This article was originally posted on the Texas Tribune website.
In the photos flashing on the projector screen, Michelle Zavala had a look of serenity.
In one, her eyes were closed as she smiled with her newborn daughter Clara nestled under her chin. Another showed her kissing her husband Chris on vacation. Another captured her laughing while stomping grapes at a vineyard, radiating the positivity that people loved about her.
Below the screen, Michelle lay in a casket, surrounded by bouquets of flowers. The Pflugerville woman died in July — just nine days after giving birth to Clara — from a blood clot in her heart. She was 35.
Across the United States, maternal mortality — when a mother dies from pregnancy-related complications while pregnant or within 42 days of giving birth — jumped by 27 percent between 2000 and 2014, according to a 2016 study published in the medical journal Obstetrics and Gynecology.
But researchers were stunned by Texas, where the maternal mortality rate had apparently doubled between 2010 and 2012. That year, 148 women died as the state’s mortality rate hit its highest level since the Centers for Disease Control and Prevention started recordkeeping with its current disease codes in 1999.
The study’s authors called the increase troubling and difficult to explain “in the absence of war, natural disaster, or severe economic upheaval.”
But the state’s real maternal mortality rate is now a matter of debate. Although the Department of State Health Services website shows that Texas’ maternal mortality rate was 35.2 per 100,000 births between 2012 and 2015 using CDC data, agency officials now say that the number of mothers who died during that period is actually more than 30 percent lower — 24.3 deaths per 100,000 births — thanks to a new methodology the state recently began using to calculate deaths. While state officials say the new, lower mortality rate is more accurate, they stopped short of calling it the official maternal mortality rate because the new methodology is still being refined.
Meanwhile, a study published in the medical journal Birth this month analyzed CDC data from 2006 to 2015 and found that the state’s maternal death numbers are inflated. The study’s authors said that while CDC’s data isn’t reliable, “the fact that maternal mortality increased in Texas is not in dispute.
Maternal deaths on the rise in Texas
Marian MacDorman, a research professor with the Maryland Population Research Center and the Birth study’s lead author, said she was surprised by “just how bad the data was.” She said the new methodology the state is developing is also flawed because it omits women who died after miscarriages or other complications that prevented them from giving birth.
“This has a direct impact on women’s lives,” MacDorman said. “If an accurate maternal mortality rate is not available, prevention efforts are scattered and unfocused, and more women die if you can’t figure out what the problem is.”
Chris Van Deusen, a spokesman for the Department of State Health Services, which focuses on public health issues, said the state expects to continue refining and improving the accuracy of maternal mortality data.
“Our position is that it’s an improvement in the numbers,” Van Deusen said. “It’s more accurate than the numbers that have been out there, and we’re using that to guide our decisions on maternal mortality … until there’s a more reliable maternal mortality rate that we can go on.”
The Texas Tribune has heard harrowing tales of mothers enduring medical nightmares: They bled out, had strokes and heart attacks, lost babies during delivery. Dozens of experts and advocates say maternal deaths are a symptom of a bigger problem: Too many Texas women — particularly low-income women — don’t have access to health insurance, birth control, mental health care, substance abuse treatment and other services that could help them become healthier before and after pregnancy.
Survivors reported being afraid to get pregnant again, choosing instead to put their family plans on hold or swear off of having more children. They were often diagnosed with postpartum depression or anxiety. Families of women who died have been left wondering what went wrong and how their loved ones’ deaths could have been prevented.
Faced with alarming public health statistics that drew national attention, Texas lawmakers created a Task Force on Maternal Mortality and Morbidity in 2013 to study the problem and make recommendations to curb the state’s rising rate.
In October, the task force released a report showing that the Texas women most at risk of dying after giving birth include black women over 40; unmarried women; women who use Medicaid, pay for insurance out of pocket, or have no insurance; and women who give birth through cesarean delivery. They’re also more likely to enter pregnancy with health problems like obesity, diabetes, high blood pressure and smoking habits.
The Tribune’s investigation found that lawmakers have squandered opportunities to help more women access services that could save their lives:
- Hundreds of thousands of low-income women who, under federal law, would be eligible for publicly funded health insurance do not qualify for coverage in Texas because state leaders rejected a coverage expansion offered under the Affordable Care Act.
- State legislators’ decision in 2011 to change how Texas offers women’s health services has left thousands of women without crucial health care before, during and after pregnancy. That included a $73.6 million cut to family planning services that led to roughly 100,000 fewer people being served the following year.
- The same year, Republican state leaders moved to exclude Planned Parenthood — a top women’s health provider in the Family Planning Program at the time — even though its participating clinics were not performing abortions.
Overall, black mothers are at the highest risk of dying as a result of pregnancy, according to the task force report: While they delivered only 11 percent of the babies in Texas from 2012 to 2015, they made up 20 percent of maternal deaths. White women delivered 34 percent of the state’s babies over the same period and accounted for 39 percent of deaths, while Hispanic women accounted for nearly 48 percent of the state’s births and 38 percent of deaths.
Black Texans disproportionately affected by maternal mortality
Curbing Texas’ maternal mortality rate “isn’t going to be a situation where there’s a single cause and single solution,” said Lisa Hollier, who chairs the state task force. She said it’s “increasingly complicated” to care for pregnant Texas women because more of them have chronic health problems; they’re getting prenatal care late or not at all; and they’re having babies at a later age than Texas women in recent generations.
“We’ve got all of these things that start to add up,” Hollier said. “I imagine all of these things come together to impact what we are seeing.”
Zavala’s pregnancy was a complex one. She had to keep her hyperthyroidism under control and take progesterone to prevent her from giving birth prematurely. During her pregnancy, she developed gestational diabetes and had to have her blood tested six times a day.
Still, Clara was born healthy and the couple was able to take her home right away. But that weekend, Michelle’s right foot swelled.
“Clearly, everything was not OK,” Chris Zavala said.
A couple of days later, Michelle suddenly couldn’t breathe. Chris rushed her to the hospital, where doctors took X-rays and told him she needed to be moved to the trauma care unit.
“When they wheeled her into that trauma room, I went and held her hand and told her everything was going to be okay, and that was the last thing I said to my wife,” Chris said.
Changing Texas Women’s Health Programs
Sable Swallow could hear her brain bleeding in the Walgreens parking lot as she waited in the car with her newborn son in March 2014.
The then 25-year-old was having a stroke.
Swallow had been released from a McAllen hospital just 30 minutes earlier, and her husband had gone inside the pharmacy to pick up her prescriptions. On the way there, she told him something didn’t feel right. By the time he came back to the car, Swallow couldn’t talk and her right side was numb.
“It was bizarre,” Swallow said. “I could feel my heart beating into my head.”
Swallow had high blood pressure after giving birth — a condition known as postpartum pre-eclampsia. She said she repeatedly told nurses she had a terrible headache but they discharged her anyway.
After her stroke, doctors put her into a medically induced coma for two weeks. She had to relearn how to walk and talk.
“I should probably be dead, honestly,” she said.
In the end, she navigated a patchwork state system to help cover her hefty medical bills.
When Swallow found out she was pregnant, she was uninsured and working as a server in a McAllen restaurant. “There was no way I could afford health insurance,” she said.
She was told by a state worker to apply for Medicaid, the joint federal-state health insurance program for the poor and disabled. She qualified for Medicaid for Pregnant Women, which covers doctor visits, lab tests, drugs and delivery. More than half of Texas births are covered by Medicaid, according to the Texas Health and Human Services Commission, the state’s health agency.
Swallow said she had to apply for the program twice before she got in at four months pregnant. When her Medicaid coverage ended two months after she gave birth, she and her husband were able to get health insurance through the federal health exchange at Healthcare.gov.
Swallow was lucky compared with other pregnant Texas women who have to pay out of pocket for prenatal care and other health needs before giving birth — or forgo care until they deliver.
Texas has the highest uninsured rate for women ages 19-64 in the country at 19 percent, according to the Kaiser Family Foundation, a nonprofit health policy group based in Washington, D.C. A lack of insurance makes it harder for women to manage long-term health issues — and for women of child-bearing age to get the prenatal care that can help prevent maternal deaths.
Kami Geoffray, CEO of the Women’s Health and Family Planning Association of Texas, an organization that works to increase access to family planning programs, said lawmakers haven’t gotten serious about addressing shortcomings in the state’s health care programs for women.
“They have this notion that being uninsured is not a problem,” she said.
Reproductive rights advocates say Texas women are still feeling the effects of legislators’ decision in 2011 to chop $73.6 million from the state’s $111.5 million budget for the Family Planning Program, which offers birth control, pregnancy tests, counseling on spacing out births and screening for cholesterol, diabetes and high blood pressure. The number of people the program served dropped from more than 195,000 in 2011 to fewer than 83,000 the following year.
That same year, state leaders moved to exclude Planned Parenthood from the Medicaid Women’s Health Program, a joint federal-state program that for years provided preventive care — including pap smears, breast exams and contraception — to 105,000 Texas women per year. When the state barred clinics affiliated with Planned Parenthood from participating, the Obama administration kicked Texas out of the program altogether, citing Medicaid patients’ right to choose any provider they want.
The state created its own replacement, called the Texas Women’s Health Program — and from 2011 to 2013, the number of women it served dropped 25 percent, according to a Texas Health and Human Services Commission report from January 2015. In 2016, the state replaced that program with yet another one, Healthy Texas Women — which aims to provide low-income women with pregnancy tests, birth control, screening and treatment for postpartum depression, plus annual exams to screen for breast and cervical cancer, diabetes, high blood pressure and high cholesterol.
Today, more than 240,000 women are enrolled, according to the state’s health agency. Enrollment in the program has increased more than 118 percent since its launch in July 2016.
Christine Mann, a spokeswoman for the agency, said in an emailed statement that enrolled women “now have access to a broader array of services.”
The state’s other major option for providing health care to low-income women — expanding Medicaid through the Affordable Care Act — has been a nonstarter in the GOP-dominated Texas Legislature. An estimated 1.1 million low-income Texans would be eligible for coverage under a Medicaid expansion, according to the Kaiser Family Foundation.
Advocates argue that expanding Medicaid eligibility would allow more uninsured women to be covered for much-needed primary care, as well as prenatal and postpartum care if they get pregnant. Uninsured women without access to primary health care before getting pregnant may not be able to control chronic diseases that could cause pregnancy complications.
Republican leaders, including Gov. Greg Abbott, Lt. Gov. Dan Patrick and former Gov. Rick Perry, have argued that expanding Medicaid would increase health care costs for the state — especially if the federal government ever breaks its promise to help pay for the surge of newly eligible people.
And they argue they’re making their own strides at reducing maternal mortality in Texas. In 2017, Abbott signed several bills focused on it: One requires the Department of State Health Services to publish best practices and protocols for reporting pregnancy-related deaths. Another will allow more than 200,000 mothers to receive postpartum depression screening.
Legislators also passed a bill requiring the maternal mortality task force to study why so many Texas women are dying; health and socioeconomic disparities among Texas mothers; what other states are doing to curb their maternal mortality rates; and how Texas health providers can improve pregnancy outcomes.
State Sen. Lois Kolkhorst, R-Brenham, said in an emailed statement that the Legislature’s maternal mortality bill “contained comprehensive policies for improving maternal health.” She added that Texas needs “to be smarter with our current state resources and better coordinate services for women.”
“I strongly believe we can better utilize current resources and programs to improve women’s health in Texas,” Kolkhorst said. “When we spend health care dollars more efficiently, more people can be served and better outcomes can be achieved.”
But not all proposed legislative solutions made it through in 2017. Lawmakers failed to pass a bill that would’ve extended a mother’s eligibility for postpartum depression screening and treatment for a year through the Medicaid and Children’s Health Insurance Program-Perinatal — a program for pregnant women who can’t get Medicaid and don’t have any other health coverage. Another bill to extend full Medicaid benefits for mothers for a year after delivery — instead of only two months — also failed.
“The obstacles to these remedies are a social agenda that involves a definition of life that doesn’t include women, and it only includes a fetus up until the point it’s born,” said state Rep. Jessica Farrar, D-Houston, chairwoman of the Texas House Women’s Health Caucus. “People want to err on the side of life, and here we are where women are dying and the state is not addressing it.”
Fewer Black Women Get Crucial Prenatal Care
In 2015, 62.2 percent of Texas mothers received prenatal care during the first trimester, according to the Texas Department of State Health Services, an agency focused on public health issues. That’s well short of the 77 percent goal that Texas public health officials have set under the Healthy People 2020 initiative, a federal program to improve various public health outcomes over a decade.
Prenatal care helps doctors monitor pregnant women’s health over the course of a pregnancy, monitoring high blood pressure and gestational diabetes, which can lead to complications.
“If a woman can get in prenatal care early, she’s most likely to go to postpartum visits and more likely to have a healthy pregnancy,” said Kim Baker, a member of Harris County’s Reducing Maternal Mortality Research Team, a local group focused on studying why women in the county have pregnancy complications or die from pregnancy. “If you don’t seek prenatal care, then you’re much more at risk or you may deliver at a state where your body is that much more unhealthy.”
According to statistics from the Department of State Health Services, nearly half of black mothers in Texas — 46.2 percent — did not get prenatal check-ups within their first trimester of pregnancy in 2015. Hispanic women were close behind at 42.8 percent, while 29.7 percent of white mothers didn’t attend first-trimester prenatal appointments.
Hollier, chairwoman of the state Task Force on Maternal Mortality and Morbidity, said Texas needs to find ways to get more women into prenatal care in that critical first trimester.
She said the state must more quickly process applications for Medicaid for Pregnant Women and that health care providers must get high-risk women in for prenatal appointments faster.
Other states have been more aggressive than Texas in trying to reduce maternal deaths. California lowered its maternal mortality rate by 55 percent between 2006 and 2013.
California is one of 15 states that have adopted a national model for improving care for pregnant women through 10 “bundles” — collections of proven strategies hospitals use to prevent and manage pregnancy complications such as hemorrhaging and high blood pressure.
The state also launched a “Maternal Quality Care Collaborative” that brought state agencies, hospitals and professional health care associations together to prevent pregnancy complications and deaths. It’s seen whopping success with how hospitals now handle two potentially lethal conditions: pre-eclampsia and hemorrhaging during and after labor.
The 126 California hospitals that began using the new procedures reduced pregnancy complications by nearly 21 percent between 2014 and 2016.
Texas Department of State Health Services officials say the state is implementing two bundles: one for hemorrhaging and another for hypertension. They’re also working with other states to develop another bundle for opioid abuse.
George Saade, chair of the Texas Collaborative for Healthy Mothers and Babies, and a doctor at the University of Texas Medical Branch in Galveston, said it may be difficult to convince hospitals — especially smaller ones that often don’t have the staff or budget to try new things — to give the bundles a shot. He pointed out that maternal mortality “is very sad” but “fortunately, it’s also very rare.”
“It’s not like [hospitals] don’t want to save lives, but they have so many different things they could spend their money on to save lives,” Saade said. “At some point, they have to prioritize what they are going to spend money on. ”
Too Many New Moms Skip Postpartum Visits
In Houston, Syreeta Lazarus was thinking about how she needed to go grocery shopping and get her car washed as she sat in the hospital getting her blood pressure checked.
It was 2012 and Lazarus, then 32, had given birth to her daughter Zoila a little more than a week before. Her stomach and head hurt, her back felt funny and she was a little dizzy. She noticed the nurse press a blue button as she left the room but didn’t think anything of it. Minutes later, doctors and nurses were peppering her with questions about her blood pressure history, her diet and her urine.
Not long after, Lazarus was getting strapped down to a bed. She was having an episode of postpartum pre-eclampsia, where a recently pregnant women’s blood pressure rises rapidly.
“They basically said, ‘We’re going to get you some magnesium immediately because you’re about to have a stroke or seizure at any moment,’” Lazarus said. “That’s when I started crying.”
She was released after a couple of days, but had to be readmitted for the same problem within a week.
Her doctors and nurses told her she needed to keep calm until her blood pressure stabilized. Lazarus remembers they were afraid even the headlines would upset her. It was the day of the Sandy Hook Elementary School shooting.
“They said, ‘You can’t even watch the news,’” Lazarus said.
Postpartum care is arguably as important as prenatal care. Federal data shows that more than half of maternal deaths happen after a woman gives birth, most often caused by cardiovascular disease, infections and hemorrhages.
But the American College of Obstetricians and Gynecologists found in 2016 that as many as 40 percent of women didn’t get postpartum care.
“So many of our patients don’t take care of themselves in the postpartum period because they are taking care of their newborn,” said Sean Blackwell, president-elect for the Society for Maternal Fetal Medicine and a doctor in Houston. “Mom will commonly skip her visits to take care of her babies. Or, she’s taking care of her other kids and family, and sacrificing her own health, which is going wacky.”
Meanwhile, Texas’ infant mortality rate dropped 7 percent between 1999 and 2015, according to the Centers for Disease Control and Prevention.
A baby’s first pediatric visit usually takes place three to five days after birth, but a mother typically won’t see her doctor until four to six weeks after delivery, if at all — and serious complications often emerge in the first few days and weeks after delivery.
Saade said in an ideal world doctors wouldn’t just have one postpartum visit with their patients. They’d have a series of them so they could check a new mother’s glucose levels and blood pressure and offer nutrition counseling.
“That’s where we fail when we do one visit,” Saade said. “It’s a wellness program. We have to bring them back to healthy lifestyle changes, screenings, medication and treatment.”
Experts have said postpartum visits are also an important time to talk to mothers about spacing out their pregnancies and finding the best birth control option for those who want it. According to Texas’ 2015 Pregnancy Risk Assessment Monitoring System, which surveys thousands of recently pregnant Texas women, nearly 35 percent of women who gave birth had unintended pregnancies.
That puts more women at greater risk of death, said Janet Realini, chair of the Texas Women’s Healthcare Coalition, a group of organizations focused on access to preventive health care.
Advocates say many uninsured Texas women can’t afford to pay for birth control out of pocket and often don’t qualify for Medicaid or the state’s other women’s health programs. Realini said the state should invest more money into the Family Planning Program and Healthy Texas Women to offer more family planning services so more low-income women have access to affordable birth control.
“If someone does not want to be pregnant, then avoiding that pregnancy avoids that mortality risk, that amount of physical and mental taxing of the person that could make their (existing health) problems worse,” Realini said.
There’s a racial divide in postpartum care in Texas, too. Hispanic women in Texas skip postpartum visits at a rate of 18.9 percent; 10.1 percent of black mothers don’t get postpartum checkups, nor do 9.6 percent of white women, according to the 2015 Pregnancy Risk Assessment Monitoring System.
Insurance coverage also matters. For women who gave birth and paid out of pocket for care or didn’t specify how they paid, 27.7 percent didn’t show up for their postpartum visit, versus 16.6 percent of women covered by Medicaid, according to Monitoring System data.
“With the low rates of women who attend postpartum visits, we’re missing an opportunity to talk to women about their future health,” Hollier said.
Lazarus was lucky; she was released after a two-day hospital stay. But black mothers in Texas like her are twice as likely to die after a pregnancy-related hospital stay than any other group of women.
Lazarus said there’s not enough information about which signs and symptoms new mothers should look for after delivery.
“I didn’t know that you can have all of these problems or reactions or issues,” Lazarus said. “I know that you need to be careful, stay healthy all that you can, but no, ‘This can happen, do you know the signs?’ I had no clue. I had my mom’s stories to go on, but formally from a doctor? No.”
‘I Needed Michelle’
The parking lot of the Cook-Walden/Capital Parks Funeral Home in Pflugerville was packed the August morning of Michelle Zavala’s funeral. The guestbook had more than 180 signatures in it by the end of the service.
During Chris’ eulogy, he wore the same suit from his wedding day and spoke of how her death is “a wound that threatens to never heal.”
“One day I realized I didn’t just love Michelle, that I didn’t just want want to be with Michelle, that I needed Michelle,” Chris said. “I needed Michelle like a tired man needs rest, like a drowning man needs air.”
Later in the ceremony, as guests lined up to give condolences to the family, he stepped away to his wife’s casket as he watched the photo slideshow. He gently caressed the top of her head before turning back to his family and the rest of the guests.
Minutes later, the casket was closed.