AUSTIN (KXAN) — Patrice Lott felt her appointments were rushed whenever she went in for her prenatal visits. She had deliberately chosen a doctor of color, following a Facebook group recommendation and her own research, and so this was not the experience she was expecting.

“They let me know my appointments coincided with when she got called into the hospital, so we switched it up,” Lott said. “After that, I definitely felt taken care of from top to bottom.”

Black mothers continue to experience health disparities and inequities during and after pregnancy in Texas and across the U.S. To raise awareness on the subject, Black Mamas Matter Alliance created “Black Maternal Health Week or BMHW. The theme for 2023 is, “Our Bodies Belong to Us: Restoring Black Anatomy & Joy.”

Established in 2018, BMHW (April 11 – 17) is a week of awareness, activism and community building intended to deepen the national conversation about Black maternal health in the U.S., center the voices of Black mothers, women, families and stakeholders, and enhance community organizing on Black maternal health.

Also in 2018 in Austin, a maternal health research project quickly evolved into a community organization after Dr. Michelle Roundtree and others who started Black Mamas ATX, or BMATX, realized the need of the women and families they were interacting with.

“Black people in the community are experiencing health disparities in several areas. Maternal health is just one,” BMATX Executive Director Kelenne Blake-Fallon said. “It’s systemic, and the biggest challenge has been that we’ve not been able to push the system to change in a way that allows Black women, Black mothers and Black communities to thrive.”

Kelenne Blake-Fallon is the Executive Director of Black Mamas ATX. She is a former professor at Huston-Tillotson University and a current doctoral student of Public Health at Johns Hopkins University, concentrating in Health Equity and Social Justice. (KXAN Photo/Eniola Longe)

BMATX serves Bastrop, Caldwell, Hays, Travis and Williamson counties providing free doula support, breastfeeding education and mental health support to their clients. Blake-Fallon said she considers this survival work.

“But to really create change, we need that structural work,” she said. “We need to change the systems, we need the health care providers to consider community organizations as partners in the care of their patients, not as threats, not as frustrations or barriers.”

BMATX doulas work with moms from the moment they request a doula and up to one year postpartum providing education, practicing comfort measures, designing a birth and postpartum plan, as well as advocating for the moms when necessary.

Sometime during her pregnancy, Lott started to feel like something was off and complained to her doctor. She seemed to be drained all the time even though she was eating clean. It wasn’t until she ended up in the emergency room she discovered she had a bladder infection and then two weeks later, at a doctor’s appointment, she found out she also had gestational diabetes.

Patrice Lott moved from Minnesota to Texas just before the pandemic. She got pregnant with her daughter, Camilla Joy, and had a difficult time adjusting to a new city especially while being pregnant. (KXAN Photo/Eniola Longe)

“We know something’s not right but we don’t know what it is because we’re not doctors,” Lott said. “We didn’t go to school in order to diagnose ourselves or other people. So, we are allowing that team of people to take care of us and the care is not there.”

Texas Mortality and Morbidity Review Committee

In 2013, the Texas Maternal Mortality and Morbidity Review Committee, or MMMRC, was established to review maternal deaths and release biennial reports on their findings as well as make recommendations on steps to take to actively fight against the high severe maternal mortality and morbidity rate.

The figure above shows a rising trend in general for all women. Black women, represented with the red line continue to experience the worst morbidity rate in Texas (Courtesy MMMRC Joint Biennial Report)

A preliminary review of 2019 Texas data revealed 59 pregnancy-related deaths – those caused directly or indirectly by the pregnancy – from a larger pool of 140 deaths identified as pregnancy-associated – those occurring during a pregnancy and up to one year afterward. The committee determined 90% of the deaths were preventable.

The 2019 numbers also show that non-Hispanic Black women die at twice the rate of non-Hispanic white women and more than four times the rate of Hispanic women. This is a persisting trend since 2013, when maternal mortality data became available.

Racial/Ethnic Severe Maternal Mortality Disparities

In comparison to all other races and ethnicities, Black women consistently experience the greatest risk for maternal death. This trend persists across all levels of socioeconomic status, including women who were married, were at the highest education level, and those women who had private health insurance at the time of their delivery.

High Black maternal mortality and morbidity is not only a problem in Texas, it’s prevalent across the U.S. The U.S. is the only developed country where the maternal death rate continues to rise. According to 2021 national data from the CDC the average mortality rate per 100,000 live births is 32.9. The same data shows the average rate per 100,000 deaths for Black women in the U.S. is 69.9. The Netherlands has the lowest rate per 100,000 live births at 1.2. With a further decrease seen despite the pandemic.

The 2021 American Rescue Plan Act, a direct response to the pandemic, offered a possible solution to a major problem for Texan mothers especially: insurance. As of 2019, Texas was one of the states with the highest number of uninsured women of childbearing age.

With a possible extension from two months to 12 months postpartum coverage under the Act, Texas’ proposal to extend coverage to six months postpartum is currently awaiting federal approval from the Centers for Medicare and Medicaid Service. The latest Kaiser Family Foundation report shows 32 states including DC have adopted a 12-month postpartum coverage extension with six states planning on implementing a full extension and three states including Texas with limited coverage extension proposed.

“As a doula and student midwife, I have witnessed nurses or OB-GYNs not paying attention to Black moms while they’re in labor or ignoring their complaints of what they’re experiencing in their prenatal visits,” a doula with Giving Austin Labor Support, or GALS, Dominique Adeniyi said. “Though there is more than one cause for the mortality rate when it comes to Black women, not being heard or not feeling heard or not being taken seriously are important factors.”

Adeniyi came into this line of work to contribute to the solution after experiencing a near-death situation. During labor, she started experiencing some pain, which her midwife brushed off as a stomach virus. After she said she was ignored for almost two days, Adeniyi left the birthing center she originally planned to give birth at to go to a hospital. It was there she was told her liver was shutting down and that she had developed HELLP syndrome, a life-threatening condition.

“I actually had a great experience at the hospital,” Adeniyi said. “Which is really crazy because you would think that at a birthing center, you’ll get this holistic, one on one, tailored experience, but I didn’t. I got that at the hospital where they took it seriously.”

Training and working as a doula is also an avenue for Adeniyi to work through the postpartum depression she developed after the traumatic experience.

“Helping moms who are in need gives you this sense of fulfillment,” she said. “So although I’m in therapy and still working through the depression, being able to be out in the streets and help people have healthy, positive birth experiences has definitely helped.”

Current Steps

In Austin, the Maternal Infant Outreach Program, or MIOP, an initiative of Austin Public Health, has been providing peer support and advocacy to Austin’s Black and African American women since 2013. MIOP works with these mothers for up to one year postpartum in efforts to address and eliminate the stark racial disparities in maternal and infant mortality. The program has served almost 800 moms since inception.

“This is a direct response to a direct problem, which is the high infant and maternal mortality rate seen in the African American Black diaspora community,” MIOP supervisor Estephanie Olivares said.

Moms are matched with a case worker who makes home visits and is able to connect the mother to any available service she may need.

“Our community health workers (CHW) are the secret sauce to connecting our moms here in Austin, in Travis County, to social services,” Olivares said. “Each CHW has a caseload of moms, and we’re not at full capacity yet.”

MIOP measures success by collecting data on the following metrics – at term births, healthy weight births, breastfeeding, postpartum visit attendance, and intimate partner violence screening. Performance measures are evidence-based and derived from the Healthy Start curriculum. MIOP has seen progress in all measures and is encouraged by the positive outcomes according to a spokesperson.

As part of efforts to raise awareness of their services this week, MIOP put on a screening of Birthing Justice, a feature-length documentary film, capturing the experiences and challenges of Black women, their families, caretakers and advocates, and examines the structures and systems that determine disparate rates of mortality.

Olivares said a lot of the moms who have passed through MIOP continue to attend community events like this one.

“It’s not just service-directed or focused,” she said. “There is a bond of sisterhood that is formed because of the time we spent with them.”

In Texas, statewide initiatives to improve maternal health have included the establishment of the MMMRC and Healthy Texas Mothers and Babies, and the Texas Ten Step Star Achiever Initiative to improve maternity care practices in birthing facilities.

DSHS is the lead coordinating agency to implement the Alliance for Innovation on Maternal Health bundles. The TexasAIM initiative was launched in June 2018. Nearly all Texas’ hospitals with obstetric lines of service are enrolled in TexasAIM. The program provides hospitals with best practices for obstetric hemorrhaging, care for women with opioid use disorder, and severe hypertension in pregnancy using a  “5 R” structure of readiness, recognition, response, reporting & systems learning and respectful care.

To increase family and medical professional awareness about serious pregnancy-related complications and urgent maternal warning signs, Hear Her Texas was launched as part of a national public outreach campaign from the U.S. Department  of Health and Human Services.

As part of the Safer Childbirth Cities initiative by Merck for Mothers, the Maternal Health Equity Collaborative (MHEC) in Austin received a $1 million grant, the first in Texas. Made of up Black Mamas ATX, Giving Austin Labor Support (GALS), Healing Hands Community Doula Project, Mama Sana Vibrant Woman, Hand to Hold, and Partners in Parenting, MHEC was born out of necessity at the height of the pandemic in 2020 because doulas were being denied access to their clients in the hospitals according to Nakeenya Wilson, currently the only community member on the MMMRC.

“There is a growing and increased awareness around what it looks like to have a birth support team. Midwives are used in most countries outside the United States as the primary way to serve birthing people during pregnancy and childbirth,” MMMRC community advocate, Nakeenya Wilson said. “We’re recognizing that the way we’ve done obstetrics in this country has not been effective for everyone.”

For BMHW 2023, the MHEC organized a community baby shower for pregnant and postpartum families with kids under three years old, giving away diapers, wipes, car seats, strollers and much more.

The Maternal and Child Health Equity Research Lab at the University of Texas at Arlington led by Dr. Kyrah Brown investigates the role of maternal health services (quality of care, safety) on maternal and reproductive health inequities; and collaborates with community stakeholders to identify, implement and evaluate community-based solutions to advance birth equity.

Brown and her team leveraged relationships with community organizers to put on a week-long event line up for BMHW 2023, which included a screening of Birthing Justice.

“We have some events that are on campus and off campus, but a lot of the ideas and the planning has been a collaborative effort with our community partners,” she said.

A 2023 SXSW panel titled “Weathering the Storm of Black Maternal Mortality” focused on Dr. Arline Geronimus’ coinage of the word “weathering” to describe the health deterioration in early adulthood as a physical consequence of cumulative socioeconomic disadvantage of Black women. The panel was made up of a poet, a doula, a doctor and a community advocate.