Maternal Mortality | Bearing the Burden

They found Calista Johnson, 32, in severe pain, holding an ice pack against her back. She walked to the door with some difficulty to meet them.

It was already 80 degrees in Red Oak, TX, a suburb of Dallas. The air was thick with humidity that wouldn’t quite turn into rain.

Calista had been home for 3 days recovering from the birth of her second child, a much-longed-for daughter she had named Angelique after her maternal grandmother, Anna, and her paternal grandmother, Dominique.

Her husband, Allen, remembers that she’d had a violent headache since coming home from the hospital.

At 4 a.m., lying in bed, she told Allen the headache had become far worse than one of her usual migraines. It wasn’t easing despite all the Tylenol she was taking.

“I asked her if she needed me to stay home,” he said.

She told him she would be OK.

Calista had some back pain, too, but she dismissed it as lingering discomfort from the epidural they gave her when she was in labor. But when she got up to go to the bathroom that morning, her back pain got much worse.

“I could tell, because when I was in the shower, even with the water on … she was wailing. The moan was so loud, even past the shower,” Allen says. “I should have gone on and done something.”

At Calista’s urging, Allen went to work.

Around 8 a.m., he texted Calista to ask her if she was OK. She said she was doing better.

By 10 a.m., though, she knew something was seriously wrong.

First she phoned Allen and told him to come home. Her speech was slurred. She needed help. Then she dialed her mother-in-law, Dominique, who lived just a few blocks away.

Dominique found Calista in the bathroom. She couldn’t lie down, and she told Dominique she couldn’t stand up.

“She was hollering,” Dominique says. “She was screaming at the top of her voice,” Dominique called 911. EMTs pulled up 3 minutes later and strapped Calista to a stretcher. As they wheeled her toward the ambulance, Calista begged Dominique to take care of her two children. She made her mother-in-law promise to learn how to use the new car seat she’d bought for the baby.

As the ambulance backed out of the driveway, a feeling of dread overwhelmed Dominique.

“I just knew it. I said, ‘she’s not going to make it,’ ” Dominique says.

Maternal Deaths Raise Concern

When doctors pronounced Calista dead, at 1:45 p.m. on June 7, 2017, she became another example of a sad statistic in the U.S.

Over the last 25 years, most countries around the world have made encouraging strides against pregnancy-related deaths. The U.S. is not one of them.

Here, the number of maternal deaths appears to be rising, though researchers aren’t yet sure if that’s because more women are dying or because of changes to the way states count these cases.

What is clear is while the U.S. far outspends most other wealthy countries when it comes to childbirth, it has some of the worst outcomes for mothers.

In 2016, there were almost 29 maternal deaths for every 100,000 births in the U.S. That compares with 8 per 100,000 in Canada, 7 per 100,000 in the U.K., and 5 per 100,000 births in Australia, according to data estimates from the University of Washington’s Institute for Health Metrics and Evaluation, which tracks deaths from every cause around the world.

Beyond the women who lose their lives, many thousands more are gravely harmed by pregnancy or childbirth. While there are about 800 maternal deaths annually in the U.S., there are over 50,000 instances of severe injuries to mothers around the time of childbirth, according to a CDC study.

These risks are not shared equally.

They are highest — by far — for African-American mothers. Black women are 3 to 4 times more likely to die of pregnancy-related problems than white women. In fact, deaths among black women are largely driving the apparent increases in maternal deaths in the U.S.

About half of all maternal deaths in the U.S. are considered preventable. Two studies have found that African-American women are also more likely than whites to have preventable deaths in pregnancy.

While poverty and access to health insurance and health care explain some of this racial gap, they don’t explain all of it. Black women are at higher risk of death even when they’re well-educated and have higher incomes — a fact that’s confounded doctors and social scientists.

“If you go back in time and you look at statistics, even in the early 1900s, that disparity was there. So here we are 100 years later, and that disparity persists,” she says.

Researchers nationwide are just beginning to untangle some of the reasons for this disparity in maternal deaths.

“It’s so complex, I think there are a number of things that come into play,” says Louis.

Studies have shown, for example, that black women are less likely to get care early in their pregnancies. When they do get care, they are more likely than others to be treated at low-quality hospitals, Louis says. That raises their chances of having serious complications after childbirth. Hospital quality is thought to account for nearly 50% of the racial disparity in severe maternal injuries, according to a study published last year.

Then there are cultural beliefs. A legacy of experimentation on black people in the U.S. without their consent has fueled widespread distrust of the health care system in this country.

Black women may reject certain treatments out of suspicion or fear, but they may also not be offered some treatments by health care providers because of conscious or unconscious biases.

“If you only address one thing, it’s not going to make a dent in it. You have to look at all of those potential contributing causes,” Louis says.

What’s Going on in Texas?

In Texas in 2015, the latest year for which statistics are available, 95 African-American mothers died for every 100,000 births, compared with 36 deaths for every 100,000 births among whites. Black women in Texas have higher odds of dying from pregnancy-related causes than women in the Dominican Republic, Panama, or Jamaica, according to data from the CDC and the World Bank.

Texas has been in the spotlight on this issue because it has recently seen a large rise in these deaths.

“It certainly seems like, from the data, that maternal mortality rates are quite a bit higher in Texas,” said Marian MacDorman, Ph.D., a research professor at the Maryland Population Research Center. She and her co-authors are working on a follow-up study to understand why the numbers rose so quickly there.

The findings caused an uproar and generated hundreds of articles calling on Texas to reverse its recent cuts to women’s health services.

“Texas, I have to tell you, they have not done well by women. They have some of the worst stats for maternal mortality, but also for women’s health in general,” says Stacie Geller, Ph.D., director of the Center for Research on Women and Gender at the University of Illinois at Chicago.

In response to the outcry, the Texas Department of State Health Services did its own analysis of maternal deaths. It agreed there was a rise during the years in question, but the department says it’s less severe than previously reported — ranging between 25% and 77%, depending on statistical methods.

The state has also convened an expert panel — the Maternal Mortality and Morbidity Task Force — to review every maternal death there. The task force was given limited funding, though, and has been working slowly. This year, under public pressure, the Texas Legislature extended the term of the task force to 2023 but gave no additional money to fund its work.

The Texas Department of State Health Services says it is working to support the task force and speed up case reviews. It also points to new programs designed to make women healthier before they get pregnant, “since we know many maternal deaths are linked to chronic disease like obesity, diabetes, and high blood pressure,” says Chris Van Deusen, director of media relations.

These deaths appear to be rising much faster for black women than for other racial groups, and much faster than they are for black women in the country as a whole.

Thierry recently authored a bill that directs the task force to study the reasons why black mothers are dying at higher rates than other races.

For Thierry, the question is a very personal one. During the birth of her daughter, in 2012, she had what doctors think was something called a high epidural — where a dose of pain medication injected into the spine is either too strong or delivered too close to the heart.

“It was the worst experience I’ve ever felt. I could literally feel it moving up to my chest. It was like going down in quicksand, and I was not able to move,” Thierry says.

Although she was reluctant to speak up at first, Thierry grabbed a nurse’s arm and begged her for help. She lived, and she knows she’s lucky. She knows she might have been treated differently if she had Medicaid or no insurance at all.

“Maybe they would have been more dismissive of a different person,” Thierry says.

What other women and families should take away from her story, she says, is the importance of speaking up and advocating for yourself. Ask questions, and if you’re not comfortable with your doctor, find another one.

“All these things could affect your life,” says Thierry.

Code Blue

Through the last months of her pregnancy, medical records show that Calista’s blood pressure had been normal. But on the day she died, something had changed.

Paramedics measured her blood pressure. Normal blood pressure is less than 120/80. At 10:29 a.m., hers was 155/94. Her pain, paramedics noted, was 10 out of 10. They couldn’t figure out what was causing it.

In the ambulance, Calista was hurting so much that she asked if she could stand up on the way to the hospital. Strapped onto a gurney, and in distress, she threw up.

In the emergency department, nurses learned she’d recently had a baby. They quickly transferred Calista to Labor and Delivery. As a team was trying to figure out her condition, she had a seizure. They paged Kristin Noelle Williams, MD, the attending obstetrician.

“On my way, in the hall, I could hear the patient screaming incoherently,” she wrote in her notes on the case.

By the time Williams reached her, Calista was thrashing on the stretcher, and she couldn’t answer any questions. Nurses swarmed her bedside, trying to start an IV.

Her pulse was racing at 160 beats per minute. Blood pressure changes suggested her heart was under heavy strain.

Williams quickly diagnosed eclampsia, which includes, among other symptoms, a dangerous spike in blood pressure that can happen during pregnancy or up to 6 weeks after a woman delivers her baby.

Williams ordered a dose of magnesium sulfate to stop the seizure and another drug to lower her blood pressure, which had spiked even higher. Calista was flailing so much, they had to sedate her to get an IV line started.

With little information about her patient’s history, and no family there to help answer questions, Williams ordered a slew of blood and urine tests and imaging scans to try to get a handle on what was happening.

She sent a nurse with an urgent request to get Calista’s medical records from Parkland Hospital, where she’d delivered her baby just days earlier.

They lost Calista’s pulse. Then her heart stopped.

A code blue — an urgent message to hospital staff that a patient is crashing — was called overhead. It was 11:15 a.m.

‘It Seemed as if She Was Involved in a Car Crash’

Calista was born in Malawi, the youngest of eight children raised by missionaries Geoffrey and Anna Banda. In 2002, the Bandas invited the Rev. Fred Johnson and his wife, Dominique, to visit them.

Calista, who was 16 at the time, quickly became attached to Dominique.

When it was time for the Johnsons to leave, Dominique asked Calista if she would like to come visit them in the U.S. She said yes, and they arranged for a travel visa so she could attend school in Texas.

Calista lived with the Johnsons for a year. She became good friends with their teenage daughter, Uniquka, an aspiring fashion designer, and she fought constantly with their son, Allen.

“They couldn’t stand each other. It was like they were pawing each other’s eyes out,” Dominique says.

After Calista went home to Malawi, she continued to email Allen.

“I guess when she went back, he realized he loved her,” Dominque says. When she returned to the U.S. a couple of years later, Allen and Calista got married, officially tying the knot a day after Calista’s 23^rd birthday in 2008.

Their son, Kareem, was born the next year. He was eventually diagnosed with severe autism. While Allen worked during the day, Calista stayed home to take care of Kareem.

Anna says the family was overjoyed when Calista emailed a picture of herself with newborn Angelique. In her note, she promised to bring the baby to Malawi in December for a visit.

The day after they heard the news of Angelique’s birth, they learned that Calista had died.

“It seemed as if she was involved in a car crash,” Anna says.

The Bandas traveled to the U.S., to bury her and to help take care of their grandchildren until their travel visas expire in December.

They’re living in an RV that’s parked behind the Johnsons’ modest brown brick ranch house. The house has been renovated over the years to make room for the extended family. Even so, space is tight. Allen, Kareem, and Angelique live at the home, and Uniquka is there, too, with her newborn son, Brayden, while her husband, Chris, finishes a tour in the military.

She says all of her other daughters have given birth safely in Malawi, a country which has higher rates of maternal mortality than the U.S. But it also has a national campaign to cut those deaths — the Safe Motherhood program — something that’s lacking in the U.S.

In 2014, the U.S. spent an average of $9,403 on health care per person. In Malawi that same year, per capita spending on health care was $94, the World Health Organization says.

“I thought she was in a far better position than her siblings,” Anna says.

Insurance for an Unborn Baby, but Not Its Mother

When Calista first learned she was pregnant with Angelique, in the fall of 2016, she was covered by a Blue Cross Blue Shield policy through her husband’s employer. But the company switched to a high-deductible health plan last winter, which meant the family would have to pay hundreds more out-of-pocket for the baby’s birth.

Allen says the family simply didn’t have the money, so Calista applied for public assistance.

The family met income requirements for pregnancy Medicaid, which covers about half of births nationwide.

Because Calista had a green card and was not yet a full U.S. citizen, in Texas, she was not eligible for full Medicaid, which would have covered medical care for mom and baby, along with the cost of delivery.

Instead, she was placed on a kind of insurance that covers care for the developing baby, but not its mother. It’s called perinatal CHIP.

Perinatal CHIP is mostly meant to help undocumented mothers because if they give birth in the U.S., their children would be U.S. citizens. It’s available in 19 states and Washington, D.C.

Texas is one of six states that also put legal permanent residents on this coverage.

CHIP covers routine prenatal checks and two basic postpartum visits to a doctor. It never covers specialty care.

“I think it’s fair to say that [women on perinatal CHIP] may not be as fully evaluated. The coverage just isn’t as extensive,” says Lisa Hollier, MD, an obstetrician-gynecologist at the Baylor College of Medicine in Houston. Hollier, who runs a practice focused on low-income women, has also been leading the Texas task force that’s studying the reasons behind the state’s recent rise in maternal deaths.

“If you have a woman with cardiac disease and she has this type of coverage, that’s not going to cover an echocardiogram for her. It will cover the baby, but it will not cover her care,” says George Saade, MD, chief of obstetrics and maternal-fetal medicine at the University of Texas Medical Branch in Galveston.

“African-American women are more prone to having diabetes, preeclampsia, hypertension. If they don’t get appropriate care for these, they’re going to be at risk for mortality,” Saade says.

Calista told her doctors and midwives she was having bad headaches. Medical records show they assumed these were migraines because she reported having a history of those kinds of headaches. There’s no documentation in her medical records that any further investigation was done.

Headaches that don’t get better with medication can be a symptom of preeclampsia, but pregnant women are also more prone to headaches. This overlap makes it hard for health care providers to tell routine complaints from real peril.

In any given month, about 36,000 pregnant women in Texas are enrolled in perinatal CHIP. About 12,000 of them are in the U.S. legally and would have gotten full coverage under Medicaid if they lived in a different state, says Anne Dunkelberg, at the Center for Public Policy Priorities, a nonpartisan think tank based in Austin, TX.

Texas has more uninsured residents than any other state in the country — about twice the national average. The state never expanded its Medicaid program under the Affordable Care Act. It also has the most restrictive income cutoffs for Medicaid in the U.S. That leaves a lot of adults, and a lot of parents, without coverage, Dunkelberg says.

That means many low-income women are likely to go without health care before and soon after they have a baby. That makes it difficult to manage chronic diseases. Pregnancy then becomes a stress test for the body. And more women are failing it.

A recent study found that 1 in 10 pregnant women in the U.S. now has a pre-existing chronic condition like asthma, high blood pressure, diabetes, or an addiction to alcohol or drugs. That’s up 40% from just a decade ago. Women were more likely to be in poor health during their pregnancies if they lived in a rural area or were covered by Medicaid.

Catching an Elusive Killer

After Calista’s insurance changed, she continued her prenatal care at the Maple Women’s Health Center, which is affiliated with Parkland Hospital.

The hour roundtrip drive, coupled with the wait times, was a strain for Calista, who needed to be home to take care of Kareem.

When Calista failed her first glucose tolerance test, doctors urged her to come back immediately for the more accurate 3-hour check. Medical records note that she “refused” to take the test because it was hard to go that long without eating and she needed to be home to take care of her son. Finally, a doctor offered her some alternatives, like taking the test at a clinic that was closer to her home. She agreed. When she failed her 3-hour glucose test, 32 weeks into her pregnancy, doctors diagnosed gestational diabetes. It’s typically diagnosed between 24 and 28 weeks.

After learning how to manage it, though, medical records show Calista kept her blood sugar under excellent control by watching her diet. She never needed medication.

Gestational diabetes made her a high-risk patient, so she was transferred to Parkland’s Maternal-Fetal Medicine specialty clinic, where she was seen once a week.

Despite being high-risk, medical records show the clinics Calista attended at Parkland were not routinely doing tests that can sometimes give early warning signs that a pregnant woman’s health is in jeopardy.

Urine tests can sometimes spot protein leaking from the kidneys — a sign of preeclampsia. They’re also cheap. A routine urine check costs about $6. The Preeclampsia Foundation, a group that’s pushing for better detection and treatment of the condition, would like to see these checks done as a regular part of prenatal care. Preeclampsia is a leading cause of death in new mothers.

“It is a quick and inexpensive test that could uncover a problem,” says Eleni Tsigas, chief executive officer of the Preeclampsia Foundation.

But a new guideline, published in April, from the influential U.S. Preventive Services Task Force recommended regular blood pressure measurements, but not spot urine tests, to screen for preeclampsia in pregnant women.

Tsigas says a bigger issue in preeclampsia screening is relying on blood pressure measurement to spot it.

“There is a growing body of evidence that nurses, etc., are often taking blood pressure incorrectly and thus not getting accurate data upon which diagnoses should be made,” she says.

Calista’s blood pressure was recorded for some, but not all, of her prenatal visits, as it should have been, according to medical guidelines. When it was checked, it was normal, according to her medical records.

One study of prenatal care found about a third of women didn’t get their blood pressure checked at every prenatal visit. Nearly 13% of women never even got a single blood pressure check.

At a recent meeting of doctors and other experts who aim to find and prevent maternal deaths in the U.S., William Callaghan, MD, also weighed in on low-quality care for pregnant women.

“It’s cutting corners. If you cut corners and get away with it, you cut corners again,” says Elliott Main, MD, an OB/GYN who is medical director for the California Maternal Quality Care Collaborative. He was not commenting on the details of Calista’s care. “That’s a real phenomenon. We talk about it a lot.”

Parkland Hospital spokesman Mike Malaise said he could not discuss the specifics of Calista’s care, citing patient privacy laws. He said that patients with a baby on perinatal CHIP “would not be denied services due to an inability to pay.” The hospital said it provided $871.4 million in uncompensated care in 2016. “Treating the indigent and uninsured is both our statutory mandate and our stated mission,” Malaise wrote in an email.

Did Racial Bias Play a Role?

Though Calista wasn’t apparently getting routine blood pressure checks, she was tested several times for sexually transmitted diseases (STDs). Medical records show she was tested twice within a month for gonorrhea and chlamydia and HIV and twice within 2 months for syphilis. All the tests were negative.

Medical experts interviewed for this story say this kind of repeat testing would be unusual for someone Calista’s age and with her social history. Calista was married for almost 10 years, there’s no indication in her medical records of a prior history of STDs. But she was also dark-skinned and spoke with an accent.

These tests aren’t directly related to the cause of her death, but they may reveal something about how she was treated by the health care system.

Despite a blanket recommendation that all women be tested for sexually transmitted infections, studies show that black and Hispanic women are tested at higher rates than whites.

One study found that some of this testing, especially in women without symptoms or a history of STDs, may be the result of doctors making assumptions about their patients because of the color of their skin. It’s one of the many ways racial bias plays out in patient care.

“That’s such a pet peeve of mine,” says Louis, the University of South Florida maternal-fetal medicine specialist.

She says there are a couple of different reasons for this overtesting: “Some of it is racism. Some of it is a problem with the health care system. They focus on STDs so much because STDs have implications for the baby, but moms who have been in the ICU will tell you — they feel like there’s not enough focus on Mom,” she says.

Sarah Wiehe, MD, a pediatrician and public health researcher at the Indiana University School of Medicine in Indianapolis, combed through medical records to find patterns of STD testing among more than 23,000 young women treated during routine visits at 30 clinics in the Indianapolis area.

Among women who’d never had a sexually transmitted disease, Wiehe found young black women were nearly 3 times more likely to be screened for chlamydia than whites, even though they had not reported any symptoms of an infection. Women without health insurance or with public insurance were more likely to be screened than those who were on private insurance plans.

Wiehe says it’s a sign that doctors are making negative assumptions about their patients based on race and income. Wiehe’s study found testing rates varied by individual provider, meaning that only certain doctors were responsible for the trend.

Parkland Hospital did not respond to questions about its STD testing.

There are other signs of racial bias in Calista’s medical records. When she was admitted to Parkland to deliver Angelique, the obstetrician wrote in his notes — incorrectly — that she was “late to prenatal care.”

It’s also something medical professionals call a “dog whistle,” Louis says — a loaded phrase in a chart that signals something about a patient that only other doctors and care providers can hear.

Women who are late getting to a doctor when they’re pregnant are sometimes assumed to be ambivalent about their pregnancies or the health of their babies.

But Calista wasn’t late to care. She had changed providers midway through her pregnancy. The switch is only noted twice in medical records. Records show only one provider, a Parkland nurse, requested records from the clinic she was going to before she came to Parkland.

There’s no indication in her medical records anyone ever got them or reviewed them.

In the end, there might not have been any early signs that she was in trouble. All the symptoms of her crisis may have started only when she got home from the hospital. In fact, most who die of pregnancy-related disorders die after their babies are born.

For that reason, advocates are calling for more care in what the American College of Obstetricians and Gynecologists has called “the 4th trimester.”

‘She Was Motionless’

When Allen Johnson and his father, Fred Johnson, arrived at Baylor, Scott, and White to be with Calista, they were met by Jerry Carter, the hospital chaplain.

“This is not a good thing when you’re being met by the hospital clergy,” Fred says.

Sitting in the hospital’s chapel, bathed in the light of its fluorescent cross, Carter tried to make the situation clear.

“He said ‘Whatever was going on with Calista right now, it’s not good. She’s been treated for something quite serious.’ ”

Carter told them they wouldn’t be able to see Calista right away. He left, and two doctors came to speak with them. They recounted the seizure. Told them how her heart had stopped twice. The situation was critical.

“There appeared to be maybe 15 people or so, maybe more than that, working on her,” Fred says.

The hospital was performing something called a soft code. They were showing her family the end of their efforts to revive Calista. They performed CPR for a total of 25 minutes, trying to bring her back. There were no signs of life.

“She was gone,” Fred Johnson says. “She was gone.”

They asked Allen and his father to give them some time to clean up her body.

When they let the two men enter the room, Fred says they called Calista’s name and touched her to see if hearing familiar voices, the voices of people she loved, could somehow bring her back. They checked her pulse themselves. Maybe the doctors were wrong.

“She was motionless,” he says.

The hospital ordered an autopsy.

It found Calista died of a tear in her aorta, the largest blood vessel in the body. The tear was 4 centimeters, nearly 2 inches, and it was in a strange place — in her abdomen, near her bellybutton. When the aorta tears, it doesn’t usually do it there, according to a vascular specialist who examined her medical records.

In the end, she died because she bled to death. The medical examiner found more than 2,000 milliliters of blood in her body cavity, about half of what the body can hold.

It’s not clear what caused her aorta to tear in the first place.

Stephen Hastings, MD, a medical examiner for Dallas County, said it could have started as a small dissection, where the layers of the aorta start to peel apart and then finally burst open. Dissections are very painful. This tearing was what was likely causing her back pain in the days before her death.

Certain genetic conditions make it more likely to have aortic dissections, especially in pregnancy.

And pregnancy causes the connective tissues of the body to loosen and stretch, increasing the odds of a dissection.

“This really sounds like postpartum eclampsia,” says Megan Tracci, MD, a vascular surgeon at the University of Virginia who reviewed Calista’s medical records for this story.

“It’s rare, but 20% of people who have eclampsia, they didn’t have signs of it,” Tracci says. “It happens.”

Calista’s family now hopes other women, especially African-American women, will learn from her story.

“If you’re having these type of symptoms, make sure you get back to the hospital as quick as you can because this could be fatal,” Fred says. “You need emergency, and you need emergency right now.”

“If we can help to make it known, don’t take your life for granted,” Fred says. “People are dying, but they don’t have to die from this. This is heartbreaking.”

Fred says Allen has been riddled with questions and guilt since Calista died. What if he had stayed home that day? What if he had insisted she go to the hospital sooner? What if they’d never changed their insurance? What will happen to his children, now that they have to live without their mother?

“He holds that with him all the time,” Fred says. “It went from him leaving to go to work that morning, and within a few hours, she was gone. And no goodbyes. There was no time for goodbyes.”

Brenda Goodman produced this special report as part of a yearlong Reporting Fellowship on Health Care Performance sponsored by the Association of Health Care Journalists and supported by The Commonwealth Fund.