AUSTIN (KXAN) — Nakeenya Wilson can recall story after story.

“We just had a mom last week who had to be readmitted to the hospital, due to postpartum complications. And we were able to send doulas for 24-hours, around-the-clock care, for her baby so that she can be with her baby and get the medical care that she, you know, needs to receive,” Wilson explained.

She said it’s thanks to a million-dollar grant through the Maternal Health Equity Collaborative, adding that before the grant it would have been different circumstances.

“Prior to this grant, we will see moms who would literally discharge against medical advice and potentially put their life at risk,” Wilson said.

Wilson is a founding member of the organization started during the pandemic and which advocates for improving maternal health among Black women.

Delayed data

“The Maternal Health Equity Collaborative received the million-dollar grant back in 2020, that allows for us to provide perinatal childcare for Black women that can range from the time that they’re pregnant – childbirth and then up to 12 months postpartum,” Wilson explained.

She also sits on the state’s Maternal Mortality and Morbidity Review Committee. The group is studying data and trying to understand why Texas moms are dying and if those deaths were preventable.

The report which includes pregnancy-related deaths and disparities was supposed to be released last month but the Texas Department of State Health Services said it’s still being reviewed.

Chris Van Deusen, Director of Media Relations with DSHS said the committee is still in the middle of reviewing 2019 maternal deaths and that year’s maternal and fetal death files were recently finalized and staff is reviewing them which is an extensive process.

“We look forward to continuing to work with legislators on ideas about ways to speed up the review committee’s work as well as the maternal health data we can share,” said Van Deusen.

In a letter given to KXAN investigators and sent to Governor Greg Abbott, the department said the committee had reviewed 118 cases but had identified at least 31 additional cases. The data which was supposed to be released in September is now expected to be complete by next summer.

“I was at the meeting when the announcement was made, although I did not know about it ahead of time. So, I was very shocked and disappointed,” Wilson said. “I think that not having accurate data handicaps us and that those who are the most vulnerable will see the greatest impact,” said Wilson.

Lawmaker pushes for accountability

State Representative Shawn Theirry, D-Houston, has been sounding the alarm for years and pushing legislation that would include updated data collection on deaths during or within one year of delivery and high-risk conditions and complications.

“Texas Women cannot afford to wait on this information, the outcomes. The findings in the report drive our healthcare establishment – so safety protocols may be changed. We can draft policy to address why do we have such disparities based on race,” said Theirry. “Our hands are tied in the Texas legislature, we can’t craft any meaningful policy to address maternal health outcomes without the data.”

She said the data that has been available to the public is a decade old. KXAN investigators have extensively detailed problems with how the state tracks maternal deaths and near deaths since 2019.

“If we have an ability to implement better safety protocols, to find out what policies we can draft to make sure that no woman dies in childbirth, why wouldn’t we do that? No woman should die from hemorrhage in 2022,” said Thierry. “I represent a district that sits in the world-class medical center, where people fly from all around the world to get health care treatment. How could we now then say that we have some of the worst outcomes when it comes to maternal health.”

During Texas’ last legislative session, Thierry filed a bill that would have established an online maternal mortality and morbidity data registry, which would have essentially had real-time reporting of maternal health outcomes.

The bill did not pass, but Thierry said if it had, there would not be a need for a state agency or department to provide the information.

Thierry said she will refile the bill next legislative session, which starts in January.

Hear Her Texas Campaign

A new CDC national report released found that four in five pregnancy-related deaths in the US are preventable. The agency explained that the data is based on detailed assessments of more than a thousand pregnancy-related deaths between 2017 and 2019.

The report said mental health conditions including deaths to suicide and overdose/poisoning related to substance use were the leading cause of pregnancy-related deaths.

The state is in the process of rolling out the Hear Her Texas campaign this fall.

It includes testimonials from Texas mothers and encourages health care providers, family, and friends to listen and act when a mom expresses concern. 

“We’ve all got to get on the same page about getting accurate, relevant, up-to-date information to inform better and more comprehensive care,” Wilson said.

She has three children and said her pregnancies were high risk. In her second one, she did have a traumatic birth experience.

“Being someone who was a near miss, I think that I have a deeper understanding of you know, what this really means when we hold off on providing the information necessary to make changes,” she explained.