers. Hospitals need to understand the experience of care their most vulnerable patients receive.
In her community advocacy work, Allers grew tired of attending the funerals of Black mothers who died of pregnancy-related complications, where she heard stories of health care gone wrong that echoed the themes of her own traumatic birth experience and my disappointing care. For both of us, our pain and concerns were ignored.
During her first pregnancy, Allers relied on the glowing hospital recommendations she received from her white friends. But as a Black patient, things didn’t work out for her the same way.
“I had a C-section that I couldn’t explain, I probably still can’t explain it. I specifically said I was breastfeeding. My baby was given an infant formula against my wishes. I literally remember crying just to have my baby with me and nobody would respect my wishes for my baby to be with me,” she recounted in the “Evidence Based Birth” interview.
This trauma made her white friends wonder whether she had gone to the same place. She wants to help hospitals see those red flag behaviors — inclinations — that lead to higher rates of death for people who look like me, Allers, and our babies.
Irth shares publicly where communities of color are receiving good care and where they are not. Allers also hopes to share best practices from doctors and hospitals that are highly rated. Her ultimate vision is to create an “Irth seal of approval,” to make maternity care less about trial and fatal error and more about what’s tried and true.
I often think about Black liberation, and what it would feel like to breathe easy, and seek care without worrying that it might kill you and your baby. I’m hopeful that Irth brings us one step closer to that mecca.