AUSTIN (KXAN) – Jamie Brown-Rosas had a healthy pregnancy and didn’t think she would have any complications delivering her baby girl.
But she quickly realized something was wrong right before her delivery in June of 2018. She remembers being told that she couldn’t get an epidural because her blood platelets were severely low and she was at risk of bleeding out.
“When they’re telling you all of this, you’re just, you don’t even know what to say. You have a baby you’re trying to deliver, and they’re giving you all this information and it’s the first time you’re hearing it. So, it’s very scary,” explained Brown-Rosas.
The former Austin resident now lives outside of Houston and was diagnosed with HELLP syndrome during the birth of her daughter. It would be a complication that would reappear again during the delivery of her second child, a baby boy.
According to the March of Dimes, HELLP syndrome is a serious pregnancy complication that affects the blood and liver. HELLP stands for hemolysis, elevated liver enzymes, and a low platelet count.
“You think this is a completely natural occurrence to, to be pregnant and to have your baby in the hospital. And when it’s not, it’s very scary and it’s even scarier when you could possibly lose your life, lose your baby,” said the mom.
The complication is one State Rep. Shawn Thierry, D-Houston, said should be tracked by the state.
She refiled a bill this session that would create the development of a work group to establish the first statewide, online maternal mortality and morbidity data registry.
The work group would include members with appropriate expertise including physicians, an epidemiologist and a number of others with experience in maternal health.
The web portal would collect and store data from hospitals and other health care providers across the state on deaths during or within one year of delivery and near deaths.
KXAN’s “Mothers Erased” investigation in 2019 highlighted problems with how the state tracks maternal deaths and near-deaths data.
“We had inconsistent data in Texas. The collection process was not the same,” explained Thierry. “For example, if a woman died 43 days after giving birth that was not considered a maternal mortality whereas the woman who died 42 days before would be.”
House Bill 136 would require that data to be collected on a daily basis and would also include the most high-risk conditions and complications. Demographic data and patients health benefit coverage status would also be detailed.
The Department of State Health Services would oversee the data registry.
“If we do not begin to use a uniform process and start to collect this data in real time, we’re going to be talking about this for years to come – decades we’ll still be talking about the maternal and morbidity rates in Texas,” said Thierry.
Future at a standstill
The bill was referred to the Public Health Committee in late February, but there wasn’t much other movement.
A hearing is now scheduled for Wednesday, April 21st at 8 a.m. It comes a week after KXAN filed this update regarding the bill.
Thierry is hopeful and pushing for the bill to make it out of committee and to Gov. Greg Abbott’s desk. Last session, the bill cleared the same committee but never made it to the full chamber.
“We’ve still got a little time but the clock is ticking for session,” said Thierry.
She said funding for the bill would come out of the state budget which already has set aside money for improving maternal health.
Thierry explained that the data can lead to programs and services to improve outcomes.
“I’ve lived this and at the time – when in 2012 – when I had my daughter and almost lost my life, I had no idea what the statistics were,” said Thierry. I didn’t know that Black women were three times more likely to die in childbirth. I didn’t know that all women in Texas were dying at higher rates than women around the country.”
She explained that the pandemic has really shown the importance of prioritizing women’s health.
This session she’s also filed bills that push for doula services to be included in Medicaid coverage and she said that the state needs to extend Medicaid eligibility after a pregnancy.
Survivors push for awareness
After her HELLP syndrome diagnosis during the birth of her daughter, Brown-Rosas said she was closely monitored during her second pregnancy.
Though she said she was more prepared she ended up having an emergency C-section during her baby boy’s delivery six months ago.
Once again her blood platelets dipped low and this time the umbilical cord was also wrapped around the baby.
“I do remember laying on the operating table, wondering if him and I were gonna make it,” said Brown Rosas. “So, it’s intense.”
The mom is grateful that she and her babies survived complications twice.
She is now pushing for more awareness and believes a data registry would give moms like her a better idea of what’s happening statewide with deaths and complications.
“Knowledge is power, so we need it,” said Brown-Rosas.