Getting To The Heart Of America’s Maternal Mortality Crisis

Photographs by Jim Barcus

Two doctors hover around Chereena Walker in the small exam room at Saint Luke’s Hospital of Kansas City, in Missouri, alternately asking questions about her health issues in past pregnancies. Walker has asthma and allergies, she’s sniffling beneath her cloth mask even now, and she has a heart defect called a patent foramen ovale (PFO).

From all the attention she’s getting, it might seem as if Walker has an urgent or complicated medical situation, but this care is all precautionary. A PFO is a small hole between the right and left ventricles that fails to close after birth. It is common—occurring in about 25 percent of people¹—and rarely causes concern. With Walker’s history, however, the doctors agree that it’s worth taking a look at an echocardiogram.

If she gets pregnant again, Walker, a thirty-three-year-old hospitalist and mother of two, wants a cardio-obstetric tag team such as this to be by her side. Black women like her are three times more likely to die in pregnancy, childbirth, and the postpartum year than White women—a gap that persists in the US regardless of income or education.²

Cardiovascular disorders are the leading cause of maternal mortality in the US, and Black women have higher rates of pregnancy-related heart attack, stroke, peripartum cardiomyopathy, and pulmonary embolism than White women, even when differences in age, health conditions, cesarean section rate, socioeconomic factors, and access to health care are taken into account.³

“As a woman of color, it’s scary to have a baby,” says Walker, who asked for this consultation in the Saint Luke’s Heart Disease in Pregnancy Program, one of the first cardio-obstetric clinics in the country. “Women of color just want to make sure their voices are heard.” She looks up at the doctors and adds, “Just know about it and take care of me.”

“That’s what we’re going to do,” Karen Florio, a maternal-fetal medicine physician, responds emphatically.

Walker has survived some frightening moments. In her first pregnancy a cold triggered an asthma exacerbation, and she ended up on a ventilator at twenty-five weeks. She developed the respiratory disease respiratory syncytial virus, commonly known as RSV, in her second pregnancy, which required a bout in the intensive care unit. Last year she needed a ventilator again when she got pneumonia although, thankfully, not COVID-19. That was a reminder of risks that could arise in a third pregnancy.

“It sounds like your episodes have been related to infection,” says cardiologist Laura Schmidt, codirector of the Heart Disease in Pregnancy Program with Florio. “If your asthma is well controlled, I think with close monitoring you can be OK.”

They discuss the option of daily aspirin to reduce the risk for stroke or preeclampsia, a condition that involves a sudden and dangerous rise in blood pressure in the second trimester, but Walker says that she has a sensitivity to aspirin. Still, after weighing the information, Schmidt declares, “Go ahead and get pregnant now.”

Even behind a cloth face mask, Walker’s smile is obvious: “That’s what I wanted to hear!”

A Dangerous Cascade

With growing recognition of the heart-related risks of pregnancy, cardio-obstetrics is emerging as a new multidisciplinary specialty—a link between cardiology and obstetrical care that experts say is crucial to the effort to reduce maternal mortality,⁴ as is a clearer understanding of cardiovascular events related to pregnancy. In December 2020 Saint Luke’s Health System launched the nation’s first prospective registry of cardiovascular disease in pregnancy in the US, starting with a pilot project in collaboration with Massachusetts General Hospital (MGH) in Boston.

The aim of the Heart Outcomes in Pregnancy Expectations (HOPE) Registry for Mom and Baby is to eventually enroll 1,000 pregnant or postpartum women with a cardiovascular disorder and to follow them for five years. As many as thirty-five medical institutions are expected to participate.

“Maternal death, particularly among Black women, is a crisis,” says Amy Sarma, a cardiologist with the Corrigan Women’s Heart Health Program at MGH. “We need to be rigorously studying it and changing our care in an evidence-based fashion.”

The US ranks highest for maternal mortality among eleven high-income countries,⁵ and the nation’s rate of maternal death rose from 2018 to 2019 despite efforts to reduce it.⁶

Although childbirth and its immediate aftermath pose a singular moment of danger, with the potential for hemorrhage or infection, women face a rising risk of cardiomyopathy after delivery that is less recognized. More than half of US maternal deaths that occur between six weeks and a year postpartum are due to cardiovascular disorders, according to the Centers for Disease Control and Prevention.²

Pregnancy-related heart problems often extend through a lifetime. In a 2021 statement, the American Heart Association cautioned that pregnancy complications such as preeclampsia, gestational diabetes, and preterm delivery are linked to later-life heart disease.⁷

Several of the physicians on the Saint Luke’s cardio-obstetrics team can relate to these stark facts in the most personal way. Florio was an athlete in high school and college and completed a full Ironman triathlon before becoming pregnant. Despite being in top physical shape, she developed preeclampsia at twenty-eight weeks of pregnancy. The condition can cause a dangerous cascade of health effects. Florio developed posterior reversible encephalopathy syndrome and liver damage and delivered her son at thirty-one weeks. Today she still has frequent episodes of heart palpitations—something she never had before becoming pregnant. The experience influenced her decision to not have another child. “Each episode of preeclampsia makes your heart worse,” she says.

Schmidt had twins, which places increased stress on the heart because of the greater rise in maternal blood volume during pregnancy. Cardiologist Anna Grodzinsky navigated type 1 diabetes during her pregnancy, another cardiovascular risk. She chose to have her second child via a gestational surrogate.

“We don’t know what the effects of pregnancy are on the heart, long-term. That’s one of the goals of the HOPE Registry—to gather that data so we can better counsel women about their risk,” Florio says. “People will ask me, ‘What’s this going to do to me in the future?’ ‘Will it wear out your heart quicker than if you hadn’t gotten pregnant?’”

She hopes to find the answers, both for herself and for her patients.

Tracking Cases

Florio’s office is adorned with a mix of the scholarly—framed diplomas, medical tomes, fat research binders—and the homey—family photos, children’s drawings, a fire engine–red retro minifridge and matching microwave. Above the door, a sign reads, “Welcome to the Room Where It Happens.”

On a Thursday afternoon in the cardio-obstetric clinic, Florio huddles in her office with Schmidt and maternal-fetal medicine physician Emily Williams before they stride together into exam rooms to counsel patients. They prefer this hands-on collaboration to the more traditional consults that occur among specialists based on case notes. Both patients and providers see the benefits of this real-time interaction, Florio says, as it breaks down the silos that too often form around medical specialties.

There’s an easy flow in their questions and a counterpoint in their intertwining perspectives, while a coordinating nurse takes notes on a computer nearby. Even if they can’t foretell the future, they can give their best advice for managing the known risks.

“Do you mind if I listen to your heart?” Schmidt asks Megan, a thirty-five-year-old patient. As the cardiologist unwraps the stethoscope from around her neck, all chatter in the exam room instantly stops.

Megan, fifteen weeks into her second pregnancy, has a genetic condition called hypertrophic cardiomyopathy, which causes a thickening of the heart. She found out about her risk after her father died suddenly at age fifty-four. The delivery of her first child, now a toddler, went fine, but she’s still worried about possible complications with this one.

“I don’t hear any obstruction at all. I’m hoping we won’t have any problems,” Schmidt says, adding that she is ordering an echocardiogram. “I don’t see any reason why you couldn’t have a normal delivery.”

At the end of the visit, Florio pitches the HOPE Registry. “We know that heart disease is the number one cause of death for pregnant women,” she says. “We are developing a database to study outcomes in women who have heart issues in pregnancy…. People like you are rare but high risk. It’s important for us to gather information on them so we can know how to better handle their care.”

Florio shares her personal history of preeclampsia; after her pregnancy she joined a national preeclampsia registry that tracks her long-term outcomes. “I actually think it’s really great,” Megan says of the cardio-obstetrics team and their research effort. She agrees to consider joining the registry.

The HOPE Registry is the first US-based registry of pregnancy-related cardiovascular disorders, but globally, two other registries have been collecting data: the European Registry of Pregnancy and Cardiac Disease (ROPAC) and the Canadian Cardiac Disease in Pregnancy Study (CARPREG). Both registries enroll women with preexisting cardiac conditions, most of which are congenital.

Yet patterns of care may differ significantly in the US, where about a third of women lack health insurance either in the month before conception or at two to six months postpartum.⁸ The HOPE Registry also can track regional differences. “A registry allows us to describe real-world patterns of care, which can guide us in how we can improve that care,” Grodzinsky says.

The coordinators of the HOPE Registry also seek a broad pool of patients beyond women with known, preexisting heart disease. “We now know that there are a lot of women who present for the first time [with cardiovascular disorders] during a pregnancy,” Sarma says. “The aim of the HOPE Registry is to also gain a better understanding of [outcomes in] these women without prior known cardiovascular disease.”

The COVID-19 pandemic revealed why it’s so important to get a complete picture of cardiovascular risk.

The COVID-19 pandemic revealed why it’s so important to get a complete picture of cardiovascular risk. At the University of Pittsburgh Medical Center (UPMC) Magee-Womens Hospital, obstetricians shifted some prenatal visits to telehealth, giving patients blood pressure devices for home monitoring. When nurses made postpartum calls a week or two after delivery, they asked patients to take their blood pressure and found unexpected cases of postpartum hypertension, says Alisse Hauspurg, a maternal-fetal medicine physician and founder of the UPMC Postpartum Hypertension Program.

In an early data analysis,⁹ 16 percent of women had a new elevated blood pressure and 5 percent were eventually diagnosed with new-onset postpartum hypertension (Alisse Hauspurg, UPMC Magee-Womens Hospital, personal communication, September 14, 2021). That was in addition to elevated blood pressure among women who had hypertensive disorders during pregnancy.

“There’s probably a lot of untreated high blood pressure in this period that we just don’t know about,” says Hauspurg, who is also an assistant professor of maternal-fetal medicine at the University of Pittsburgh School of Medicine.

At its most severe, untreated postpartum hypertension can lead to eclamptic seizures, heart failure, and stroke.¹⁰ Yet researchers still don’t fully understand what triggers hypertension risk in the postpartum period, Hauspurg says.

An Unrecognized Hazard

In the racial justice movement that rose as a cultural force in the summer of 2020, advocates spoke out for victims of police violence by exhorting crowds to “say their names.” Disparities in maternal mortality have triggered similar calls for racial justice; a leading coalition to combat maternal mortality is called the Black Mamas Matter Alliance. Yet anonymity shrouds most cases of Black women who die in childbirth or postpartum from preventable causes.

Tashonna Ward of Milwaukee, Wisconsin, is an exception. Stories of her death traveled from the local news¹¹ to national outlets,^12,13 highlighting the cardiac risks that linger beyond pregnancy. In March 2019 Ward’s baby died during delivery when the umbilical cord became wrapped around its neck. The pregnancy itself had taken a toll on Ward, leading to another tragedy ten months later: In January 2020 she died from cardiomyopathy while waiting for emergency care at Froedtert Hospital. She was twenty-five. Doctors previously had told her that she had developed an enlarged heart during her pregnancy, according to a report in the Milwaukee Journal-Sentinel.¹¹

When she went to an emergency department with chest pain and shortness of breath, her heart rhythm was normal, although a chest X-ray showed the enlargement. As she sat in pain for two and a half hours in the emergency department’s waiting area, she grew increasingly upset. She left to go to an urgent care center but collapsed when she arrived and ended up heading back to the hospital in an ambulance. She became unresponsive and could not be revived.¹⁴

Ward’s case sparked conversation about emergency department response times, but it also highlighted the risks of delayed or inadequate care in the postpartum period. Symptoms of heart disease—extreme fatigue, shortness of breath, chest pain—are sometimes dismissed as signs of the stress of new motherhood, with its sleepless nights and emotional strain.

About one-third of pregnancy-related deaths occur one week to one year postpartum,² yet as many as 40 percent of women skip their postpartum visit, according to the American College of Obstetricians and Gynecologists (ACOG).¹⁵ ACOG endorses a “fourth” trimester that emphasizes postpartum care.¹⁵ The American Heart Association’s heart health initiative, Go Red for Women, notes, “Heart disease is the No. 1 killer of new moms.”¹⁶

“Pregnancy is a stress test,” says Rachel Bond, system director of the Women’s Heart Health Program at Dignity Health in Arizona and cochair of the Cardiovascular Disease in Women and Children’s Committee of the Association of Black Cardiologists. “It’s really a window for us to determine what our future risk of any complications may be when it comes to cardiovascular disease.”

Women and their physicians are often unaware of the cardiovascular risks of pregnancy.

Yet women and their physicians are often unaware of the cardiovascular risks of pregnancy. In a 2014 Women’s Heart Alliance online survey, only one in five US women knew that pregnancy complications can lead to later cardiovascular risks, and only 39 percent of physicians named heart disease as a top concern for women, even though it is their leading cause of death.¹⁷

Women and health care providers in seven countries have limited knowledge about the link between hypertensive disorders of pregnancy and long-term cardiovascular risk, according to a 2019 systematic review of studies published in Frontiers in Cardiovascular Medicine.¹⁸

In a May 2021 report, a Lancet commission on women and cardiovascular disease sounded an alarm about gaps in care: “Cardiovascular disease in women remains understudied, under-recognised, underdiagnosed, and undertreated.”¹⁹ The commission highlighted the need for more research into the cardiovascular risks associated with pregnancy, including a weakening of the heart muscle that can occur up to five months after delivery. “Peripartum cardiomyopathy is an important cause of maternal death that is under-recognised and seldom recorded as a cause of maternal death,” the commission said, and it called for large-scale, multicenter prospective registries and randomized controlled trials to explore the mechanisms of and effective treatments for peripartum cardiomyopathy.¹⁹

A Simple Question

Florio is chair-elect of the Missouri Pregnancy-Associated Mortality Review Board, which analyzes each death of a woman in pregnancy, in childbirth, or within a year postpartum. In 2017 a quarter of these women died from cardiovascular disease, and the review board concluded that 80 percent of maternal deaths overall could have been prevented.²⁰ (In a sign of broader societal trends, more than half of the pregnancy-related deaths in 2018 involved opioids or other substance use, the review board found.)

In some of the postpartum deaths, women had tried to get care when they felt their heart racing or their chest tightening in pain. “What we see is that they bounced between [emergency departments],” Florio says.

Medical costs are one potential barrier to care. Although the American Rescue Plan Act of 2021 makes it easier for states to extend Medicaid for up to a year postpartum with federal matching funds, action varies greatly among states. As of September 30, 2021, only about two dozen states and the District of Columbia had taken steps to extend coverage beyond the sixty-day period required by the Centers for Medicare and Medicaid Services, according to a tracking project of the Kaiser Family Foundation. That includes Missouri, where extra postpartum coverage only covers women with substance use disorder.²¹

(As part of the pandemic response, Congress prohibited states from disenrolling women at sixty days postpartum. Nationally, women whose pregnancies were covered under Medicaid now remain enrolled until the pandemic emergency ends.²² The Build Back Better Act, still pending in Congress as of early November, would require all states to provide twelve months of postpartum coverage for pregnant women enrolled in Medicaid or the Children’s Health Insurance Program.²³)

From the eastern edge of Missouri, Washington University in St. Louis cardiologist Kathryn Lindley sees similar scenarios of women with untreated cardiac symptoms, many of them among women who live just across the Mississippi River from St. Louis in Illinois. Lindley, who serves on the Illinois Maternal Mortality Review Committee, recalls analyzing some postpartum cases of women who sought emergency care when they became short of breath but were sent home with a diagnosis of respiratory infection and a prescription for antibiotics.

“A lot of these women had presented more than once or twice with the same complaint. Finally, they just dropped dead at home or they were so sick that they came to the hospital and they could not be revived,” says Lindley, who also is involved with the HOPE Registry.

One particularly heartbreaking element of this kind of review work is the sense of lost opportunity. Lindley and others point to an effective yet neglected intervention that is also easy and basic: a simple question that could save lives. At Saint Luke’s it pops up on the computer screen during triage when a woman of childbearing age arrives at the emergency department: “Is she pregnant or was this woman pregnant in the past six weeks?” If the answer is yes, the evaluation broadens. For example, high blood pressure would trigger an alert, as that could be a sign of pregnancy-related hypertensive disorder.

The Alliance for Innovation on Maternal Health, a patient safety initiative of state-based teams and partnering organizations coordinated by ACOG, recommends such screening in its “Cardiac Conditions in Obstetrical Care” patient safety bundle, which was released in August 2021.²⁴

Strategies To Boost Survival

Maternal mortality reviews have highlighted the need for other “red flags.” Important warning signs emerged from a 2017 analysis of maternal deaths in California, including this case: Ten days after she delivered, a twenty-five-year-old Black woman came to an urgent care clinic in California complaining of fatigue and a persistent cough. Fatigue sounds normal for someone caring for a newborn, and the woman, who was obese, was given an antibiotic for a respiratory infection. A week later, still feeling the same symptoms, she returned and received a different antibiotic and medication for “new-onset asthma.”

Two days later she went into cardiac arrest and died.

In retrospect, a review committee found there were danger signs, including risk factors (her race and obesity), vital signs (her oxygen saturation was just 94 percent and she had a rapid heartbeat), and symptoms (fatigue, difficulty breathing).²⁵

The California Maternal Quality Care Collaborative created a task force in 2014 to look for commonalities in past maternal deaths that could point the way toward prevention. The task force developed an algorithm for Cardiovascular Disease Assessment in Pregnancy and Postpartum Women that would have identified about 93 percent of the women who died as at high risk for cardiovascular disease, based on a review of sixty-four maternal deaths from cardiovascular disease during 2002–06.²⁵

“A large number of these women had a good chance of surviving had they been diagnosed in a timely manner,” says Afshan Hameed, a maternal-fetal medicine physician and cardiologist at the University of California Irvine and chair of the California Maternal Quality Care Collaborative Cardiovascular Disease in Pregnancy and Postpartum Task Force.

Every pregnant and postpartum woman should be screened and should learn about risk factors, Hameed says.

Hameed and colleagues are now validating the screening tool for cardiovascular risk in pregnancy and postpartum. Every pregnant and postpartum woman should be screened and should learn about risk factors, Hameed says: “The number-one element of any of these preventive strategies is awareness.” The team is working to widely disseminate this information, with the goal of making cardiovascular screening a part of routine pregnancy care, she adds.

Data collected by the HOPE Registry will eventually contribute to risk assessment models. “We’ve had a lot of media attention to maternal mortality in the past few years. We’re really trying to provide a clinically actionable solution to address this,” says Grodzinsky, the Saint Luke’s cardiologist.

‘I Just Want To Make Sure I’m OK’

Emily Hogan, twenty-three, is twenty-nine weeks into her first pregnancy and feeling good. So it seems surprising, even to her, that she would be sitting in a cardio-obstetrics clinic at Saint Luke’s, with her husband slumping quietly and pensively in a chair in the corner.

A few years ago she went to a doctor for bronchitis and found out that she had a heart murmur. An echocardiogram revealed that her aortic heart valve only has two leaflets, or flaps, instead of the usual three. (Two are fused together instead of separate.) Such a bicuspid aortic valve is the most common congenital heart defect, found in 1–2 percent of people and more often in males than in females. Although it can go undetected for years or even a lifetime, the differently shaped valve can stiffen or leak a backflow of blood.

Combining pregnancy with a heart disorder, even a mild one, calls for extra care. The cardio-obstetrics team gives their best estimates of the likelihood of complications.

With the bicuspid valve, Hogan has a score of 0 on the CARPREG scale, based on the Canadian registry, Schmidt says. That’s the lowest level, indicating that her risk of complications is 5 percent. The Saint Luke’s team is also caring for a forty-three-year-old woman who has a blocked artery and two previous heart attacks, yielding a CARPREG score of 5 and a 41 percent risk of encountering problems during pregnancy or delivery.

“I looked at your echo. It looked good,” Schmidt tells Hogan. “There was mild narrowing of the aortic valve. We do know that when you have two leaflets instead of three leaflets, there’s just more wear and tear across that valve.”

Still, Hogan gets the news she wants to hear. “You should be able to deliver at term, and you should be able to deliver vaginally,” maternal-fetal medicine doctor Williams reassures her.

“I just want to make sure I’m OK and healthy for the baby,” Hogan says. Then she agrees to join the registry in the hope of helping cardiologists and obstetricians learn more about how pregnancy affects cardiovascular risk.

Hogan gave birth to a healthy girl about ten weeks later. Her delivery was uneventful, but her experience will contribute to the broader goal of reducing the tragedy of maternal deaths.

NOTES

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