Just a few years ago, maternal mortality was the rare reproductive justice issue that seemed to transcend partisan politics. In late 2018, Republicans and Democrats in Congress even came together to approve $60 million for state maternal mortality review committees (MMRCs) to study why so many American women die from causes related to pregnancy and childbirth. Donald Trump—not exactly famous for his respect toward pregnant women and new mothers in his personal life—signed the bill.

But some Republicans’ enthusiasm for these committees began to wane at around the same time abortion rights advocates began warning that draconian restrictions on reproductive care would only push the shamefully high US maternal mortality rate—the worst among affluent countries—even higher. Nor did conservatives, like Idaho lawmakers, appreciate the policy recommendations that came out of many MMRCs.

Texas, whose record on maternal mortality (and maternal health more broadly) has been an embarrassment since long before Dobbs, has a history of controversial attempts to play down potentially unwelcome findings from its MMRC. After the Dobbs decision, when the state committee was working on its report examining maternal deaths in 2019, Texas officials decided to slow-roll its release until mid-2023—too late for lawmakers to act on its recommendations. “When we bury data, we are dishonorably burying each and every woman that we lost,” one furious committee member told the Texas Tribune. Ultimately, officials released the report three months late, in December 2022. Soon afterward, the Legislature reconfigured the MMRC, increasing its size—but also ejected one of its most outspoken members. 

Now Texas officials have stirred up the biggest furor yet, appointing a leading anti-abortion activist to the panel. Dr. Ingrid Skop, an OB-GYN who practiced in San Antonio for 25 years, will join the MMRC as a community member representing rural areas (even though she is from the seventh-largest city in the US). But she also represents a largely overlooked segment of the anti-abortion movement: researchers who seek to discredit the idea that abortion restrictions are putting women’s lives in danger. To the contrary, Skop and her allies argue that abortions are the real, hidden cause of many maternal deaths—and that abortion restrictions actually save mothers’ lives.

One of several doctors suing to revoke the Food and Drug Administration’s approval of mifepristone, the medication abortion drug at the center of one of this term’s blockbuster Supreme Court cases, Skop has been a familiar face on the anti-abortion expert-witness circuit for more than a decade. She has frequently testified in favor of strict abortion bans in court cases, state legislatures, and before Congress. In a high-profile case this winter, she submitted an affidavit stating that a Dallas woman named Kate Cox— who was seeking a judge’s permission to terminate a nonviable pregnancy—did not qualify for an abortion under Texas’s medical exception. The Texas Supreme Court rejected Cox’s petition, and to get medical care, the 31-year-old mother of two had to flee the state. Apparently, Skop’s hard-line stance against abortion-ban exemptions extends to children. At a 2021 congressional hearing, she testified that rape or incest victims as young as 9 or 10 could potentially carry pregnancies to term. “If she is developed enough to be menstruating and become pregnant, and reached sexual maturity,” Skop said, “she can safely give birth to a baby.”

Skop’s relatively new role as vice president and director of medical affairs for the Charlotte Lozier Institute, the research arm of Susan B. Anthony Pro-Life America, has solidified her standing in the anti-abortion firmament. Lozier, which has positioned itself as the anti-abortion alternative to the Guttmacher Institute, described Skop’s role as “coordinat[ing] the work of Lozier’s network of physicians and medical researchers who counter the abortion industry’s blizzard of misinformation with science and statistics for life.” Elsewhere on its website, Lozier notes that Skop’s “research on maternal mortality, abortion, and women’s health has been published in multiple peer-reviewed journals.”

What her Lozier bio doesn’t mention is that three of the studies Skop co-authored about the purported risks of abortion were retracted by their publisher this February. Attorneys representing Skop and her fellow anti-abortion doctors had cited the studies in the FDA-mifepristone case. As my colleague Madison Pauly reported, an independent review of the papers found “fundamental problems,” “incorrect factual assumptions,” “material errors,” “misleading presentations,” and undisclosed conflicts of interest between the studies’ authors (including Skop) and anti-abortion advocacy groups (including Lozier). In a rebuttal on its website, Lozier called the publisher’s move “meritless,” adding, “There is no legitimate reason for [the] retractions.”

Skop’s work on maternal mortality hasn’t received the same attention as those papers—yet. But her reflections on maternal deaths in the US have raised plenty of eyebrows.

Skop has argued repeatedly that abortions are directly and indirectly behind the rise in maternal mortality in the US. In a 53-page “Handbook of Maternal Mortality” she wrote for Lozier last year, she says that CDC maternal mortality data can’t be trusted in part because “there is much unreported maternal mortality and morbidity associated with legal, induced abortion, often obscured due to the political nature of the issue.” She claims that a history of abortions puts women at risk in pregnancy, childbirth, or during the postpartum period—whether from maternal complications she contends are linked to prior abortions, or from mental health problems, such as drug addiction and suicide, purportedly caused by abortion regret. 

In another paper co-written with some of the same co-authors as in her retracted studies, Skop and her colleagues call for an overhaul of how states and the CDC collect maternal mortality data, urging the inclusion of “mandatory certification of all fetal losses,” including abortions.

And whereas the vast majority of public health experts predict that maternal deaths and near-deaths will increase in states with abortion bans, Skop takes the opposite view. In yet another Lozier paper, she lists 12 reasons why states with abortion bans will have fewer maternal deaths. For instance, she argues, because of abortion restrictions, women will have fewer later-term abortions, which tend to be more dangerous to women than first-trimester procedures. (In fact, researchers report, that state bans have led to an increase in second-trimester abortions.) She claims that since women who don’t have abortions won’t have mental health problems supposedly associated with pregnancy loss, their alleged risk of postpartum suicide would be reduced. (In fact, the idea that abortion regret is widespread and dangerous has been thoroughly debunked.) Skop makes a similar argument about abortion’s purported (and disproven) link to breast cancer, arguing that fewer abortions will mean fewer women dying of malignant tumors.

Much of Skop’s advocacy work has been done in collaboration with colleagues who share her strong ideological views. MMRCs, by contrast, have a public health role that is supposed to transcend politics—their focus is on analyzing the deaths of expectant and new mothers that occur within a year of the end of the pregnancy. Typically, committee members come from a wide range of professional backgrounds: In Texas, these include OB-GYNs, high-risk pregnancy specialists, nurses, mental health providers, public health researchers, and community advocates. Panels also aim to be racially and geographically diverse, the better to understand the communities—Black, Indigenous, rural, poor—where mothers are at disproportionate risk of dying. In a country that hasn’t prioritized maternal health, MMRCs are uniquely positioned to identify system failures and guide policy changes that can save lives.

Texas’s most recent maternal mortality report found that 90 percent of maternal deaths were preventable, racial disparities in maternal outcomes weren’t improving, and severe childbirth complications were up 23 percent—all before the state’s abortion bans took effect.

It remains to be seen how someone with Skop’s background and agenda will fit in with her new colleagues, especially at this dire moment for women in the state. Maternal health advocates aren’t optimistic: “This appointment speaks volumes about how seriously certain state leaders are taking the issue of maternal mortality,” Kamyon Conner, executive director of the Texas Equal Access Fund, told the Guardian. “It is another sign that the state is more interested in furthering their anti-abortion agenda than protecting the lives of pregnant Texans.”

Skop, contacted through Lozier, didn’t respond to a request for comment. In a statement to the Texas Tribune, Skop said she was joining the Texas MMRC because questions about maternal mortality data deserve “rigorous discourse.” “There are complex reasons for these statistics, including chronic illnesses, poverty, and difficulty obtaining prenatal care, and I have long been motivated to identify ways women’s care can be improved,” she said. “For over 30 years, I have advocated for both of my patients, a pregnant woman and her unborn child, and excellent medicine shouldn’t require I pit one against the other.”

Meanwhile, the American College of Obstetricians and Gynecologists criticized Skop’s appointment, asserting that members of any maternal mortality review committee should be “unbiased, free of conflicts of interest and focused on the appropriate standards of care.”

“The importance of the work done by MMRCs to inform how we respond to the maternal mortality crisis cannot be overstated,” the group said in a statement. “It is crucial that MMRC members be clinical experts whose work is informed by data, not ideology and bias.”

Anna Jarvis, who launched the Mother’s Day movement in 1908 in honor of her own remarkable mother, would have had very complicated feelings about what the day has become, says Katharine Lane Antolini, associate professor of American history at West Virginia Wesleyan College and author of Memorializing Motherhood: Anna Jarvis and the Struggle for Control of Mother’s Day. Jarvis’ vision was childlike in its sentimentality, Antolini says: “To her, this was supposed to be the one day out of the year when you were just grateful for your mother.” But there was nothing sentimental about the way she fought to preserve that vision, whether she was battling the floral industry, Big Candy, or well-intentioned maternal health charities and the powerful people who supported them. I spoke with Antolini from her campus office in Buckhannon, West Virginia, about 40 minutes from the International Mother’s Day Shrine and Jarvis’ childhood home.

How did the idea of a day to honor mothers become such a focus of Anna Jarvis’ life?

The story of Mother’s Day really goes back to her mother, Ann Reeves Jarvis, who was a well-known social activist and community organizer during her time. They lived in the part of Virginia that split off during the Civil War to become West Virginia, part of the Union. Mrs. Jarvis had 13 children, only four of whom lived to adulthood. Anna, who was born in 1864, was the oldest surviving daughter. She never married or had children. She was never a mother herself. And that, I think, is an important part of her story.

In the 1850s, before Anna was born, it was very common for mothers in this part of Appalachia to die in childbirth and for babies to die. Poor sanitation was a major cause of death. Mrs. Jarvis organized what she called Mothers’ Day Work Clubs, where women would come together to educate themselves on issues of sanitation: what to do with sewage, where to put your outhouse so it wouldn’t contaminate your water supply or the milk from your cows. If there was a mini epidemic, they would help quarantine a family, bring them food, and help care for the sick. Mrs. Jarvis believed in a proactive kind of motherhood—in the book, I refer to it as “social motherhood,” where being a mother does not just mean taking care of your own children. You are caring for your community of children. By the time of the Civil War, these clubs were so well known that, according to local legend, a Union colonel asked Mrs. Jarvis if she could help the Union camps stop the outbreaks of disease that were killing so many soldiers. So, according to the story, Mrs. Jarvis organized mothers to help care for and stop the spread of diseases in the camps. 

Fast forward to the 1870s. Anna Jarvis is 12 years old. She’s standing outside a room where her mother is teaching one of her famous Sunday school lessons on mothers of the Bible. According to Anna, at the end of the lesson, Mrs. Jarvis offers a prayer of hope that somebody someday will create a day to honor mothers for their service. And as Anna tells it, her mother’s prayer sticks in her head. Thirty years later, in May 1905, Mrs. Jarvis dies in Philadelphia, where she had been living with Anna and two of her other children. And Anna decides, I’m going to dedicate my life to promoting my mother’s vision of a day honoring mothers. 

It’s such a noble idea. And yet, from the beginning, there was real tension about whose vision of motherhood was being honored. As it turned out, Anna and her mother probably would have had very different ideas of what Mother’s Day should be.

Mrs. Jarvis saw motherhood as a community responsibility. She envisioned a Mother’s Day when women would come together as mothers and be of service to each other. 

Anna Jarvis was not a mother. So she didn’t see motherhood through the same lens that her mother did. She saw motherhood through the eyes of a child. When you’re a child, the only mother you care about is your own. So Anna Jarvis’ Mother’s Day was very sentimental. It wasn’t a day to celebrate all mothers, it was a day for you to celebrate your mother—the mother as the center of a child’s world.

People ask me all the time, where do you put the apostrophe? Is it singular or plural? Anna’s idea was for a Mother’s Day, possessive singular. Her mother’s vision was more like Mothers’ Day—possessive plural. 

Anna Jarvis was obsessed with turning Mother’s Day into a movement. But she was also obsessed with having it be her movement. 

When Anna created her day, it was the second Sunday in May, because that was the closest Sunday to the anniversary of her mother’s death [on May 9]. She picked her mother’s favorite flower, the white carnation, as the symbol of the holiday. Her whole identity was wrapped up in this day. So, then, it had to be celebrated from the perspective of a daughter honoring a mother, not of a mother honoring motherhood. How did she think you should celebrate? You go home, like a Thanksgiving Day for mothers. If you can’t go home, you write or later, you call.

By 1912, Anna incorporated herself into the Mother’s Day International Association, which she ran out of the house in Philadelphia that she shared with her unmarried brother and sister. She copyrighted the phrases “Mother’s Day” and “second Sunday in May” and the white carnation emblem, and she included warnings in her association documents that she would legally protect her copyright from infringement. This was a single woman creating something for herself at a time when independent women were not common. And she became well known, even internationally known. This movement became a big part of her identity, which made her fiercely defensive of it.

How quickly did her Mother’s Day movement take off? And how did she react when it happened? 

By 1912, most states recognized Mother’s Day in some way. Anna did it by constantly writing letters and reaching out—she wrote to every state governor, to charities, to the editor of Ladies Home Journal, even to Teddy Roosevelt. It’s a huge campaign, very successful. 

Then in 1914, Woodrow Wilson signed a proclamation to make Mother’s Day a national day of observance. It was technically a flag resolution, all it asked everybody to do was hang a flag outside their house or on public buildings in honor of mothers. So as a concept, Mother’s Day entered the public domain. But to Anna, it was always her holiday. She copyrighted it. Oh, it made her so pissed off when anybody claimed that Woodrow Wilson was the founder of Mother’s Day. She would say, “All he did was sign it. I did all the work.” 

So then Anna began fighting to protect her day. She threatened lawsuits. She had battles with industries that were trying to commercialize her idea– the floral industry, the greeting card industry, the candy industry. The floral industry would hike the price of carnations up every Mother’s Day, which she hated so much. 

World War I began in 1914, and the US entered the war in 1917. How was Mother’s Day exploited then? 

Mother’s Day quickly became part of the war propaganda effort. The military used it to reach out to mothers.“You’re a good mother if you raise your son to be willing to fight.” Then to their sons: “Go fight to make the world safe for democracy, to keep your mother safe.” There was a huge campaign to get soldiers to write home on Mother’s Day. The military would actually provide cards to get the soldiers to do it.

One of Anna’s big fights was with a group called American War Mothers, which was founded to support the war effort, then pivoted to helping veterans as well as widows and mothers who were left with nobody to care for them. During the 1920s, they started using Mother’s Day as a fundraising device, selling carnations. Anna’s response was, “You don’t have permission to use my day. You don’t have permission to use my carnations. How dare you?” At one point, she crashed their annual meeting and was arrested for disturbing the peace. 

Her problem with charities was that she didn’t believe the money they were raising was going to the people who needed it. There was no transparency. She used to refer to charities as “Christian pirates” or the “expectant mother racket.” 

But what also really bothered her was how these charities seemed to violate the idea of Mother’s Day as she had envisioned it. To her, this was supposed to day of gratitude and respect. Not a day to feel sorry for mothers, not a day to try to rescue them. Her feeling was, you can pity mothers any other day. This is the day to just celebrate them.

One of Anna’s strangest battles is with maternal health charities—the kind of groups that her own mother would have supported and celebrated in her version of Mothers’ Day.

In 1933, during the Depression, the US Senate amended the original Mother’s Day resolution, asking that people donate to charities. Instead of just honoring your own mother and hanging a flag, let’s help mothers and families in the midst of this economic crisis where there was no male breadwinner or the father was dead. That opened the floodgates. Every charity that could tie Mother’s Day to their organization tried to do so. And Anna was outraged. 

One of the groups she went after was the Golden Rule Foundation, which promoted what was known as the Forgotten Mothers campaign to help poor women, including in Appalachia, where Anna was born. Where’s all this money going? she wanted to know.

Another was the Maternity Center Association, which was based in New York City and very focused on the idea of improving maternal mortality and health. Maternal deaths were still extremely high in the 1930s and the MCA was trying to address that problem in an era when you weren’t even supposed to say the word “pregnancy” in public, on the radio, or in print. MCA trained public health nurses and nurse-midwives. They also had classes on nutrition and prenatal and postnatal care. At first, their funding came from the federal government, but when that program dried up in 1929, they needed to raise money to get their message out. Mothers’ Day was perfect for that—to get around Anna’s trademark, they moved the apostrophe in the name. There’s a great quote from a magazine article at the time that summed up their sentiment: “Women are dying, and we’re giving them potted plants.” 

They had a lot of very big-name supporters, like Eleanor Roosevelt and Frances Perkins [the Secretary of Labor, the first woman cabinet secretary, and a major architect of the New Deal]. Eleanor Roosevelt didn’t understand why Anna was so mad at her: “We’re promoting your day!”

Nonetheless, she accused the First Lady of “grand larceny of human reputation and achievement” for using her day in a manner Anna never intended. She often complained about Mrs. Roosevelt’s support of the charitable campaigns in telegrams to FDR. She even wrote Frances Perkins demanding that she resign; Anna accused her of using federal funds to support the MCA’s ability to steal the holiday.

How could Anna Jarvis have argued with the mission of saving mothers’ lives?

Some of it definitely was her ego. Some of it went back to Anna saying, Can we just have one day when we just love mothers and thank them? On this one day, do we have to upbraid women and tell them they’re not good enough mothers because they’re not educated enough, because they don’t see a doctor? She hated the idea that Mother’s Day came with conditions, or pity because you’re poor or uneducated. She wanted the message to be, unconditionally, “You’re a good mother.”

Her own mother would have loved what the Maternal Center Association was doing—educating and empowering mothers to survive childbirth and keep their children alive. 

Over the years, she had so many fights, with so many powerful people—some women and a lot of men. How did they react?

Powerful men would say, well, she’s just crazy. And Anna definitely was intense. At one time she had over 30 lawsuits pending, according to a Newsweek article. But calling women crazy is historically how we’ve always dismissed them. She was an independent woman trying to carve out her life for herself and protect her intellectual property. I’ve got to admire her spunk. She would stand toe to toe with anyone. There wasn’t a man or a woman she was afraid of.

So what happened to Anna Jarvis? How did her battle over Mother’s Day end? 

Her battle ends because she just couldn’t fight it anymore. It took everything out of her emotionally and physically—and financially. When the brother she lived with died in 1926, she inherited his money and used it to fund her work. But eventually it was gone. I have never come across anything that suggests that Anna Jarvis ever profited from Mother’s Day financially. 

A Newsweek article from 1943 detailed her stumbling into a Philadelphia hospital, emaciated and sickly. She ended up in a sanitarium, like a nursing home. Her younger sister, who had been living with her, didn’t want to leave their house, and two months later she was found dead in the kitchen. Supposedly it was so cold that there were icicles hanging from the ceiling. Anna died in 1948 and was buried next to her mother, brother and sister in Philadelphia. 

What would Anna think of Mother’s Day, or Mothers’ Day, today?

Anna would not be happy with the commercialization of it, but she would have approved of the more sentimental part of it: “Don’t shame me because all I want to worry about is my mother.” 

And what do you think of it?

I’m surprised the day is not being used more for progressive movements. Maybe we should shame people for only caring about their own mothers. Especially in this environment. Maybe we really need to start worrying about all mothers. I live in a state with no abortion rights. I teach 19-year-olds who want to be mothers someday, but we don’t protect maternal health. I worry about my students. I worry about their futures. 

It’s hard to think of a piece of progressive American health care policy since the late 1970s in which Rosenbaum hasn’t played a pivotal role conceptualizing, enacting, or improving. That includes the federal statute that guarantees the right of every American to go to a hospital emergency room and receive medical treatment before being sent somewhere else. The Emergency Medical Treatment and Labor Act requires hospitals to screen and stabilize anyone who arrives at the emergency room, including women in active labor. Narrow in scope yet vast in impact, the law has been a “force field around hospital emergency departments,” Rosenbaum says, protecting pregnant patients for four decades. Now, with the Dobbs decision, SCOTUS has “blown up medical care for childbearing people,” she says—and EMTALA could be the next major health care protection that the court decides to explode.   

To more fully understand the implications of the case before the Supreme Court, we reached out to Rosenbaum to discuss the history of this unique statute and why it has become even more vital since the end of Roe v Wade. 

You’ve called EMTALA “revolutionary” and “the most important American health care law that we have.” Why? What makes this law so special? 

It’s the only American law we have that guarantees access to care. For everybody. It doesn’t matter who you are—whether you have insurance or don’t have insurance, what color you are, how much money you have, whether or not you’re disabled. If you come to a hospital emergency department and you believe you have an emergency, they have to screen you. If it is an emergency, they have to stabilize you. The definition of an emergency isn’t that you’re in danger of dying; it includes situations that could lead to severe, long-lasting physical harm. And the decision about what is required to stabilize you—it’s up to the doctor’s medical judgment. 

I would say EMTALA is really our only universal health care law. 

This law is from 1986. What was happening in the ’70s and ’80s that made EMTALA seem so necessary?

A few things were going on. Back in the early ’80s, a decision was made that the United States was spending too much on hospital care. So Congress changed the payment structure for Medicare [the single largest payer for health care services in the US] to incentivize shorter stays. Pretty soon there were stories emanating from the press about a phenomenon they called “sicker and quicker,” where patients who actually had been admitted to the hospital were getting discharged too soon, when they were still unstable. 

Another major problem was that indigent people were not able to get emergency care at all. There were a lot of stories of women being sent away in labor—not just pregnant patients, although that was the story that got the most play. In those days, many fewer women were eligible for Medicaid than are today and it wasn’t as generous. Only very, very indigent women could get Medicaid coverage.

Later in the 1980s, you also helped persuade Congress to vastly expand Medicaid for pregnant women, making it a federal requirement.

There’s no question that poor people bore the brunt, but they were not the only ones. For example, one of the most famous EMTALA cases from that period involved a patient with HIV—nobody would touch him. There have been many cases of fully insured people who, for whatever reason, hospitals just chose not to treat. People who were in a drunk driving accident and were out of control, for example, or mental health patients who were disruptive. Even if the patient was well insured, if they were a handful they would get sent over to the public hospital. 

Hospitals are very good at getting rid of people they don’t want. And so, while indigent people were the immediate focus, there’s nothing in EMTALA that limits it to uninsured people. That’s the important thing.

Tell me about one of your pregnancy cases from this era. 

One of the cases I worked on in the mid-’70s involved a Black woman named Hattie Mae Campbell who went into premature labor at her home near Holly Springs, Mississippi. She had Medicaid, but the local hospital refused to treat Medicaid patients. The baby was coming out. And the nurse stood at the door of the hospital with her arms spread wide, blocking the entrance, refusing to let her set one foot inside, because once a patient crossed over the line, there were legal arguments to be made that the hospital had begun the admission process. So she gave birth in the parking lot.

And we know that after the birth, the staff still refused admission. They provided a sheet to wrap the baby, then they transferred Campbell and her newborn to another hospital 30 miles away. How much of a factor was racism in these situations?

Race is always a factor—a combination of racism and the fact that people of color were even more poorly insured than white people. 

Were there regional differences in how patients were being treated?  

There were hospitals all along the Texas-Mexico border that would dress up [security] guards as immigration officials. They would station personnel at the door so you couldn’t come in. But this was going on everywhere. Rich states, poor states, affluent communities, not-so-affluent communities, racist communities, not-such-racist communities. It was happening everywhere because [private] hospitals felt that public hospitals or community hospitals should take care of patients they didn’t want. 

You should understand that hospitals were set up to accept only the patients they want. That has been tempered a bit. In the case of emergency care, they can’t do that anymore. But it hasn’t changed that much. A hospital might want me for elective surgery but not my neighbor down the street who’s a Latina who has Medicaid coverage. I mean, they have all kinds of ways to avoid patients they don’t want, right? The type of insurance they take, the doctors they give admitting privileges to, deciding what networks to be part of.

That’s why EMTALA was enacted using Medicare, which is a national program, as the stick. If you as a hospital want to participate in Medicare, and you run an emergency department, then you must do these things as a condition of participation.

Even despite all these horror stories, I still have a hard time imagining how you and other public health advocates managed to get EMTALA passed.

There was no resistance in Congress. None. A Republican Senate, a Democratic House, virtually identical language in both bills. Signed by Ronald Reagan. It really was a different era in the life of the United States. 

And then what happened? 

Oh, then there was huge hospital resistance. Even though hospitals were very involved in designing EMTALA, it’s a pretty heavy-duty regulation. Over the years, there’s been a lot of resistance both to the requirement that hospitals have to do an initial screening and to the requirement that they have to stabilize the patient before discharging or transferring. There have been thousands of EMTALA cases. The federal government has brought them, private individuals have brought them. 

There was a lot of resistance from attending doctors as well. The very first enforcement action was a birth case out of Texas. An OB-GYN who was supposed to be on-call went duck hunting, and when the hospital got a call that a woman had presented in labor, he said, basically, “I’m not coming in for her.”

In 1989, the language of the statute was tweaked to clarify that EMTALA didn’t just apply to the pregnant person, but also to the “unborn child.” Nowadays that goes right to the “personhood” argument of abortion opponents—indeed Justice Alito invoked it during oral arguments. Why was that language necessary then and how is it different from how it is being deployed today? 

Because women were still giving birth in parking lots. Women in labor were still being spurned. That language is in there because women who literally had babies coming out of them were being sent away. Everybody understood that you had two medical crises going on here, the crisis of the mother and the crisis of the baby. Everyone, apparently, except the noncompliant hospitals. The concern was not just the pregnant woman, the way it is with some of the emergencies we’re hearing about post-Dobbs, where the fetus is utterly non-viable and the focus is rightly on the pregnant woman. 

So the language was clarified: The baby was also a patient. Here on Planet Earth, there are two concerns in labor and delivery, the mother and the baby.

Was there any worry that at some point in the future, anti-abortion people might point to that language and say, as Idaho and Texas are arguing now, “See, EMTALA actually means we can’t do abortions because we have to care for the unborn child”? 

That really was not ever the intent. No, no, no, no. We didn’t put that language in there because we were suddenly creating embryonic fetal rights. It’s just a complete misunderstanding of EMTALA.

The pro-choice world crabbed about the language but didn’t fight it tooth and nail because everyone understood the context was labor and delivery. And they were going to lose that [battle]—no member of Congress was willing to listen to nonsense at that point about “clean up your language.” I’ve litigated abortion cases since the Hyde Amendment [the 1976 law banning the use of federal funds for abortion under most circumstances], and I was completely not troubled by that language. 

Was it always understood that in some situations, EMTALA might require doctors to do emergency abortions?

This issue of abortion as an emergency procedure has been grounded in EMTALA for a long, long time. There were already cases in the early ’90s of women coming to the hospital with a terrible pregnancy emergency where an abortion had to happen. Or they’d had an abortion that failed, or an incomplete miscarriage that needed an abortion procedure. So this issue [of whether EMTALA requires hospitals to perform emergency abortions] is not new. What’s new is Dobbs. What’s new is what the Supreme Court unleashed when it overturned Roe v Wade.

Pregnancy-related complications that might lead to emergency abortions—for example, when the embryo implants in the fallopian tube instead of the uterus, or when a woman’s water breaks too early for the fetus to survive—are a lot more common than many people realize. But pregnant people end up in the emergency room for all kinds of other reasons, too. 

Pregnant people are frequent users of emergency departments. About one in 500 pregnancies goes to an emergency department at some point. Most of the attention has rightly been placed on emergencies where something terrible has happened to the pregnancy itself. But there’s a whole other group of emergencies that aren’t pregnancy-related—it could be appendicitis, it could be a car accident, it could be domestic abuse, it could be COVID. 

The tendency when somebody is pregnant is to send them to the emergency department right away because you don’t want to take any chances. And sometimes in these situations, you need anesthesia, you need surgery. Sometimes, unfortunately, as a consequence of treatment you may have a demise. What Idaho has done is to make every pregnant person coming to an emergency department radioactive. 

As someone who has spent your whole career steeped in health policy and health law, did you see this moment coming? When hospitals turn away pregnant patients with life-threatening emergencies? When a law as important as EMTALA seems on the verge of being gutted?

It was very evident, from the moment that the Dobbs decision was leaked, that there was just a total, fundamental clash between what states like Idaho with these terrible abortion bans thought they had the license to do and what EMTALA required. 

When the Dobbs decision finally came down, my daughter called, incredibly upset. All of her friends were incredibly upset. I said, “Here’s my one piece of advice. You have friends all over the country. The ones who live in any one of the states that are going to impose a complete ban, tell them that they must not get pregnant. And if they do want to be pregnant, they must move away. Because a lot of things can go wrong in a pregnancy, and if anything goes wrong, they’re not going to be able to get emergency care.” 

The other thing that I realized right away is that it would be impossible for doctors to practice in these places, and there would be a huge exodus of providers. And in Idaho that has happened. So people like me, who are steeped in health policy, understood immediately what was coming. But where we are now is worse than I could have even imagined it was going to be. 

This conversation has been edited for clarity and length.

Overwhelmed, Jaelyn begged the doctor, “Can we just get it over with?” Meaning: Could they do a procedure to hasten the inevitable and terminate a pregnancy that was no longer viable and could only lead to more unnecessary suffering? But the doctor told her no. “We cannot assist in it, we have to wait until the baby’s heart stops.” The nursing staff hooked Jaelyn up to a fetal monitor. She and her husband spent the next eight hours watching the machine as their son’s life ebbed away. When there was no longer a heartbeat, the doctor finally intervened.

It’s a scenario that has become horrifyingly common in conservative states since the end of Roe v Wade. Near-total bans on abortion have made it almost impossible for doctors to terminate pregnancies in an emergency, even when the mother’s life is in danger or there’s no chance the fetus will survive. As lawyers for Idaho face off against the Biden administration over the federal statute that requires hospitals to treat and stabilize any patient experiencing a medical emergency, the downstream consequences of pregnant women being denied necessary care are at the heart of what could be the most significant reproductive rights ruling from the Supreme Court since Dobbs.

Jaelyn wasn’t from Idaho or Texas; she lived in a city in the liberal Northeast. The hospital where she went for emergency care wasn’t being forced to comply with a draconian state ban dreamed up by anti-abortion lawmakers; it was a Catholic provider, obliged to follow Catholic teachings even when they conflicted with reproductive protections enshrined in state law. Her story highlights a largely overlooked aspect of the SCOTUS fight over the federal Emergency Medical Treatment and Labor Act (EMTALA). The decision won’t just affect the ability of red states to regulate medical care for pregnant patients. It also has enormous ramifications for a health care sector that is heavily concentrated in blue states with strong abortion protections: Catholic hospitals.

Catholic systems make up the largest group of nonprofit health care providers in the US, caring for one in seven hospital patients every day and accounting for 17.5 million emergency room visits a year. According to the watchdog group Community Catalyst, about 16 percent of acute-care hospitals around the country are Catholic. But in some states, Catholic providers account for a much bigger share of the health care infrastructure, including in such reproductive safe havens as Washington (almost 50 percent), Colorado (around 40 percent), and Oregon and Illinois (about 30 percent each).

Those hospitals—as well as their clinics, pharmacies, and physician practices—follow the Ethical and Religious Directives for Catholic Health Care Services, issued by the US Conference of Catholic Bishops, which ban or limit abortion, contraception, sterilization, fertility treatments, trans care, and physician-assisted suicide. Under the ERDs, Catholic hospitals—even in liberal parts of the country—have long treated pregnancy emergencies in ways that have become chillingly familiar in abortion-ban states. For decades, Catholic hospitals have been “doing as a norm what has now become the post-Dobbs landscape,” Georgetown Law professor and reproductive justice scholar Michele Bratcher Goodwin told my Mother Jones colleague Pema Levy. A SCOTUS decision in favor of Idaho could “further weaponize the arguments used by Catholic hospitals to deny emergency care,” Goodwin warns.

The ERDs ban “direct” abortions, which are defined as any procedure that intentionally results in the death of the fetus. At the same time, the directives do permit “operations, treatments, and medications that have as their direct purpose the cure of a proportionately serious pathological condition of a pregnant woman.” Or, as the Catholic Health Care Leadership Alliance summarizes in an amicus brief in the Idaho case, “medical treatments to save the life of the mother that unintentionally cause the death of the unborn child are permitted.”           

How this plays out in Catholic hospital emergency rooms can get complicated, to say the least. Consider a relatively rare but devastating complication known as pre-viable PPROM, when the pregnant patient’s water breaks too early for the fetus to survive. According to leading medical groups such as the American College of Obstetricians and Gynecologists, the standard of care in such cases is to offer the patient a choice: She can wait and see if her condition improves long enough for the fetus to become viable, or she can receive treatment that amounts to an emergency abortion. Any delay in appropriate care can lead to the mother suffering agonizing pain, massive bleeding, and a potentially life-threatening infection.

By contrast, under the ERDs, Catholic providers are not allowed to terminate the pregnancy as long as the fetus is alive—even if it has no possibility of surviving—until the woman’s life is in danger, says Lori Freedman, a professor and researcher at the University of California, San Francisco, whose 2023 book, Bishops and Bodies: Reproductive Care in American Catholic Hospitals, is based on interviews with dozens of medical practitioners and patients. “They cannot treat her [with medications or procedures that will terminate the pregnancy], but watch her and wait for signs of infection to develop,” she says. “They have this requirement—if there is a fetal heartbeat, wait till there’s a threat to the mother’s life. Then they have to save her life. That is a low standard of care.”

Freedman notes that something very similar happened to Jaelyn, whose story she recounts in her book. In dire cases such as hers—which took place pre-Dobbs—the widely accepted standard of care is to terminate the pregnancy if the mother decides that’s what she wants. Instead, Jaelyn was forced to endure hours of agonizing physical pain as her baby slowly died; the emotional pain lasted much longer. “She really felt it to be torture,” Freedman says.

To be fair, Catholic providers often look for workarounds to get pregnant patients the care they need—for example, by sending them to another hospital. But depending on the circumstances, this could run counter to EMTALA’s requirement to provide emergency care, says Elizabeth Sepper, a University of Texas law professor who writes often about reproductive health care and religion. “It’s fair to say that Catholic hospitals have sometimes been violating EMTALA through transfers,” she says, “in ways that patients were probably not aware were caused by the religious identity of those institutions.”

Those hospitals have been able to get away with it because, even in states with strong laws ensuring reproductive access, religious providers are protected by what are known as “conscience” clauses sprinkled throughout numerous state and federal laws. The ACLU has sued Catholic hospitals at least three times in the past decade over their treatment of pregnant patients under the ERDs—and lost.

Now, in the EMTALA case, Catholics and other religious groups are raising the religious freedom argument in a new context. They claim that the Biden administration’s efforts to force hospitals to perform emergency abortions “violates the conscience rights” of providers who have “medical, ethical, or moral objections to the intentional killing of unborn children.” And they threaten that if the Supreme Court rules against the Idaho ban, the result would be “a regulatory domino effect” that would only add to the chaos for pregnant patients around the country. As their amicus brief states, “Over time, many…Catholic healthcare entities would feel pressure to opt out of programs covered by EMTALA so as to avoid the loss of medical licenses, the threat of crushing legal fines, and a hostile regulatory environment…It is hard to overstate the devastating impact that such a scenario would have on the delivery of health care in the United States.”

Meanwhile, the leading Catholic ethics organization advising health care providers has doubled down on its interpretation of the ERDs since the end of Roe. As evidence that Catholic providers can treat emergency pregnancy complications without resorting to abortion, the EMTALA briefs cite a commentary issued by the National Catholic Bioethics Center in August 2022. “When there is no moral certitude that the child has died, surgical abortion procedures of any type…are never permitted,” the NCBC says. Nor, according to the group, is it legitimate to induce labor before a fetus is viable merely because the mother-to-be suffers from a chronic condition such as pulmonary hypertension (a type of high blood pressure that affects the lungs) or cardiomyopathy (when the heart starts to fail) that happens to make her pregnancy exceptionally dangerous.

In cases of ectopic pregnancy—when the embryo implants outside the uterus, usually in the fallopian tube—the NCBC’s preferred approach is “expectant waiting” even though medical experts say any delay in surgery can lead to catastrophic bleeding. In the strange logic of the ERDs, it’s also acceptable to remove the entire fallopian tube, whether or not the embryo inside is still alive. What’s not permitted is any procedure or medication that destroys the living embryo while preserving the fallopian tube. Never mind that an embryo in a fallopian tube has zero chance of survival, or that the removal of the tube could have serious effects on future fertility. “It’s really shocking,” says Elizabeth Reiner Platt, director of Columbia Law School’s Law, Rights, and Religion Project, “that in defending their right to deny emergency stabilizing treatment and claiming that they have other protocols that work, their number one recommendation is to do nothing, and the next best option is a procedure that could reduce someone’s fertility for their entire lifetime when there’s an option that could preserve their fertility. I find that galling.”

To be clear, the conscience rights of religious hospitals aren’t the main focus of the Idaho EMTALA fight. But the Supreme Court’s ultra-conservative majority includes five Catholics—John Roberts, Clarence Thomas, Samuel Alito, Brett Kavanaugh, and Amy Coney Barrett—who have shown themselves to be very receptive to arguments about religious freedom. In this term’s other major abortion case, the conservative challenge to the FDA’s regulation of mifepristone, EMTALA came up repeatedly in oral arguments, Sepper points out. “It certainly does seem like it’s on their minds—how do the conscience protections and EMTALA interact? So I actually think that [the religious argument] will be top of mind even though it’s not really relevant to the legal conflict before them.”

According to the groundbreaking work of Dutch researcher Dr. Tessa Roseboom, the impacts of near starvation are also likely being experienced by generations not yet born. Roseboom, a biologist and professor of early development and health at the Amsterdam UMC/University of Amsterdam, has been studying the long-term consequences of prenatal malnutrition for almost 30 years.

Much of her work focuses on people like her parents, who were born around the time of the Dutch “Hunger Winter” at the end of World War II. In dozens of studies, Roseboom and her colleagues have provided some of the first direct evidence in humans of the intergenerational impact of in-utero exposure to stresses such as famine. Their work suggests that malnutrition during pregnancy can have lasting consequences not only for the future health of the child but for subsequent generations. “It’s one of the things that makes me very passionate to talk about how the decisions we make today will have an effect for many, many decades,” Roseboom says. “I really feel the generations before me urging me to speak out.”

Audio journalists Neroli Price, Salman Ahad Khan, and Gabrielle Berbey talked with Roseboom as part of their investigation into how Israel’s blocking of aid trucks carrying food and medical supplies is leading to a maternal and infant health disaster. Excerpts of their conversation can be heard on the latest Reveal radio episode, “In Gaza, Every Pregnancy is Complicated,” (available for listening on nearly 600 NPR stations or for download).  Given the timeliness and urgency of the subject, we are presenting a longer digital version here. 

Let’s start with the Hunger Winter. What was the confluence of events that made the winter of 1944-1945 so devastating for people in the Netherlands?

The Hunger Winter was a period of famine that occurred at the end of the Second World War, in the part of the Netherlands that had not been liberated by the Allied forces. [After the D-Day invasion in June 1944], the Allies liberated France and Belgium and retook the southern part of the Netherlands. The Dutch government-in-exile called for a railway strike to support the Allies, but the operation failed before they could retake the north and west of the country, which included the capital, Amsterdam. The German occupying forces retaliated for the railway strike by banning all food transports from rural parts of the country to urban areas. Suddenly, rations that had been around 2,000 calories a day during the entire war dropped to around 400 to 600 calories a day. Two slices of bread, two potatoes, and half a sugar beet was the typical ration for adults during that period.

The blockade coincided with a very early and extreme winter, which froze all the waterways in the Netherlands—and canals are an important way of transporting food. So it was really a combination of this harsh winter and the blockade that suddenly led to a very acute period of famine, which lasted until the Netherlands was liberated and the war ended, in May 1945.

How did that extreme level of famine affect mortality?

During the first six months of 1944, when there was sufficient food, mortality rates were half what they were in the first six months of 1945, during the famine period. It is estimated that a total of 25,000 people died during the Dutch Hunger Winter.

What do you know about what happened to your family during this period?

My father was born in the first weeks of the famine and my mother was born in the month after liberation, so they don’t remember anything of course. But my grandmothers remember what it was like to be pregnant during a war and during a period in which there was very little food available.

Luckily both my parents were born in the rural part of the country, where the famine was much less extreme. My father’s mother told me how she delivered my father at home when there was no light and bombings were going on. She told me how families from Amsterdam came fleeing to the part of the country where she lived, looking for food. Even though my father was only 10 weeks old, he was already heavier than the 10-month-old boy from Amsterdam.

When you began to study the broader effects of this famine, what did other people tell you?

Even though I spoke to them decades later, they still remember it as such a traumatic period. I remember one woman who was so undernourished after the birth of her first baby, she couldn’t breastfeed. She told me that her baby looked like a skinned rabbit– that’s how skinny he had become after a few days. So she went to church to try and find someone willing to take him because she realized, “He’s going to die if I keep him with me.” Luckily, someone helped her get milk and food, so she could feed herself and her baby. But she felt so guilty all her life that she had considered giving him away. It took her almost 50 years before she told her son this story.

You’ve authored or coauthored numerous papers about how the Hunger Winter affected the long-term health of people conceived or born during that period. What are some of the impacts you’ve found?

In almost three decades of studying men and women who were being shaped inside their mother’s womb during the Dutch famine, we know that the lack of nutrients left lasting marks on on the organs and tissues that were forming at the time.

The babies who were conceived during the famine and whose mothers were undernourished while their brains were being built—those brains were smaller. When those people were adults, their brains were wired in a different way. They were more susceptible to stress and addiction, their cognitive function was affected. They were less likely to participate in the labor market.

We found that babies who were conceived during the famine had a higher risk of depression in particular. They also had a higher risk of schizophrenia and antisocial personality disorders.

Their metabolism was altered as well. It makes a lot of sense that if you are taking in very few nutrients in utero, your body will develop a very, very efficient way of metabolizing the calories you do get. But then, because of your efficient metabolism, when food becomes more plentiful later in life, you have a higher risk of becoming obese. Our research found more obesity and Type 2 diabetes, higher cholesterol levels, and people developing cardiovascular disease at a younger age.

Were these effects immediately apparent when the Hunger Winter babies were born?

No. It’s fascinating, but based on the size of babies who were born just after the Dutch famine ended, one wouldn’t have thought that they were that much impacted. At birth, babies were not particularly small, particularly thin, or particularly any different from most babies. So for a long time, we thought maybe they’re not going to be affected by famine. They’re safe inside their mother’s womb. We shouldn’t be too worried.

But based on our research now, we know that the structure and function of their organs are different. And it’s only as we age that problems with our organs tend to arise as damage accumulates across the life course.

Separate from the effects of famine, did you find any impacts of maternal stress on babies during that period?

In general, [the fetus is] protected from the stress hormones that the mother has in her own bloodstream. But when women are undernourished, the enzyme in the placenta that protects the fetus from getting exposed to this stress hormone is not functioning properly anymore. So with high stress levels and low nutrition, the baby will get exposed to the stress levels that the mother is experiencing.

Your research didn’t stop with people born around the time of the Hunger Winter. You also studied their children. What did you find?

We saw that both through the mother and the father, these effects can be transmitted to future generations.

As a biologist, I often talk about the fact that each and every one of us, every human being, started as a single fertilized egg. But the egg that made you and me didn’t arise just before it was fertilized. It was actually formed when our mothers were in our grandmothers’ wombs. So the egg that made me was formed during the Hunger Winter.

Human beings are very sensitive to their environment, particularly in early life during development. And we know that the environment, whether it is nutrition or whether it’s a traumatic experience, has an impact on the expression of the genetic code—what we call epigenetic effects. The environment has a big impact on the extent to which your genetic potential is being expressed. The Dutch Famine Study, as well as other studies looking at other crises and catastrophic events—9/11, climate disasters such as flooding and fires—they’ve all consistently shown that there are epigenetic effects. Not so much of the DNA structure is changed, but the extent to which our genes are expressed is altered by the environment in which we grow and develop, and even these effects are transmitted from one generation to the next.

The blockade of food transports by the German occupying forces seems like a parallel to what’s happening in Gaza right now.

I think there is a strong parallel with what’s going on in Gaza. And because of the research I’ve done, I’m not worried only about the people currently experiencing the situation there. I’m very worried about the long-term consequences this will have for the generation that isn’t even born yet.

We’ve spoken with ob-gyns from Gaza who ran out of basic medical supplies to take care of women and babies back in October. How might that kind of collapse in the medical infrastructure affect fetal development?

I can only guess what the impact might be. Based on the studies that we’ve been doing on the Dutch famine, I have no proper comparison of the medical system collapsing because, quite surprisingly, during the war and the famine, the medical system continued to operate. Doctors and nurses continued to provide care and record details of the pregnancies that we’ve been able to see because these records were kept.

But based on other studies of disruptive situations, like flooding, that didn’t allow pregnant women to go to their doctors or midwives, we know that increases stress levels and has a negative impact on the development of the [fetus]. You can actually still see [this] in the way that their genes are expressed, in the way that these children develop, and in their risks of chronic diseases later in life.

I’m imagining a mother who is living through what has been happening in Gaza, who may be wondering if there was any way to protect her infant from those negative long-term effects.

It’s a very difficult question because during your time in the womb, your organs are formed and you cannot do that again. You cannot rebuild your brain. But the scientific evidence is quite clear that in terms of stress, the effects can be greatly reduced if people get social support. Even if you cannot get out of that stressful situation, getting social support can be very important in helping reduce the negative impact.

Another thing that people could do if they have been unnourished or have a child who is unnourished during pregnancy is to make sure they eat healthy diets and exercise as they grow up, which will help reduce the risk of developing cardiovascular disease or Type 2 diabetes.

If you could grab all the world’s leaders, and get on your soapbox, what is the one message you would tell them about mothers and babies and war and famine?

I’d say that we as human beings have all been shaped by the environment that our ancestors created. The world that we live in, the knowledge that we have access to, our societies, our cities, our families are shaped by those who came before us. What we do today is literally shaping the environment in which future generations will be allowed to develop to their full potential.

And these future generations are not some imaginary future creatures that are not around already. As I said before, the egg that made you and me was already there when our mothers were in our grandmothers’ wombs. The future generations are already here, in the present, and we are affecting them with our actions right now.

This interview has been edited for clarity and length.

Civil rights lawyer and reproductive justice pioneer Lynn Paltrow is one of the rare exceptions. “Maybe there’s something about being Jewish, and brought up on the knowledge of the Holocaust, that’s sensitized me to the possibility of the worst-case scenario being real,” she says from her home office in New York, taking a break from the book she’s been writing. With the Alabama Supreme Court’s ruling on IVF, Paltrow jokes that she finally has its title: I Told You So.

Paltrow began working on abortion cases as an intern with the ACLU Reproductive Freedom Project in the early 1980s; later she helped found what is now the Center for Reproductive Rights. But even as she was filing lawsuits and amicus briefs to defend Roe, she came to believe that her side’s single-minded focus on abortion was myopic and, she feared, potentially disastrous. In 2001, she founded National Advocates for Pregnant Women, taking up the types of issues that mainstream pro-choice groups were mostly ignoring—the policing of pregnancy, for instance, and the emerging threat posed by claims of fetal personhood. Though Paltrow stepped down from NAPW, now Pregnancy Justice, in 2023, she’s paying as close attention as ever to the many ongoing efforts to “deny women, and anyone with the capacity to be pregnant, of their personhood.” Whether the issue is mifepristone or fetal rights, the ultimate goal, she warns, is far more ambitious than banning abortion. It’s to “ensure male supremacy and a society in which men have certain roles and women have others.”

What was the first case you came across that made you start to understand the implications of the idea that a fetus is a separate legal person from its mother—and that pro-choicers should be focusing on pregnancy, not just abortion?

There were two cases. The first was the criminal prosecution of Pamela Rae Stewart in 1986. She was a poor white woman near San Diego whose baby was severely compromised and died five weeks after birth. One factor in the charges was that she had allegedly used criminalized drugs during pregnancy—marijuana and amphetamines. But the prosecutors ultimately admitted that was not the real reason for the case. Her real crime was not obeying her doctor’s orders. They said she hadn’t gotten early enough prenatal care; she didn’t take her prescribed medication; she didn’t get to the hospital quickly enough on the day of delivery—she started hemorrhaging and lost five cups of blood. My favorite—this is a quote from the prosecutors’ brief—was that she had “subjected herself to the rigors of sexual intercourse” on the day she gave birth.

It was the first time that most people had ever heard of a woman’s actions during pregnancy being policed and criminalized this way. It also showed how prosecutors could take existing laws that had nothing to do with drug use or pregnancy and twist them for their purposes. The California legislature had amended its murder laws in 1970 to allow homicide charges against someone who killed a fetus in the commission of a crime, but the statute was very clear that it could not be used in the context of abortion or against the mother. So instead of charging Pamela Rae with murder or manslaughter, prosecutors used a misdemeanor criminal child support law that required parents to support their children, including “children conceived but not yet born.” 

We got the trial court judge to dismiss it. It was an absolute victory for Pamela Rae Stewart. But very quickly there were scores of similar cases around the country that disproportionately targeted Black mothers, using laws written for another purpose, like charging women with child abuse or distributing drugs to a minor.

What was the second case?

It was just a year later, in 1987. Angela Carder was a young woman, confined to a Washington, DC, hospital with cancer—a tumor in her lungs the size of a football. She was also 26 weeks pregnant. The fetus was not viable, it was never going to live; the tumor had deprived it of oxygen for too long to survive. Her family wanted the hospital to keep Angela comfortable and alive for as long as possible. But the hospital called an emergency hearing to determine the rights of the fetus and obtained a court order for cesarean surgery. The baby lived for two hours; Angela for another two days.

Eventually, at the appellate level, we were able to get a decision that held, in effect, that women who become pregnant don’t lose their civil rights. But in a dissent, one appellate judge claimed that “the expectant mother,” because she has “undertaken to bear another human being” to the point of viability, places herself  “in a special class of persons.” And over the years there have been numerous cases—including forced c-sections, forced bedrest—in which other courts essentially say something very similar: We know we’re violating a woman’s rights, but this is different, she’s pregnant.

So, thinking about the slippery slope, my first two cases started at the bottom of it. No exaggeration, no hyperbole. The Pamela Rae Stewart case made me understand that claims of separate, legal personhood for an embryo or fetus could become a mechanism for policing half the people in the United States, the half that can get pregnant. And then the Angela Carder case made clear that it wasn’t simply that you could lose your physical liberty and go to jail. You could lose your right to life.

I associate these kinds of rulings with, say, Texas or Alabama. But this isn’t just happening in conservative states.

No! In a report last fall, Pregnancy Justice found nearly 1,400 cases of pregnancy-related criminalization across the US just in the past 16 years, including in New York. Even in California, after Pamela Rae Stewart’s case was thrown out, there were at least four other cases in which individual prosecutors brought charges to try to make a name for themselves. As recently as 2019, a woman was charged with murder after having a stillbirth that prosecutors claimed was caused by methamphetamine use. It wasn’t until 2022 that the California legislature finally passed a law that said you can’t do this.

Let’s be clear: Methamphetamine not only doesn’t cause stillbirths, it doesn’t even have a theoretical [physiological] pathway for causing stillbirths. Think about all people on Ritalin and other medications with the same chemical makeup as meth that do not cause stillbirths. If methamphetamine—or any of the criminalized drugs—were good at ending pregnancy, don’t you think we’d be shipping them to Texas and Alabama? It’s probably a hell of a lot easier to get methamphetamine in those places than it is to get mifepristone.

Beyond banning abortion, what do you think is the goal of people who argue for fetal personhood?

They claim it’s to “protect unborn life from its earliest stages of development.” But what I’m seeing—and this is the only thing that I think allows one to make sense out of all of the laws and policies that purport to regulate abortion and birth control and IVF—is that they are all mechanisms for ensuring a subordinate status for women and anybody who can become pregnant. That’s why I’ve started calling it the anti-abortion, pro-misogynist movement.

I hear people say all the time that the personhood movement wants to give the fetus more rights than the mother. No, it’s more rights than any living person. No living person has the right to require anybody else to undergo any health intervention on their behalf. No living person has a right to require another living person to give them blood or an organ. Even if it’s their twin sister, their mother, their father. But according to the personhood people, fertilized eggs, embryos, and fetuses have more rights than any living person because their existence could require women to literally die for them. Fetuses have rights even when they’re completely nonviable, as happened in the Angela Carder case.

How did the anti-abortion movement grab hold of the personhood idea? And how did criminalizing pregnancy become a key part of it? 

One of the foundations of Roe v. Wade was the conclusion that fetuses are not constitutional persons at any stage of development. Right after Roe came down, people on the [anti-abortion side] began strategizing: What can we do to challenge that holding? 

There were proposals to amend the US Constitution to have the unborn declared full persons under the law, which ultimately failed. There were a few state ballot measures that also mostly failed. Instead, the strategy that proved to be most effective was injecting into every possible law the idea that constitutional personhood begins at conception and that fetuses should be viewed as separate and independent from their mothers. For example, laws that made the killing of a fetus a crime. Or wrongful death laws that let a family sue if a pregnant person and her unborn child are killed in an accident.

I have never been able to find a deliberate strategy by [the anti-abortion] movement to connect personhood with the criminalization of pregnancy—at least, not at the beginning. Instead, it seemed like individual prosecutors picked up on the legal personhood arguments and found them irresistible. There was a huge drug war going on and they could not show any accomplishments in stemming the tide of drugs. But if they targeted pregnant women, lo and behold, they got national press. And they created the illusion that they were doing something about drugs.

Then anti-abortion groups saw what they were doing and understood that prosecuting women for allegedly harming their fetuses was consistent with their personhood playbook. And they could use these arrests and prosecutions to their advantage.

Even though these prosecutions were popping up all over the country, the higher courts were skeptical. When did that change?

For many years, at the appellate level, we were able to get courts to recognize that interpreting various state laws—like laws against the delivery of drugs to a minor—to prosecute women was a violation of legislative intent. And they would throw the cases out. Then came the Cornelia Whitner case in South Carolina in 1997.

She was a Black mother who gave birth to a healthy baby who tested positive for cocaine. She was arrested under the state’s child endangerment and neglect laws. Her court-appointed lawyer had just left the prosecutor’s office—as far as she was concerned, this was a legitimate prosecution. She advised Cornelia to plead guilty in the hope of getting some kind of treatment, which is an extremely naive position because there’s basically no drug treatment available for pregnant women or mothers. Instead, Cornelia got eight years in jail. There was absolutely no legislative history to support the interpretation of the child abuse law in the context of pregnancy. But, to me shockingly, the state supreme court ruled in favor of the prosecution. I should never have been shocked. We then had a lot of cases arguing that other states should treat Whitner as an outlier. And we were successful—for the next 15 years, courts in other places continued to throw out these cases.

Until prosecutors in Alabama started charging women with chemically endangering their fetuses, under a felony law that was passed to protect actual children from meth labs.

When the Alabama cases started happening, we knew we were going up against an incredibly conservative state supreme court. We had no illusions about the outcome, and we were right. In 2013, the Alabama Supreme Court ruled that the state’s meth lab law could be used to prosecute people for substance use in pregnancy. To get there, they dismissed the many other rulings around the country that they disagreed with and singled out the Whitner case as supporting the idea that women could, and should, be prosecuted.

What was different was the broader goal. The South Carolina court was focused on the case in front of them—the crack baby hysteria. They didn’t say “Roe v. Wade was decided wrongly.” The Alabama ruling was very much part of a broader agenda to explicitly attack and eventually overturn Roe. A whole string of Alabama cases built on each other, trying to make arguments for personhood by mischaracterizing many areas of the law, from inheritance laws to torts like wrongful death. The IVF decision is part of that series of cases.

Do you think people on the abortion rights side have been slow to understand the threat posed by personhood?  

I was disappointed by the lack of any kind of national feminist outcry at the Whitner decision. It had the effect of seeming to endorse an idea of legal personhood for viable fetuses. I’ve seen this happen in many other cases—there’s a legal argument or even a ruling that seems so narrow or outlandish that the pro-choice side doesn’t bother to push back. When we fail to respond—to offer an ideology that values the personhood of women and people who get pregnant—we go one more step backward.

What do you think accounts for this pro-choice blind spot?

A few things. There are a lot of silos. For much of the past 50 years, the mainstream pro-choice groups were focused almost exclusively on the right to abortion. Although as individuals, they understood that right as representing much more than a single medical procedure, there was no campaign to explain abortion as necessary to the full equality and citizenship—the personhood—of women in this country. They were defending abortion as opposed to the people who sometimes need abortions but always need to be treated as full constitutional persons under the law, whatever the outcome of their pregnancies.

Even on the pro-choice side, a lot of people thought of pregnancy and abortion as two different things. Years ago, when I was at National Advocates for Pregnant Women, I was invited to talk at a prestigious public health school. One of the people who invited me was a bioethicist I’d worked with years before.  In anticipation of my talk, she called and asked, “What made you change from working on abortion to working on pregnant women?” I was like, “You know you don’t need an abortion unless you become pregnant…?”

And then many people working on abortion issues felt that connecting the protection of the right to abortion to drug policy issues was incredibly dangerous for their cause. I understand that. But, the fact is, they were being linked by the right. Refusing to respond to that connection ended up keeping our side extremely vulnerable.

Did people on the pro-choice side also tend to believe that some of the decisions happening in, say, Alabama were so far out on the fringe that they wouldn’t have any real influence?

People have a hard time believing that the worst and the craziest can happen. The ongoing willingness to say, “Oh, that’s just Alabama” is extremely dangerous. There are judges in New York who have reached very similar kinds of decisions.

If you could single out one effort the repro-justice movement could make to protect the personhood of women, what would it be?

We have to have a 50-year plan that includes the development of arguments about women’s rights to conscience that articulates the moral injury they suffer when they are denied the right to abortion, and when they face penalties for any outcome of their pregnancies. It cannot just be the defense of a procedure. We will never ensure a national system of health care that includes all the health care that women need if we don’t make this a fight about the status of women as free and equal citizens.

This interview has been edited for length and clarity.

When police discovered the woman, she’d been dead at home for at least 12 hours, alone except for her 4-year-old daughter. The early reports said only that she was 42, a mammogram technician at a hospital southwest of Atlanta and almost certainly a victim of COVID-19. Had her identity been withheld to protect her family’s privacy? Her employer’s reputation? Anesthesiologist Claire Rezba, scrolling through the news on her phone, was dismayed. “I felt like her sacrifice was really great and her child’s sacrifice was really great, and she was just this anonymous woman, you know? It seemed very trivializing.” For days, Rezba would click through Google, searching for a name, until in late March, the news stories finally supplied one: Diedre Wilkes. And almost without realizing it, Rezba began to keep count.

The next name on her list was world-famous, at least in medical circles: James Goodrich, a pediatric neurosurgeon in New York City and a pioneer in the separation of twins conjoined at the head. One of his best-known successes happened in 2016, when he led a team of 40 people in a 27-hour procedure to divide the skulls and detach the brains of 13-month-old brothers. Rezba, who’d participated in two conjoined-twins cases during her residency, had been riveted by that saga. Goodrich’s death on March 30 was a gut-punch; “it just felt personal.” Clearly, the coronavirus was coming for health care professionals, from the legends like Goodrich to the ones like Wilkes who toiled out of the spotlight and, Rezba knew, would die there.

At first, seeking out their obituaries was a way to rein in her own fear. At Rezba’s hospital in Richmond, Virginia, as at health care facilities around the U.S., elective surgeries had been canceled and schedules rearranged, which meant she had long stretches of time to fret. Her husband was also a physician, an orthopedic surgeon at a different hospital. Her sister was a nurse practitioner. Bearing witness to the lives and deaths of people she didn’t know helped distract her from the dangers faced by those she loved. “It’s a way of coping with my feelings,” she acknowledged one recent afternoon. “It helps to put some of those anxieties in order.”

On April 14, the Centers for Disease Control and Prevention published its first count of health care workers lost to COVID-19: 27 deaths. By then, Rezba’s list included many times that number — nurses, drug treatment counselors, medical assistants, orderlies, ER staff, physical therapists, EMTs. “That was upsetting,” Rezba said. “I mean, I’m, like, just one person using Google and I had already counted more than 200 people and they’re saying 27? That’s a big discrepancy.”

Rezba’s exercise in psychological self-protection evolved into a bona fide mission. Soon she was spending a couple of hours a day scouring the internet for the recently dead; it saddened, then enraged her to see how difficult they were to find, how quickly people who gave their lives in service to others seemed to be forgotten. The more she searched, the more convinced she became that this invisibility was not an accident: “I felt like a lot of these hospitals and nursing homes were trying to hide what was happening.”

And instead of acting as watchdogs, public health and government officials were largely silent. As she looked for data and studies, any sign that lessons were being learned from these deaths, what Rezba found instead were men and women who worked two or three jobs but had no insurance; clusters of contagion in families; so many young parents, she wanted to scream. The majority were Black or brown. Many were immigrants. None of them had to die.

The least she could do was force the government, and the public, to see them. “I feel like if they had to look at the faces, and read the stories, if they realized how many there are; if they had to keep scrolling and reading, maybe they would understand.”

It’s been clear since the beginning of the pandemic that health care workers faced unique, sometimes extreme risks from COVID-19. Five months later, the reality is worse than most Americans know. Through the end of July, nearly 120,000 doctors, nurses and other medical personnel had contracted the virus in the U.S., the CDC reported; at least 587 had died.

Even those numbers are almost certainly “a gross underestimate,” said Kent Sepkowitz, an infectious disease specialist at Memorial Sloan Kettering Cancer Center in New York City who has studied medical worker deaths from HIV, tuberculosis, hepatitis and flu. Based on state data and past epidemics, Sepkowitz said he’d expect health care workers to make up 5% to 15% of all coronavirus infections in the U.S. That would put the number of workers who’ve contracted the virus at over 200,000, and maybe much higher. “At the front end of any epidemic or pandemic, no one knows what it is,” Sepkowitz said. “And so proper precautions aren’t taken. That’s what we’ve seen with COVID-19.”

Meanwhile, the Centers for Medicareand Medicaid Services reports at least 767 deaths among nursing home staff, making the work “the most dangerous job in America,” a Washington Post op-ed declared. National Nurses United, a union with more than 150,000 members nationwide, has counted at least 1,289 deaths among all categories of health care professionals, including 169 nurses.

The loss of so many dedicated, deeply experienced professionals in such an urgent crisis is “unfathomable,” said Christopher Friese, a professor at the University of Michigan School of Nursing whose areas of study include health care worker injuries and illnesses. “Every worker we’ve lost this year is one less person we have to take care of our loved ones. In addition to the tragic loss of that individual, we’ve depleted our workforce unnecessarily when we had tools at our disposal” to prevent wide-scale sickness and death.

One of the most potentially powerful tools for battling COVID-19 in the medical workforce has been largely missing, he said: reliable data about infections and deaths. “We don’t really have a good understanding of where health care workers are at greatest risk,” Friese said. “We’ve had to piece it together. And the fact that we’re piecing it together in 2020 is pretty disturbing.”

The CDC and the Department of Health and Human Services did not respond to ProPublica’s questions for this story.

Learning from the sick and dead ought to be a national priority, both to protect the workforce and to improve care in the pandemic and beyond, said Patricia Davidson, dean of the Johns Hopkins School of Nursing. “It’s critically important,” she said. “It should be done in real time.”

But data collection and transparency have been among the most glaring weaknesses of the U.S. pandemic response, from blind spots in the public health system’s understanding of COVID-19 in pregnancy to the sudden removal of hospital capacity data from the CDC’s website, later restored after a public outcry. The Trump administration’s sudden announcement in mid-July that it was wresting control over hospital coronavirus data from the CDC has only intensified the concerns.

“We’d be the first to agree that the CDC has been deficient” in its data gathering and deployment, said Jean Ross, a president of National Nurses United. “But it’s still the most appropriate federal agency to do this, based on clear subject-matter expertise in infectious diseases response.”

The CDC’s basic mechanism for collecting information about health care worker infections has been the standard two-page coronavirus case report form, mostly filled out by local health departments. The form doesn’t request much detail; for example, it doesn’t ask for employers’ names. Information is coming in delayed or incomplete; the agency doesn’t know the occupational status of almost 80% of people infected.

The data about infections and deaths among nursing home staff is more robust, thanks to a rule that went into effect in April that requires facilities to report directly to the CDC. The agency told Kaiser Health News that it is also “conducting a 14-state hospital study and tapping into other infection surveillance methods” to monitor health care worker deaths.

Another federal agency, the U.S. Occupational Safety and Health Administration, investigates worker infections and deaths on a complaint basis and has prioritized COVID-related cases about the health care industry. But it has suggested that most employers are unlikely to face any penalties and has issued only four citations related to the outbreak, to a Georgia nursing home that delayed reporting the hospitalization of six staffers and three Ohio care centers that violated respiratory protection standards. Of the more than 4,500 complaints OSHA has received about COVID-19-related working conditions in the medical industry, it has closed nearly 3,200, a ProPublica analysis found.

Data problems aren’t just a federal issue; many states have fallen short in collecting and reporting information about health care workers. Arizona, where cases have been surging, told ProPublica, “We do not currently report data by profession.” The same goes for New York state, though a report in early July hinted at just how devastating the numbers there might be: 37,500 nursing home employees, about a quarter of the state’s nursing home workforce, were infected with the coronavirus from March through early June. Other states, including Florida, Michigan and New Jersey, provide data about employees at long-term facilities but not about health care workers more broadly. “We are not collecting data on health care worker infections and/or health care worker deaths from COVID-19,” a spokesperson for the Michigan Health Department said in an email.

This problem is global. Amnesty International, in a July report, pointed to widespread data gaps as part of a broader suppression of information and rights that has left workers in many countries “exposed, silenced [and] attacked.” In Britain, where more than 540 medical workers have died in the pandemic, the advocacy group Doctors’ Association UK has begun legal action to force a government inquiry into shortages of personal protection equipment in the National Health Service and “social care” facilities such as nursing homes. And in May, more than three months after the first known medical worker’s death, the International Council of Nurses called for governments across the world to start keeping accurate data on such cases, and for the records to be centrally held by the World Health Organization. The WHO estimates that about 10% of COVID-19 cases worldwide are among health workers. “We are closely following up (on) these cases through our global networks,” a spokesperson said.

“Governments’ failure to collect this information in a consistent way” has been “scandalous,” said the council’s CEO, Howard Catton, and “means we do not have the data that would add to the science that could improve infection control and prevention measures and save the lives of other healthcare workers. … If they continue to turn a blind eye, it sends a message that [those] lives didn’t count.”

So regular people, like Rezba, have stepped up with their makeshift databases.

Rezba, 40, initially wanted a career in public health. While finishing her master’s degree at Emory University in Atlanta and for a few months afterward, she worked as a lab tech at the CDC, analyzing nasal swabs to track cases of MRSA, the flesh-eating bacteria. But she decided she cared more about people than bugs, so she headed to Virginia Commonwealth University medical school in Richmond, graduating in 2009 with plans to specialize in the treatment of chronic pain.

During her residency at VCU, her first rotation was in the neonatal intensive care unit. “There was a little baby I helped take care of for three weeks. And the very last day of that rotation, his parents withdrew care…He was the first little person I pronounced dead. I went and cried in the stairwell after that.” Her next rotation was in the burn unit, then the emergency department. “It seemed like death was just everywhere,” Rezba said. Witnessing it “is something very separate from the rest of your life experiences. People look different when they’re dying. It’s not like TV. They don’t look like they’re sleeping. CPR is pretty brutal. Codes are pretty brutal.”

She began keeping a list as a way to process the grief. “In residency, you record everything—your case logs, the procedures you do. It was just sort of second nature to record their names.” Whenever a patient died she would make another entry in her notebook, then “I would kind of perseverate”—ruminate—“over their names.” At the end of the year, she took the notebook to church. “I lit candles for them. I prayed. And then I let it go.”

A decade later, Rezba was working full time as an anesthesiologist and raising three small children, her list-compiling days long past her, she thought. Then COVID-19 hit. The onetime infectious disease geek became obsessed with the videos leaking out of China—the teams of health care workers in full protective gear, the makeshift wards in tents, the ERs in chaos: “I knew early on that this was going to be a big problem.” In her job, Rezba was often called upon to do intubations. “The possibility of not having enough PPE caused a lot of anxiety for her,” said her husband, Tejas Patel, whom she met in medical school. “She would be the one, if we did hit that level of New York, who could potentially be at risk and bring it home to the kids.”

As it turned out, Rezba’s hospital wasn’t inundated, nor did it experience the PPE shortages that plagued many health care facilities. But her anxiety didn’t disappear; it just took a new shape. If health care workers were front-line heroes, she decided, her role was to search the trenches for the bodies left behind.

Rezba is the first to admit she’s not great at technology; she rarely uses a computer at home. Patel discovered what she was doing because their iPhones and iCloud accounts are linked. “Whenever she saves a picture to the phone, I can see it. And I noticed a bunch of pictures of, you know, these strangers.” He remembered how, in their student days, Rezba had insisted on humanizing the cadaver in their anatomy lab: “It upset her that it was just this anonymous person. Knowing his birthday and little things like that would make her feel better.” Patel figured the photos were part of a similar coping strategy. “It wasn’t until much later that I found out she was putting them up on Twitter.”

Much of Rezba’s digging happens in the middle of the night, when she can’t sleep. She usually starts by Googling for local news stories; if she’s still not tired, she turns to the obituary site Legacy.com. The hunt for a person’s occupation and cause of death invariably takes her to Facebook, where she follows the trail to relatives and co-workers, to vacation slideshows and videos of old men serenading their grandkids on the guitar. Every few days, she checks GoFundMe, where she’s recently been struck by the number of people who linger for weeks or months before dying. She’s still discovering deaths that occurred in April and May. Anyone under 60 gets special scrutiny. “If the obit says, ‘They died surrounded by family,’ I usually don’t bother trying to find out more, because those people didn’t have COVID. The people with COVID are mostly dying alone.”

Doctors and nurses are the easiest to find. “If someone worked in the laundry service at the nursing home, the family doesn’t put that in,” Rebza said. Yet it’s the nonmedical staff that she feels a special obligation to uncover — the intake coordinators and supply techs, the food service workers and janitors. “I mean, the hospital’s not going to function if there’s nobody to take out the trash.” Every so often, a news story mentions that several staffers from a particular nursing home or rehab center have died, without mentioning their names, and Rezba feels the rage start to bubble. “What it comes down to is, these are people that are making $12 an hour. And they get treated like they’re disposable.”

If she can’t find someone’s identity right away, or if the cause of death isn’t clear, she’ll wait a couple of days or weeks and try again. Because she comes across them anyway, she’s started to keep track of other categories of COVID-19 deaths, like kids and pregnant women, as well as health care workers in their 30s and 40s who don’t appear to have the virus but suddenly perish from heart attacks or strokes or other mysterious reasons. “I have a lot of those,” she said.

Once she’s certain she’s found someone who belongs on her list, she selects a photo or two and writes a few words in their honor. Sometimes, these read like a scrap of poetry; sometimes, like a howl.

He enjoyed crazy-dancing at home to Bruno Mars, with the moves becoming wilder the more his family laughed.

As a child, she would wrap her clothes around Dove soap so they would smell like America.

This poor baby should have his mother in his arms. Instead he has her in an urn.

A preprint study out of Italy last week hinted at the kind of lessons researchers and policy makers might glean if they had more complete data about health care workers in the U.S. The study pooled data from occupational medical centers in six Italian cities, where more than 10,000 doctors, nurses and other providers were tested for coronavirus from March to early May. Along with basic demographic information, the data included job title, the facility and department where the employee worked, the type of PPE used and self-reported COVID-19 symptoms.

The most important findings: Working in a designated COVID-19 ward didn’t put workers at greater risk of infection, while wearing a mask “appeared to be the single most effective approach” to keeping them safe.

In the U.S., many medical facilities are similarly monitoring employee infections and deaths and adjusting policies accordingly. But for the most part, that information isn’t being made public, which makes it impossible to see the bigger picture, or for systems to learn from each other’s experiences, to better protect their workers.

Imagine all of the opportunities it would present if everyone could see the full landscape, said Ivan Oransky, vice president for editorial content at Medscape, where a memorial page to honor global front liners has been one of the site’s best-read features. “You could be doing some real great shoe-leather epidemiology…You could go: ‘Wait a second. That hospital has 12 fatalities among health care workers. The hospital across town has none. That can’t be pure coincidence. What did this one, frankly, do wrong, and what’s the other one doing right?’”

To Adia Harvey Wingfield, a sociologist at Washington University and author of “Flatlining: Race, Work, and Health Care in the New Economy,” some of the most pressing questions relate to disparities: “Where is this virus hitting our health care workers hardest?” Is the impact falling disproportionately on certain categories of workers—for example, doctors vs. registered nurses vs. nursing aides—on certain types of facilities, or in certain parts of the country? Are providers who serve lower-income communities of color more likely to become ill?

“If we aren’t attuned to these issues, that puts everybody at a disadvantage,” Wingfield said. “It’s hard to identify problems or identify solutions without the data.” The answers are especially important in Black and Latino communities that have suffered the highest rates of sickness and death—and where health care workers are themselves more likely to be people of color. Without good information to guide current and future policy, she said, “we could potentially be facing long-term catastrophic gaps in care and coverage.”

The near-term consequences have also been enormous. The lack of public data about health care workers and deaths may have contributed to a dangerous complacency as infections have surged in the South and West, Friese said—for example, the idea that COVID-19 is no more dangerous than other common respiratory viruses. “I’ve been at this for 23 years. I’ve never seen so many health care workers stricken in my career. This whole idea that it’s just like the flu probably set us back quite a way.”

He sees similar misconceptions about PPE: “If we had a better understanding of the number of health care workers infected, it might help our policymakers recognize the PPE remains inadequate and they need to redouble their efforts…People are still MacGyvering and wrapping themselves in trash bags. If we’re reusing N95 respirators, we haven’t solved the problem. And until we solve that, we’re going to continue to see the really tragic results that we’re seeing.”

The misconceptions appeared to stretch to the highest reaches of the federal government, even as infections and deaths started surging again. At a White Houseevent in July focused on reopening schools in the fall, HHS secretary Alex Azar told the people gathered, “health care workers…don’t get infected because they take appropriate precautions.”

Even some medical workers have continued to be in denial. A few days before Azar spoke, Twitter was abuzz over an Alabama nurse who worked the COVID-19 floor at a hospital by day and decompressed at crowded bars by night, where she often went maskless. “I work in the health care industry,” she was quoted as saying, “so I feel like I probably won’t get it if I haven’t gotten it by now.”

Piercing that sense of invulnerability—making the enormity of the COVID-19 disaster seem real—isn’t only Rezba’s mission. From The New York Times’ iconic front page marking the first 100,000 American deaths to the Guardian/Kaiser Health News project “Lost on the Frontline,” news organizations and social media activists have grappled with how to convey the scale of the tragedy when people are distracted by multiple world-shattering crises and the normal rituals for processing grief are largely unavailable.

“The point at which accountability usually happens is when our leaders have to reckon with the families of those who’ve been lost, and that has not happened,” said Alex Goldstein, a Boston-area communications strategist behind the wrenching @FacesOfCOVID Twitter account, which has posted almost 2,000 memorials since March. With COVID-19, “no one has had to look in the eye of a crying parent who wants to show you a picture of their child or listen to someone telling you about who their mom or dad was. There has been no consequence. What would our policy decisions have looked like if [the people making them] had to come face to face with that death and loss in a more visceral way?”

It’s a question that weighs especially heavily on health care professionals, who have seen, in the most visceral way possible, the worst that COVID-19 can do. Erica Bial, a pain specialist in the neurosurgery department at a Boston-area hospital, fell dangerously ill from COVID-19 in March, her respiratory symptoms lingering for more than six weeks. She lived alone and opted not to go to the hospital, in part because she worried about infecting other people. “At that point [in the outbreak], they would have intubated me, given me hydroxychloroquine and azithromycin and probably killed me.” As her recovery dragged on, she wondered how other doctors were faring: “I couldn’t believe that I was the only physician I knew who was sick.” But as she searched online, “I could not find any data. I just started getting really frustrated at the lack of information and the disinformation…And then I started thinking about, well, what happens if I die here? Will anybody know?”

Like Rezba, Bial has a background in public health; the Facebook page she created, COVID-19 Physicians Memorial, was an attempt to build “a network where there’s accountability. I wasn’t necessarily trying to create, you know, reverence or memorialization. I was trying to understand the scope of the problem.”

Rezba soon began posting memorials on the page; as it grew to include more than 4,800 members, Bial asked her to help moderate it. Among the things the two women share is a determination to stick to facts. “I didn’t want any politics and I didn’t want any garbage,” Bial said. “(Rezba) was 100% like-minded and trustable.” She was also someone Bial could talk to, doctor to doctor, as she recovered. “It wasn’t just two people obsessed with something kind of morbid,” Bial said. “She was a source of support.”

Emergency room doctor Cleavon Gilman also gained a following for his posts on Facebook, a diary about what he witnessed as an ER resident in the NewYork-Presbyterian hospital system, battling the virus as it engulfed Washington Heights. “It was just … overwhelming,” he recalled. “We were intubating 20 patients a day. We had hallways filled with COVID patients; there was nowhere to put them.” In the space of a few brutal days in late April, three of Gilman’s colleagues died, including one by suicide. “When it’s a colleague that you’re taking care of and you know them as a person you’ve been on a journey with…man, that’s hard.”

Though much of the media focus was on the risks faced by older patients, Gilman was struck by how many of the critically ill were in their 20s, 30s and 40s. In mid-April, his own 27-year-old cousin, a gym teacher at a New Jersey charter school, suddenly died; he went to the ER twice with chest pain but was diagnosed with anxiety and sent home, according to his relatives, only to collapse in his car on the side of the road.

As the crisis in New York City ebbed, Gilman could see trouble ahead in other parts of the country, including in Yuma, Arizona, where he was about to start a new job. It seemed vitally important to help younger people understand the risks they faced—and that they created for others—by not adhering to physical distancing or wearing masks, not to mention the dangers that health care workers faced from continuing shortages of PPE. So Gilman began gathering the memorials he saw on Twitter and Facebook, many of them found by Rezba or on @FacesOfCOVID, and organizing the dead on his website in the type of gallery that he knew would pack an emotional wallop. Then he went a step further, making the photos and obituaries—more than 1,000 people—sortable by age and profession.

“You begin to see a pattern here,” he said. “When someone says, ‘Oh people aren’t dying, they’re not that [young],’ you can come back with actual names, actual articles, quickly. It’s more powerful. You have your evidence there.”

One of the most overtly political projects is Marked by COVID, formed by Kristin Urquiza in honor of her father, Mark, after her “honest obituary” of him went viral in early July. To Urquiza, who earned her master’s in public affairs from the University of California, Berkeley, and works as an environmental advocate in the San Francisco area, “the parallels between the AIDS crisis and what is happening now with COVID are just mind-boggling [in terms of] the inaction by governments and the failure to prioritize public health.” She and her partner, Christine Keeves, a longtime LGBTQ activist, hope the project will be both “a platform for people to come forward and share their stories” and the COVID-19 version of the anti-AIDS group Act Up.

They’re also raising money on GoFundMe to help other families pay for obituaries; the second honest obit on their site was for a respiratory therapist in Texas named Isabelle Odette Hilton Papadimitriou: “Her undeserving death is due to the carelessness of politicians who undervalue healthcare workers through lack of leadership, refusal to acknowledge the severity of this crisis and unwillingness to give clear and decisive direction to minimize the risks of coronavirus. Isabelle’s death was preventable; her children are channeling their grief and anger into ensuring fewer families endure this nightmare.”

It’s a trend that Rezba supports wholeheartedly. By the end of July, she had posted almost 900 names and faces of U.S. health care workers who had perished from COVID-19. She fantasized about what it would be like to leave the counting behind her. “It would be great if I could stop. It would be great if there was nobody else to find.” But she had a backlog of dozens of stories to post, and the number of deaths kept climbing.

In late June, after three months of near silence on the topic, the Centers for Disease Control and Prevention finally weighed in on a question of critical importance to millions of American women and families: How dangerous is the coronavirus for pregnant women and new mothers?

The CDC had been asserting that pregnant women don’t seem to be at higher risk for severe complications from the virus. As recently as late May, a spokesperson told ProPublica, “Current evidence shows pregnant women have the same risk of severe illness from COVID-19 as adults who are not pregnant.”

Then, the agency abruptly changed its tone. In its first examination of U.S. data on COVID-19 in pregnancy, the CDC found that expectant mothers with the virus had a 50% higher chance of being admitted to intensive care and a 70% higher chance of being intubated than nonpregnant women in their childbearing years.

Pregnant Latina and Black women were infected at significantly higher rates than white women, researchers reported. As of July 2, at least 30 expectant and new mothers with the virus had died.

That news was sobering enough. But what many experts found really worrisome were the glaring gaps in data that the study exposed.

The CDC acknowledged that crucial health information was missing for about three-quarters of pregnant women with the virus, including whether they had preexisting conditions or required an ICU stay or mechanical ventilation. For the vast majority of U.S. women of reproductive age who tested positive—about 326,000 women through June 7—there was no information about pregnancy status at all.

Researchers couldn’t even say how many of the hospitalized mothers-to-be—31.5% of the pregnant women in the study—had been admitted because of COVID-19, versus how many were in the hospital for other reasons, such as giving birth.

The flawed CDC report highlights a problem that OB-GYN providers and researchers in the U.S. have been fretting about since the pandemic began. Because emerging diseases can have catastrophic consequences for pregnant women and their babies, close monitoring of new illnesses in this vulnerable population is important. So is rapid communication with providers trying to keep their patients safe.

But the U.S. public health system’s efforts to understand the impact of the coronavirus in mothers and babies have been flat-footed, scattershot and agonizingly slow.

The holes in the CDC’s data are “startling. I won’t lie,” said Cindy M. P. Duke, an OB-GYN who runs the Nevada Fertility Institute in Las Vegas. “It’s shocking to realize that we do not have a uniform system in place” for collecting and analyzing basic maternal and infant health information during times of crisis.

“By the time we get the best data available,” said Christina Han, a maternal-fetal specialist who is on the clinical faculty at the University of California, Los Angeles, medical school, “this pandemic will be over.”

To track the coronavirus in pregnant women and their babies, the CDC is instructing local health departments to check a box on the standard Case Report Form if a patient is currently pregnant. Jurisdictions can also complete an “optional, supplemental form” providing information about disease severity and outcomes in mothers and babies, a spokeswoman said.

It’s a system that guarantees there will be huge data inconsistencies, time lags and gaps. “We’re talking about millions of cases that are having to be reported back to the CDC right now,” Han said, “And the clinicians who are taking care of these patients don’t have the time to be filling out the full case report forms.”

The CDC has “initiated COVID-19 pregnancy surveillance,” according to its study, working with local health departments to improve data collection going forward. But researchers didn’t give any details.

“We need to be set up prior to an outbreak to capture information about how any new or emerging or reemerging pathogen affects pregnant women and their infants,” said Denise Jamieson, who spent 20 years at the CDC studying reproductive infectious disease and now heads the OB-GYN department at Emory University medical school in Atlanta. “And I think it’s clear … that [the CDC] are not well poised to do that.”

It Doesn’t Have to Be This Bad

When COVID-19 arrived in Europe this winter, researchers in the United Kingdom were ready.

Caught unprepared by the H1N1 outbreak of 2009, and determined not to let that happen again, the National Institute for Health Research issued a call for studies in 2011 that could be up and running as soon as the next pandemic hit. Nine proposals were chosen, all focusing on flu but adaptable to other types of outbreaks; then they were “hibernated”—put on hold, the protocols periodically reviewed and revised, pending government action.

When the sirens began blaring this February, eight of the studies launched, including one by the U.K. Obstetric Surveillance System, a research platform devoted to rare disorders of pregnancy. “I was told to activate [it] on a Friday,” said Marian Knight, a professor of maternal and child population health at the University of Oxford, “and by Monday, we were collecting the data.”

The UKOSS design was ambitious—a comprehensive, prospective study of COVID-19-infected pregnant women at the National Health Service’s 194 obstetric hospitals; it was also straightforward, based on a two-page electronic form, with all patient information kept anonymous. The careful planning allowed researchers to move quickly without being overly rushed, Knight wrote in a blog post for The BMJ journal, “minimizing the risks of publication of, at best, misleading, or, at worst, erroneous, information”—problems that have bedeviled other high-profile COVID-19 studies.

By mid-May, UKOSS released its first findings from an analysis of every pregnant woman hospitalized in Britain from March through mid-April who tested positive for the virus, 427 in total. Mothers-to-be did not seem to get as sick overall from COVID-19 as they had from H1N1 flu and SARS, but Black, Asian and Middle Eastern women were far likelier to be hospitalized with the virus than white women were. About 1 in 10 women became so ill they required respiratory support. Five mothers and five babies died.

The study provided the kind of high-quality data that doctors and policymakers value most: populationwide, scientifically rigorous, immediately actionable. British medical organizations quickly issued new guidance about the heightened risks for women of color.

Medical groups also reaffirmed earlier recommendations that women in their third trimester should avoid job settings, such as working as a doctor or nurse on the front lines, that could expose them to the virus. That’s a much more conservative position than American medical organizations and employers have taken, citing a lack of research that would suggest a different approach. Knight said the UKOSS findings support stringent social distancing in late pregnancy. “That’s where we see the majority of women with critical disease. The good news is that women now know when they should start to be particularly vigilant.”

Public health experts say UKOSS’ proactive, big-picture approach is exactly what was needed in the U.S., which has nearly 4 million births annually—about five times as many as Britain—and wide racial disparities in maternal and infant outcomes that COVID-19 has likely only widened. By one estimate, more than 16,000 American women could be infected with the coronavirus when they give birth this year.

But the U.K. has universal health care, which gives the government access to vast amounts of patient data, making large-scale research like the UKOSS study more feasible. The U.S. health care system is fragmented and inefficient, much of its data hidden in black boxes.

The two nations also have very different approaches to maternal health, exemplified by how they confront pregnancy-related complications and deaths. The U.K. treats every mother’s death like a public health disaster; the U.S. can barelykeep track of its maternal mortality problem.

Women’s health in general tends to be an afterthought for American researchers and policymakers, said Barbara Levy, former vice president for health policy at the American College of Obstetricians and Gynecologists, now a consultant in the Washington, D.C., area. In a public health system that’s been underfunded for decades, pregnancy-related issues get especially short shrift.

“If we’re not seeing a red-hot button to raise our concern, then we just aren’t particularly curious about what might be going on.” Yet the stakes of this kind of population-based research couldn’t be higher, Levy said. “This is the future of our world. This is the next generation.”

Patching Together a View

Starting with the first, very limited case reports from China, there’s been a deluge of studies seeking to fill the information void about COVID-19 and pregnancy. In the U.S., much of the research has come from hot spots like New York City, Seattle and Chicago, where physicians in the throes of the pandemic have reported on their own patients and pushed out their findings with breakneck speed.

The general trend has been somewhat reassuring: COVID-19 can make pregnant women very sick, but many seem to remain asymptomatic or become only mildly ill. There have only been a few cases of suspected “vertical transmission”—mothers passing the virus to their babies in the womb—but those remain under investigation, and most infants born to COVID-19-positive women have done fine. Some red flags have also emerged: A couple of cases of heart-related complications, indications of placental abnormalities and reports of asymptomatic women who spiraled after giving birth.

The underlying data in many of these case reports is overlapping and confusing, with little or no peer review to vet the findings. “In none of these series can we be certain of the underlying population denominators nor the degree to which they are affected by the biases” inherent in small-scale studies conducted in a single hospital or city, Knight wrote in her BMJ commentary. “The results are thus almost impossible to interpret.”

Meanwhile, numerous efforts are underway to do larger scale, longer-term, more scientifically meticulous studies that could give a fuller picture of how the virus affects pregnant women and babies in different parts of the U.S. (which is likely to be different from how it affects women in the U.K. or Sweden or Iran). In late May, the National Institute of Child Health and Human Development announced a sweeping initiative, a series of studies at the 12 academic institutions in its Maternal-Fetal Medicine Units Network, the preeminent obstetric research collaborative in the U.S. The network, which dates to the mid-1980s and stretches from the Rhode Island to Utah, is “a very well-oiled machine that can put protocols into place very quickly,” said Diana Bianchi, a prenatal geneticist who heads the NICHD, which is one of the National Institutes of Health.

One big study will compare women who delivered at the various sites between March and December of this year with women who delivered in the same hospitals in the same period in 2019, Bianchi said. “They’re asking, first of all, is there a difference in the number of deaths? Is there a difference in the number of cesarean sections that have been performed? Is there a difference in terms of the maternal near misses?… If we see any increased incidence of complications, death, whatever, then the presumption is the difference is due to COVID.” Another study will follow 1,500 COVID-19-positive pregnant women to understand the course of the disease and its treatment.

A different approach, the PRIORITY study, originates at the University of California, San Francisco, and UCLA. The idea is to build a large nationwide registry of women who contracted COVID-19 at any point in their pregnancy and to follow them for at least a year after they give birth, miscarry or have an abortion. A key goal is to make the registry more geographically, racially and economically diverse than is typical of many academic-based studies, “because we want the results to accurately reflect the true representation of pregnant people that are being impacted by COVID 19,” said Vanessa Jacoby, an associate professor at UCSF who is one of the lead investigators. To that end, the researchers are working with birth advocates in communities of color around the country to get the word out to potential participants directly; they don’t need a doctor or hospital to take part. In the first few weeks, many of the women enrolled were pregnant health care workers.

Another UCSF-based study, the ASPIRE registry, will focus on early pregnancy, when the risks are greatest for birth defects and miscarriages, and aims to eventually enroll 10,000 participants.

“This disease is so humbling because it’s new to humans, and we keep learning more and more about its manifestations in real time,” Bianchi said. “We have not gone through a nine-month cycle with pregnant women. And so I’m very concerned about the consequences of infection in the first trimester.” She points to Zika, a mosquito-borne virus that was once thought to be harmless because the symptoms in men and nonpregnant women were often quite mild. Only after newborns exhibited devastating neurological disabilities did researchers realize how dangerous the virus really was.

Recent reports of COVID-19’s unexpected effects—like a life-threatening inflammatory syndrome in children—have intensified providers’ unease. On a Facebook group for OB-GYNs with 4,400 members, doctors have recently been trading stories about an alarming, if highly anecdotal, increase in miscarriages and stillbirths in some of their practices. But the OB-GYNs didn’t know whether what they were seeing was a real spike caused by COVID-19, an increase caused by something else or a statistical fluke magnified by their own anxiety. And what, they worried, might the reports about clotting disorders in younger, nonpregnant adults mean for expectant and new mothers, who are already more susceptible to life-threatening blood clots?

“The gap in knowledge—it’s chilling,” said Jane van Dis, a Los Angeles-area OB-GYN who is the medical director at the Maven women’s health telemedicine platform and helps administer the Facebook group. “It’s very distraught-provoking to be expected to be an expert on a topic that we’ve spent our whole lives dedicated to, but for which we don’t have the answers right now, and they’re really important answers to be able to have.”

The truth is, answers may be elusive for a long time. “This virus keeps surprising us,” said Sonja Rasmussen, former director of the CDC’s Office of Infectious Diseases, now a professor of pediatrics and epidemiology at the University of Florida medical school. “That was true for Zika and Ebola, too.” One of the most important lessons of past outbreaks, she said, is that “you can’t be too confident early on. It just shows the importance of collecting data and not being too sure about what you think you’re going to see before you collect those data. You’ve got to keep an open mind.”

Preeclampsia, a dangerous form of hypertension that can develop during pregnancy or in the days and weeks after childbirth, is one of the most common causes of maternal death and severe complications in the United States. The large majority of deaths occur after delivery, often from strokes.

But you’d never know it from the incomplete, imprecise, outdated, and sometimes misleading information published by some of the most trusted consumer health sites in the country.

Instead, you might come away with the impression that, as Harvard Health Publishing says, preeclampsia “occurs only during pregnancy.”

From an article on the government-affiliated site MedlinePlus, you might conclude that the “cure” for preeclampsia is delivering the baby. Until this weekend, the Mayo Clinic’s site said the same thing. In reality, said Eleni Tsigas, executive director of the Preeclampsia Foundation, even after delivery, “it can still take a while for the mother to get better, and some mothers get worse before they get better.” If treatment is delayed because people believe the danger is in the past, mothers can die.

Preeclampsia has been back in the news, thanks to Beyoncé’s Vogue interview discussing her recent experience with the condition. That’s led to a spike in Google searches of symptoms, preventive measures, and treatments. Many of those readers are going to health websites that regularly make Top 10 lists for trustworthiness, and journalists are linking to the same highly regarded sites in their stories. Yet the information on some of those sites—especially about the risks of preeclampsia in the postpartum period—has been “bad or misleading,” Tsigas said, something she called “really disturbing.”

“It can mean the difference between life and death,” she added.

Preeclampsia affects 3 to 5 percent of expectant and new mothers in the United States, up to 200,000 women a year, and it is responsible for 15 percent of premature births. No one knows what causes it, although the placenta is believed to play a role. As in Beyoncé’s case, the risk factors include having twins, being black, and being over 35. But it can strike any woman, usually after the 20th week of pregnancy, and it can quickly become a crisis. Around the world, preeclampsia kills about five women every hour. At least 60 percent of preeclampsia deaths are preventable, and patient education is an important part of the solution, experts say.

In affluent countries, the condition is highly treatable. Yet in the United States, preeclampsia accounts for 7.4 percent of maternal deaths, according to the Centers for Disease Control and Prevention, killing more than 50 mothers a year—one reason the US has the highest maternal mortality rate in the industrialized world. One of those women was Lauren Bloomstein, a neonatal intensive care nurse in New Jersey, whose 2011 death some 20 hours after giving birth was chronicled by ProPublica and NPR as part of our Lost Mothers project.

The greatest risk is to black mothers, who are more likely to enter pregnancy with chronic high blood pressure and to develop preeclampsia. They are more than twice as likely to die from the condition than white women, the CDC Foundation reported this year. Preeclampsia-related complications are the third-leading cause of maternal deaths among African American women.

After reading reports about Beyoncé, ProPublica took a look at how top health sites discuss preeclampsia. We sent screenshots and links to Tsigas, one of the leading experts on the condition in the United States, for review last week.

Virtually every site we asked her to look at contained some problematic language, Tsigas noted in her written comments. Her biggest area of concern: A number of sites flubbed how they explained postpartum preeclampsia—sometimes mentioning it only in passing, or sometimes failing to mention it entirely. In the case of the Mayo Clinic, the main overview article that had long been on the site had “no mention of postpartum anywhere,” Tsigas wrote. The Mayo Clinic site did discuss post-birth preeclampsia in a separate article, but it didn’t link to that information in its main overview, so it was easy to overlook.

Postpartum preeclampsia can be especially dangerous because the symptoms, including swelling, gastric problems, and headaches, often mirror the discomforts of normal birth. Meanwhile, new moms are often too tired and overwhelmed to go to the doctor or the emergency room unless they are sure something is wrong. Accurate information about post-birth complications is essential, said Cynthia Gyamfi-Bannerman, a maternal-fetal medicine specialist and co-director of the Columbia University Preterm Birth Prevention Center in New York, “because in that period, women might not have access to a provider, and they will look up their symptoms online.”

Tsigas also took issue with sites, including MedlinePlus and (until this weekend) the Mayo Clinic, for using a variation of this language: “The only cure for preeclampsia is delivery of your baby.” This idea that the condition goes away after delivery is long-outdated, but—as ProPublica and NPR‘s reporting has shown—it continues to be all-too-prevalent among providers, including ER staff. The language may also reflect the concern among some medical professionals that if women don’t believe their condition is serious, they will resist delivering before their due date or by cesarean section—and put themselves and their babies at risk.

“There’s no question that delivery is often indicated, and sometimes quite urgently, to save the life of mother and/or baby,” Tsigas wrote. But, she added, “No provider should tell a patient that ‘the cure for preeclampsia is delivery.”’ Instead, she said, delivery should be seen as a “critical treatment” along with other measures, such as medication to reduce blood pressure and magnesium sulfate to prevent seizures and strokes. Describing delivery as a cure “lets everybody off the hook. Moms, their partners and even the providers all stop paying attention to mom’s health concerns after she delivers her baby…We need to continue to monitor mom until her blood pressure and other vital signs return to normal.”

The Mayo Clinic updated its language over the weekend, saying it had “self-identified the need to refine its preeclampsia content” before ProPublica reached out last Thursday. “All content is reviewed by Mayo Clinic’s subject matter experts for medical accuracy, relevance, and to ensure a Mayo Clinic-wide interpretation of the best-available evidence from sources such as US federal agencies and guidelines,” Dr. Sandhya Pruthi, the Mayo Clinic website’s chief medical editor, wrote to us on Friday. “All health information is reviewed on a scheduled, rolling basis, and any critical developments (e.g., FDA pulls drug from market) are processed swiftly to ensure that the content is accurate and relevant.”

Before and After: Old Mayo Clinic Language

Left untreated, preeclampsia can lead to serious — even fatal — complications for both you and your baby. If you have preeclampsia, the only cure is delivery of your baby.

Updated Mayo Clinic Language

If you have preeclampsia, the only cure is delivery of your baby. Even after delivering the baby, it can still take a while for you to get better…Rarely, preeclampsia develops after delivery of a baby, a condition known as postpartum preeclampsia.

The Mayo Clinic also updated its language to note that black women have a higher risk of developing the condition. Two other respected sites, of the Cleveland Clinic and MedlinePlus, continue to omit this important fact. That doesn’t surprise Monica McLemore, an assistant professor of nursing at the University of California-San Francisco who studies racial disparities in infant and maternal outcomes. “A lot of the sites are designed by people who don’t understand the importance of informing a variety of women about what their risks are,” she said.

Victoria Vinci, a Cleveland Clinic spokesperson, said its site would add the risk for black mothers in the next regular update. “Our standard for updating our page articles is every three to four years. This one is coming up on that mark.”

Incorrect information on MedlinePlus, which is published by the US National Library of Medicine, is especially problematic because it carries the government’s seal of approval. “Medline should be the gold standard,” McLemore said.

Yet the site’s main preeclampsia article “does not reflect the latest information,” Tsigas wrote. In addition to the already-noted problems, she cited the article’s suggestion that protein must be present in the urine for a preeclampsia diagnosis to be made. One of the mistakes providers often make is discounting spiking blood pressure and other symptoms because a protein test is inconclusive.

Nor, Tsigas said, is the information about treatment in line with current recommendations from the American College of Obstetricians and Gynecologists and other leading maternal health organizations. “The recommendations for bedrest and salt reduction aren’t really evidence-based,” Tsigas pointed out.

Medline Plus’ Language

Treatment

The only way to cure preeclampsia is to deliver the baby.

Most often, at 37 weeks, your baby is developed enough to be healthy outside the womb.

As a result your provider may want your baby to be delivered so the preeclampsia does not get worse. You may get medicines to help trigger labor, or you may need a C-section.

If your baby is not fully developed and you have mild preeclampsia, the disease can often be managed at home until your baby has matured. The provider will recommend:

• Bed rest, and lying on your left side most or all of the time
• Drinking plenty of water
• Eating less salt
• Frequent doctor visits to make sure you and your baby are doing well
• Medicines to lower your blood pressure (sometimes)

Medline’s article comes from a company called ADAM, part of the Georgia-based health care services conglomerate Ebix Inc., which also provides content to other health sites. “You raise some important points, in particular about postpartum preeclampsia,” ADAM’s editorial director, Brenda Conaway, wrote in an email on Monday. “As it happens, this article”—last reviewed in May 2016—”is currently in review as part of our editorial review process. I will be talking with the senior medical editor and our medical director about the article today, and we will update it to reflect any needed changes.”

When reached by ProPublica, Harvard Health Publishing also agreed to make revisions. The problems with its preeclampsia write-up extend beyond the initial assertion that preeclampsia only occurs in pregnancy, Tsigas said. By focusing on eclampsia—seizures—as the main danger to mothers, it ignores the immediate risk of strokes caused by high blood pressure. Women with preeclampsia also have a much higher risk of heart attacks and strokes later in life.

The site’s chief medical editor, Dr. Howard LeWine, said the current language that the condition “occurs only during pregnancy” would be quickly revised. He said the wording is “technically correct”—preeclampsia only occurs in women who’ve recently been pregnant, and even postpartum preeclampsia is believed to originate during pregnancy. But, he acknowledged, “it gives the wrong impression. It’s misguiding people and will get changed.”

Last week, researchers studying maternal mortality in the United States reported an ominous trend: The rate of pregnancy-related deaths in Texas seemed to have doubled since 2010, making the Lone Star State one of the most dangerous places in the developed world to have a baby. Reproductive health advocates were quick to blame the Legislature for slashing funding in 2011 and 2012 to family-planning clinics that serve low-income women, calling the numbers a “tragedy” and “a national embarrassment.”

Now a 15-member state task force has issued its own maternal mortality report, offering a new view of what might be going on. The bottom line: Maternal deaths have indeed been increasing in Texas, members said, and African American women are bearing the brunt of the crisis. For 2011 and 2012, black mothers accounted for 11.4 percent of Texas births but 28.8 percent of pregnancy-related deaths.

“The disparity in the rates for African American women is incredibly important and not widely recognized,” said Lisa Hollier, a professor of obstetrics and gynecology at Baylor College of Medicine in Houston who heads the Maternal Mortality and Morbidity Task Force.

But the overall maternal mortality rate and the actual number of maternal deaths remain uncertain, as does the underlying reason for the sudden jump in 2011 and 2012. Among the challenges encountered by task force members as they try to find answers: Recent changes aimed at keeping better track of maternal deaths—such as check boxes on death certificates noting that a woman was recently pregnant—have led to confusion and more inaccuracies.

“The short answer is, I don’t know” what caused pregnancy-related deaths to rise sharply in that period, Hollier said. “The longer answer is I think it’s unlikely that there is a single explanation. The problem is complex and the increase is likely due to a multitude of factors.”

The task force’s most eye-opening findings weren’t about deaths but severe maternity morbidity—complications so serious that mothers might have died without major medical and technological intervention or sheer luck. Such cases were far more common than deaths, the report said, and far more common among African American women.

At the same time, Latina women, who now account for nearly half of births in Texas, made up just 30.8 percent of maternal deaths. They also had a much lower rate of severe complications than African Americans.

The report contains other surprises that will give medical experts and policymakers plenty to think about in Texas and beyond. The leading cause of maternal deaths wasn’t one of the traditional culprits (hemorrhage, infection, pregnancy-induced hypertension), but rather cardiac problems. The second leading cause: drug overdoses. Hemorrhages and blood transfusions were the biggest factors associated with severe complications.

And women aren’t just dying in the hospital during or immediately after childbirth. According to the new report, about 60 percent of maternal deaths occurred six weeks or more after delivery. That figure is particularly important because more than half of the nearly 400,000 births in Texas every year are covered by Medicaid, but benefits for many mothers expire 60 days after they give birth.

The lack of health insurance—Texas has the largest number of uninsured people in the country and has rejected Medicaid expansion under the Affordable Care Act—could be contributing to maternal deaths and near-deaths, task force members said. “If a person had been in regular care, maybe those cardiovascular [problems] would have been identified” before the mother died, said June Hanke, a strategic analyst and planner at the Harris Health system in Houston who advocated the creation of the task force and is now a member. Without insurance, “if you need medication, can you really afford it? Do you even know your blood pressure is high?”

Mental health issues were another overlooked yet critical factor in maternal deaths and severe morbidity, including drug-related fatalities, the task force said.

For many Texas women, “there are no mental health services and even less addiction drug and alcohol services,” said Nancy Sheppard, a task force member and licensed social worker with the Seton Healthcare network in Austin. “A lot of time the drugs are being used to self-medicate because [mothers] cannot get mental health treatment.”

Mothers who receive antidepressants may not be able to afford them when they lose their Medicaid coverage. “To quit antidepressants cold turkey is very bad. You have to be weaned off that,” Sheppard said. “Postpartum, your hormones are raging, you’re operating on two hours of sleep, you’re not a normal person to begin with. It is a perfect storm, it really is.”

Maternal mortality has become a growing public health concern in the United States in recent years, as rates have risen nationally at the same time they have fallen in virtually every other affluent country. The first step to bringing the numbers down is to figure out how many women are dying and why, a process that has proven to be surprisingly difficult.

The Texas task force was established by the state Legislature in 2013 with a mandate to identify and review all maternal mortality cases in the state as well as trends in major pregnancy complications. About two-thirds of US states conduct maternal mortality reviews. The Texas committee uses the Centers for Disease Control and Prevention’s definition of pregnancy-related deaths: any maternal fatality within one year of pregnancy, “from any cause related to or aggravated by…pregnancy,” including chronic health conditions or “a chain of events initiated by pregnancy.” The final count includes homicides and suicides but not motor vehicle deaths and deaths from non-pregnancy-related cancers.

By matching death and birth certificates and other data, the task force identified 100 maternal deaths in 2011 and 89 in 2012. Next, members began to conduct reviews of the 2012 cases. The process was greatly complicated by the complexity of medical records, the lack of consistency among medical examiners and health care providers in how they report data, and the requirement to redact all identifying information—patient names, provider names, and so forth—before the task force could begin its review. By the time its initial report was completed this summer, the task force had finished reviewing just 11 deaths.

To come up with the rate for severe morbidity, the task force analyzed discharge data for every obstetric hospitalization in 2012, noting those that had at least one major indicator of major complications—everything from stroke and sepsis to blood transfusions.

One thing the task force report did not do was calculate a maternal death rate for 2011-12. By contrast, the study published last week in the journal Obstetrics and Gynecology found that the mortality rate in Texas had jumped from about 18.6 deaths per 100,000 births in 2010 to about 33 deaths per 100,000 births in 2012—an increase that researchers said was difficult to explain “in the absence of war, natural disaster, or severe economic upheaval.” The overall US maternal mortality rate was 23.8 deaths per 100,000 births in 2014, the study said.

That article, by researchers at the University of Maryland, Boston University, and Stanford University, employed a different methodology from what the Texas group used, and its mortality-rate calculations would suggest significantly more maternal deaths than what the task force found—closer to 125 deaths in 2012. Hollier said the actual number of deaths is less important than the upward trend. “To say, is that 89 or 86 or 93 is almost a distraction from the real issue, which is that the rate is rising,” Hollier said.

The task force did not study whether the family planning cuts in the 2011-12 legislative session—largely aimed at Planned Parenthood but affecting other providers as well—might have triggered the spike in mortality. But other analysts doubted the cuts were to blame, noting that they took effect in late 2011 and 2012, after maternal deaths had already started to rise.

But task force members said the cuts certainly didn’t help low-income women who depended on clinics like Planned Parenthood for basic health care and preventing pregnancies that might prove dangerous. The Texas record is “horrific…relative to the rest of the nation, and there’s absolutely no excuse for it,” Sheppard said.