Hundreds of women die from pregnancy or delivery complications every year across the United States, according to the Centers for Disease Control and Prevention. In Texas, the exact number of women dying isn’t clear due to errors with data collection that keep doctors and researchers from fully understanding and preventing those problems. The state developed a new method that shows the number of maternal deaths in Texas for a single year, 2012, wasn’t as high as initially reported. Still, researchers say deaths could be on the rise as the new statistics provide little insight into more recent trends.
As her lungs began to fail, Leah Bahrencu faded in and out of consciousness. She barely remembers doctors rushing her into the operating room, and what happened next is still a blur. Just hours earlier, she went in for a routine doctor’s visit 34 weeks into her pregnancy.
Her husband Vlad worried about her paleness. Her feet were so swollen she could barely walk, had lost her appetite and was having trouble breathing. Because Leah was late in her pregnancy, and expecting twins, she thought those symptoms were normal. Her doctor thought differently.
“I remember the doctor looking at me and she just said, ‘I think we are going to have the babies today,’” said Leah, a 36-year-old Austin fitness instructor and nutritionist. “I remember telling her, ‘No. We’re not having the babies today. They’re not ready. I’m not ready.’ I just had given her my birth plan the week before.”
Leah’s doctor finally convinced her to let nurses hook her up to three machines – one to watch her contractions and the other two to monitor the heart rate of the twins. Before they could finish, she heard a nurse whispering. The room filled with doctors.
Leah looked at her panicked husband Vlad and told him to call her parents. It’s the last thing she remembers before giving birth via cesarean-section on Jan. 17, 2017, to Sorana, who weighed just 3 pounds and 15 ounces, and Lukas, who weighed 4 pounds and 15 ounces.
She was unconscious when her twins arrived and was placed in a medically-induced coma for 10 days as her body recovered.
The first-time mother was diagnosed with HELLP syndrome, a life-threatening condition that affects pregnant women with high blood pressure. HELLP stands for hemolysis, elevated liver enzymes, and a low platelet count. Vlad didn’t initially know what that meant.
“I remember when they were moving her to ICU, that this is serious,” Vlad said. “I was just thinking I was the happiest dad around, and all of sudden I’m thinking, ‘Are you telling me there is a possibility that I’m going home with my kids by myself with no wife?’ It was very – it was tough.”
For weeks, Vlad split his time between visiting his newborn twins and his wife on different floors of the Austin hospital. When Leah was finally out of the coma, she was disoriented. The NICU nurses had decorated her hospital room with pictures of her twins. She didn’t recognize them.
“Something that haunts me to this day is I don’t think I asked about my kids,” Leah said. “I don’t even really think I knew or understood that I had the babies and that something had happened to me. I just knew I woke up in this room.”
Erased from report
Leah is one of about a dozen mothers who previously reached out to ProPublica and who KXAN spoke with for this investigation. She and those women say they all suffered near-death experiences related to their pregnancies. Some mothers aren’t as fortunate.
But more research is needed to determine the exact number of women dying every year statewide.
Texas made headlines in 2016 after researchers found the state’s maternal mortality rate had doubled in a two-year period, reaching a record 147 maternal deaths in 2012, according to a report in the journal “Obstetrics & Gynecology.”
In response to that report, Texas used an “enhanced” method to examine each of those deaths by matching birth records with death records for women across the state.
Last year, Texas released its revamped findings, concluding there were only 56 maternal deaths in Texas in 2012.
One of the reasons women were removed from the new total was because the state found some death certificates incorrectly listed the pregnancy status of women. In 15 cases, the state said it didn’t have enough information to determine the woman’s pregnancy status when she died.
Eleven mothers were taken off the list because, even though their deaths were pregnancy-related, they didn’t adhere to the World Health Organization‘s definition of maternal death, which is when a woman dies while pregnant or more than 42 days after giving birth.
Many pregnancy-related deaths can occur outside that timeframe, even up to a year after a woman gives birth, said Dr. Radek Bukowski, professor and associate chair for investigation and discovery with the Department of Women’s Health at Dell Medical School at the University of Texas at Austin.
“It’s kind of arbitrary,” Bukowski said. “It’s just defined by consensus by many people sitting together and basically deciding that this is what we’re going to call (it).”
Bukowski added that the 42-day cutoff allows agencies to compare maternal death rates with other countries that use the same standard.
The state agrees, saying most of its research on this topic does include “deaths up to 365 days after pregnancy.”
“The fact that most deaths occur beyond 42 days has been a foundational piece of the continuing work of (the Texas Department of State Health Services) and the task force as we strive to improve outcomes for women not only right around delivery but far beyond,” an agency spokesperson said.
Some lawmakers also want to ensure the stories of women who die aren’t forgotten.
State Rep. Shawn Thierry, D-Houston, is aiming to create a data registry that includes women the state removed from its list. She says those broader statistics could reinforce the severity of maternal deaths, perhaps setting a new standard beyond Texas and prompting more awareness and training.
“It’s shocking that in (2019), we still don’t really have the most reliable data in Texas,” Thierry said. “That’s why we need the data registry, the databank. Right now, if a woman were to pass away 43 days after she gave birth that’s not considered a maternal mortality, even if it was a pregnancy-related death.”
‘One of those statistics’
Thierry knows firsthand the fear of almost dying while giving birth.
When her daughter was born in 2012, she said it felt like her heart was stopping because medicine meant to help alleviate pain during a C-section was injected at the wrong part of her spine and travelled to the upper part of her body instead of the lower half. She said she struggled to breathe but still managed to scream and beg for help and ask doctors to give her anesthesia.
“I felt like, if I wasn’t conscious, maybe I wouldn’t be aware of the pain, and my heart would relax,” Thierry said. “That ended up being what they did, and that saved my life. I literally could have died from that, I could have gone into full cardiac arrest and I would have been one of those statistics.”
A few years later, Thierry was elected to the Texas House of Representatives and has worked to improve maternal healthcare in the state, including filing a bill this legislative session that would continue Medicaid coverage for eligible women up to one year after they deliver or experience an involuntary miscarriage.
She has also filed a bill to require cultural competency training for medical professionals to remove bias in treatment of African-American women.
Last fall, state health officials determined “black women bear the greatest risk for maternal death,” regardless of their income, education, marital status or other health factors.
“When I saw that I could have passed away just by virtue of being an African-American woman, I was fortunate that they listened to me,” Thierry said. “I was very aggressive though. I advocated for myself, and that’s what women are having to do. That’s what I’m here to change.”
‘We can do better’
The state is working to make strides in maternal health after the legislature created the Maternal Mortality and Morbidity Task Force in 2013.
“For every woman who dies, there are 50 to 100 women who suffer severe maternal morbidity, which is a severe complication of pregnancy,” said Dr. Manda Hall, associate commissioner for community health improvement at the Texas Department of State Health Services. “We know that there is work to be done and we know that we can do better.”
Hall, a member of the task force, says her group examines deaths that occur up to one year after a woman’s pregnancy ends. However, deaths occurring beyond 42 days postpartum still aren’t included in the official maternal mortality rate.
“They are reviewing medical records. They’re reviewing autopsy records. If there is some sort of law enforcement record that’s associated with this case, they’re able to look at that and have that more holistic look at that woman’s death,” Hall said. “That allows us to see what type of contributing factors may have been there.”
So far, the multidisciplinary task force says “most pregnancy-related deaths were potentially preventable,” including deaths due to cardiovascular disease, obstetric hemorrhage and infection or sepsis, according to a state report released last fall.
This year, the state also implemented a new system to address one of the things that caused errors in the 2012 maternal death data, specifically “pregnancy checkboxes” listed on death certificates.
Hall said some certifiers may have incorrectly marked women as pregnant or recently pregnant.
She said the new system prompts doctors, medical examiners and other people who fill out official death certificates to confirm a woman’s pregnancy status before submitting those records.
“We knew that we needed to make sure that the data and the information that our task force was looking at was accurate,” Hall said.
Although Texas refuted the inflated 2012 statistics, the new figure provides little insight into whether the number of women dying every year is improving, since Texas still needs to use the new method to examine 2013 onward.
“They’re spending their whole time just trying to get accurate counts instead of doing what they’re really supposed to be doing, which is coming up with ways to prevent these deaths,” said Dr. Marian MacDorman, co-author of the 2016 study and research professor at Maryland Population Research Center. “It’s a real problem.”
Many deaths are preventable
At the hospital, Leah said she garnered the nickname “miracle mom,” escaping death twice after she began bleeding out and her organs started to fail.
She doesn’t know if her situation could have been prevented, but she believes the outcome could have been better if she had recognized symptoms of an unhealthy pregnancy and told her doctor about them sooner.
“I never even considered dying. I never thought I could get this sick. I never thought that I would be fighting for my life when I had my kids,” Leah said.
The United States has a high rate of women dying during or after pregnancy, especially compared to other developed countries, Bukowski said, adding many of those deaths are preventable.
“We are still the only developed country in the world that has rates of maternal death increasing,” he said. “It’s important to remember that those are very young women, very frequently healthy otherwise, who have very long life expectancy in front of them. They have children to take care of.”
Bukowski, a practicing high-risk obstetrician, said the University of Texas recently received a $1.2 million grant from the National Science Foundation to use smartphone technology to track physical activity and social behaviors of 1,000 pregnant women in the Austin area and better understand complications during pregnancies. He said, for example, if a woman stops making phone calls, starts making more mistakes while texting or isn’t as active, that could allow researchers to predict a bad outcome and intervene rather than waiting for symptoms to develop.
“What is important is to … try to identify why certain combination of those factors are causing or are associated with maternal death. When we know those combinations, then we can hopefully predict those in women with similar combination of those risk factors,” Bukowski said. “And if we can predict them, then we have a good chance to prevent them.”
The Texas Department of State Health Services has asked the Legislature for an additional $7 million in funding for a two-year period to support the state’s maternal health initiatives.
There’s an additional $60 million in federal funding available to states across the U.S. to support maternal mortality review committees and prevention over the next five years, according to the CDC. The funding comes after President Donald Trump signed the Preventing Maternal Deaths Act into law in December.
Federal and state officials say it’s too soon to know how much federal funding Texas could receive.
A Texas DSHS spokesperson said some of those funds could go toward an existing initiative called TexasAIM, or Texas Alliance for Innovation in Maternal Health.
The program works directly with hospitals to lower the number of deaths by encouraging facilities to be prepared when responding to one of the leading causes of deaths in mothers: obstetric hemorrhages. That includes having a policy or protocol in place, so doctors and nurses facing an emergency are ready to respond.
“Our goal is that we will not see women die and that we will not see women have these severe complications associated with pregnancy,” Hall said. “We talk about data, and we talk about what that shows us. But at the end of the day, we are talking about women. We are talking about families and keeping families whole.”
At least 200 of about 230 birthing hospitals across the state are participating in TexasAIM, accounting for about 80 percent of births statewide, according to the Texas DSHS. About 8 percent of births across the U.S. take place at the 200 locations participating in TexasAIM, which means a decrease in maternal deaths in Texas could help lower the national maternal mortality rate.
“Still, the CDC’s National Center for Health Statistics hasn’t published a national rate in over a decade. A spokesperson said the agency stopped publishing maternal mortality rates in 2007, because there were discrepancies in when and how states started reporting, or not reporting, whether a woman’s death was due to pregnancy complications.
Ultimately, the CDC wasn’t confident in the data it received from various states, including Texas.
Still recovering
Even after she was released from the hospital, Leah was still weak. At home, she had several wires attached to her, draining fluids that collected in her stomach-area and caused it to swell.
“I had these two babies. You want to be a mother and I couldn’t do most of the stuff,” she said. “I would sit there and watch them cry until someone picked them up just because I didn’t have the physical strength.”
Leah still feels the impact of her near-death birth experience. She was diagnosed with Type 1 diabetes. She takes supplements every day to help her break down food and absorb nutrients because of problems with her pancreas.
Two years later, Leah said she tries not to be angry. She can’t go back in time. But, there are days she’ll see or hear something that triggers reminders of the first few weeks after she gave birth – days she doesn’t remember.
“I always envision having my kids and having those moments from day one, you know that connection right away,” Leah said. “Maybe they thought their mom had abandoned them. I mean, all these thoughts go through your head.”
When she finally met her twins two weeks after giving birth, Leah was too weak to hold her arms up herself. Nurses carefully placed pillows around them to prop them up. Lukas and Sonora had already started to doze off as the nurses gently placed one in each of her arms.
Her chest heaved up and down. Her voice was still shallow from having a breathing tube down her throat. As she looked down at her twins for the first time, Leah softly whispered, “Hi.”
“Both of them opened their eyes and looked at me,” she said. “It was the best feeling in the world.”