Chapter Eight

Sick and Dying

How Discrimination Creates Circumstances for Pregnancy Loss

The nationwide rate of infant mortality—when a baby born alive dies—is on the decline (though embarrassingly high compared with other wealthy nations).1 But maternal mortality rates are alarmingly high, and they’re expected to rise even more in the aftermath of the Supreme Court decision to reverse abortion protections. These are deaths tied directly to childbirth and often coincide with pregnancy complications and can be related to miscarriage and fetal death too. The United States has 32.9 maternal deaths per 100,000 live births. (The next closest, by comparison, is the United Kingdom with 10.9 per 100,000 births.)2 The data for Black women is 69.9 deaths per 100,000 live births, making them nearly three times more likely to die than white women during pregnancy or within a year of the end of the pregnancy.3 Black women are also far more likely to suffer miscarriage, stillbirth, and other complications.

Anushay Hossain, in her book The Pain Gap about how the medical world treats female pain, particularly that of women of color, puts it this way: “Maternal mortality ratios tell us how well a country’s healthcare system in general is functioning. In America, our maternal mortality rates are a stark reminder of how little we actually value women’s health.”4

For all birthing people over the past fifty years, we’ve medicalized pregnancy to the max, where most are giving birth in hospitals (unless you deliver in a birthing center or in a bathtub at home, but those are mostly available to women of privilege). We’re scheduling inductions and C-sections and getting epidurals. Not all bad, but it’s possible the illusion of control is making some of us forget how deadly childbirth can be.

“It’s really underappreciated that pregnancy is dangerous,” said Dr. Sarah Prager, the ob- gyn and professor at the University of Washington. That danger is present for all women, but especially for women of color.

A recent study on racism’s effects on Black women in the United States found, very plainly, that the impact “on obstetric health inequities is notable, with Black communities experiencing higher rates of preterm birth, low birth weight, infant mortality, and maternal mortality.”5

The disparities for Black and Native American women are the most stark and baked into the very history of the nation, but healthcare inequity is demonstrable across all people of color.

“Dealing with racism in our daily lives is a major factor in our health and well-being. The experience of racism makes Black people sick, whether it’s mental and emotional health or even physical health,” Jamila Taylor, a reproductive rights advocate, told us.6 She’s had many women approach her to say they’re afraid to get pregnant because they are worried they won’t survive it.

Mistrust of the medical world runs deep with good reason. There are many cases throughout our history where Black people were abused by the medical community. The Tuskegee experiment, forced sterilizations, and the story of Henrietta Lacks are among the most well-known examples, but that’s just a small sample.7 There is also some proof that Black doctors take better care of Black patients than white doctors do; infant mortality for Black newborns was halved when they were cared for by Black rather than white physicians, one study found.8

Black, Indigenous, and Hispanic women are far more likely to experience preterm birth and complications in childbirth such as preeclampsia, gestational diabetes, and preterm labor. But their pain is also more prone to be minimized and their concerns less likely to be believed. Scientific data suggests a significant amount of these issues may be preventable, if only everyone was getting proper health care. Serena Williams, one of the most recognizable women on earth, nearly died in childbirth because no one was listening to her complaints about her declining health.10 After her first baby was born in 2017, doctors and nurses dismissed what she was trying to tell them about her pain and previous experience with blood clots, she wrote in a harrowing first-person account. Finally, a scan that she insisted on showed blood clots in her lungs, and further surgery revealed more clots in her abdomen. (She had a healthy delivery with her second child in 2023.)

Tori Bowie, an Olympic gold medal–winning sprinter, was found dead in her Florida home in 2023. She’d been eight months pregnant. No one had heard from her in a few days, so police did a welfare check and discovered her in bed. An autopsy showed that she had gone into preterm labor and died from complications of childbirth because of respiratory distress and eclampsia, which usually has lots of signs and symptoms as long as medical professionals are looking for them, like elevated blood pressure, protein in the urine, headaches, and shortness of breath. The baby was stillborn. This woman was an elite athlete in peak health. She won three medals for Team USA at the 2016 Olympics.11 Yet, she died alone in her house.

After Bowie’s death, one of her teammates, Tianna Madison, shared on Instagram that she also nearly died while giving birth to her son in 2021. What’s perhaps even more disturbing is what else she divulged: “THREE (3) of the FOUR (4) of us who ran on the SECOND fastest 4x100m relay of all time, the 2016 Olympic Champions have nearly died or died in childbirth,” she wrote, referring to herself, Bowie, and Allyson Felix, who had a baby in 2018.12

If doctors won’t listen to one of the most famous and wealthiest living athletes or watch out for Olympic gold medalists, how can the everyday Black woman stand a chance?

Tomeka I. from the greater Charlotte area told us that looking back, she wonders how her story was even possible from a risk management standpoint—her career field. She was pregnant in 2017 and was forty-one when she delivered, which put her at a higher risk of preeclampsia. They gave her a baby aspirin regimen and, when a blood test revealed anemia, iron pills.13

Her pregnancy had been pretty easy, no morning sickness, and she walked for thirty minutes every day on her lunch break. That May, she started with weekly appointments, and they thought her son was measuring small. They sent her up to maternal-fetal medicine to get a same-day ultrasound, which was inconclusive because the umbilical cord was blocking their view. The following week, he failed a nonstress test, but after another ultrasound, they said he was fine. She was thirty-five weeks pregnant and thought she had cleared all the hurdles.

She went to a Mother’s Day dinner with family and awoke the next morning with a bad stomachache. She vomited and then was able to go back to sleep—she assumed she had food poisoning. The next day when she stood up, she passed out, and an ambulance took her to the hospital. They gave her a fetal doppler and an ultrasound in the ER, which revealed her baby had died, and the doctors told her she had HELLP syndrome, a pregnancy complication associated with preeclampsia. It’s an acronym that stands for hemolysis, elevated liver enzymes, and low platelet count. The cause is unknown. (It hasn’t been studied.)

“I had no idea what it was. We were so confused,” she told us. “They didn’t explain it. I think we ended up googling it. They said they needed to induce me. I immediately asked for a C-section. I said, ‘I don’t think I can deliver him. My son just died. Please let me have surgery,’ and they said no but didn’t explain why. There was no explanation for what was happening to my body.”

Her heart rate was shifting wildly, so they transferred her to another hospital, and a resident picked up her CT scan and realized Tomeka was bleeding internally. They rushed her for the C-section she had asked for earlier without explaining the sudden change of heart.

“I had a liter of blood in my stomach, a softball-size clot on my liver, which ruptured that night,” she told us.

Her baby boy, Jace, was born just after midnight. The rest of her family got to hold him while she was unconscious, but she only got five minutes before the nurses took him away. There was no cooling device in her room that allows some parents to spend more time with their babies. Why are there such uneven standards of care for people who suffer loss? Why do some people get the whole suite of care and others nothing at all?

“And because I was intubated, I couldn’t talk to him. I couldn’t say ‘I love you,’ or ‘I’m sorry,’” she told us. “I was never able to use my voice to talk to him. That was stolen from me, and I can never get that moment back. That’s what still chokes me up now.”

Tomeka was initially released after a week and then was readmitted the day of Jace’s services because she had an infection from the liver embolization. She spent forty-five days in the hospital total, including treatment with aggressive antibiotics and having part of her liver removed. She missed her son’s funeral.

Afterward, her friends asked whether doctors had taken urine samples. She had one to verify her pregnancy, then never again. Urine samples are routine in pregnancy checkups—we had to give a urine sample every time we saw our doctors throughout our pregnancies. Protein in the urine is a sign of preeclampsia. The abdominal pain Tomeka had? Also a sign. So is vomiting. They also weren’t checking her blood, which would have likely found something too. She had a handful of blood draws, the last being the first day of her third trimester. As it turns out, none of this is required. Blood and urine samples are just recommendations.

“I was like, what in the hell? I didn’t know that should have happened. This was my first pregnancy,” she said. “The first thing you think when you lose a pregnancy is ‘what did I do?’ I have two master’s degrees. I went to every appointment. I went to that OB for years. For them not to check my blood and urine, especially after identifying me as high risk, how could that be? This could have been prevented or caught earlier if they had done their job.”

She is now the executive director of Jace’s Journey, which was founded in 2019 to address racial disparities in maternal health outcomes and advocates for a risk management checklist for providers to reference during every appointment.

Health Problems and Pregnancy Loss

Maternal morbidity—the short- or long-term health problems that result from being pregnant or giving birth—is also pervasive in the United States. More than sixty thousand women nationwide per year suffer from severe maternal morbidity with problems like sepsis, eclampsia, renal failure, stroke, or pulmonary embolism.14 Hundreds of thousands more have diseases that make their pregnancies more difficult and more dangerous and can lead to the unwanted end of their pregnancies and permanent issues after the baby is born. This too is a far more pronounced problem for people of color in the United States.

A 2016 analysis of five years of data found that Black college-educated mothers who gave birth in local hospitals were more likely to suffer severe complications of pregnancy and childbirth than white women who did not graduate from high school.15 And then in 2020, researchers examined data on 591,455 deliveries at forty hospitals in New York City from 2010 to 2014. They calculated risks of serious complications, like heart failure, respiratory distress, blood transfusions, or hysterectomy. They found that Black and Latina mothers were more likely to experience delivery complications even when they had the same kind of health insurance and gave birth at the same hospital.16

Michelle Drew, a midwife in Delaware, runs the Ubuntu Black Family Wellness Collective, which is aimed at providing holistic reproductive care to Black people. She said many of her clients come to her because they distrust hospitals and doctors, and they are hoping to be believed and just, you know, cared for medically and emotionally. As part of her work, she curated a list of therapists to help women through pregnancy. “It’s really important for us that they be able to talk to someone who understands what it means to be a Black woman every day,” she told us.17

In order to help this crisis of maternal mortality and morbidity, a World Health Organization study in 2021 recommended—get this—more midwives!18 Turns out the presence of a midwife is associated with fewer cesarean sections, lower preterm birth rates, and lower episiotomy rates, in part because they adopt a more holistic approach to childbirth, treating it more like a life event and less like a medical disability.

“Research consistently demonstrates that when midwives play a central role in the provision of maternal care, patients are more satisfied, clinical outcomes for parents and infants improve, and costs decrease,” according to an issue brief by P. Mimi Niles and Laurie Zephyrin for the Commonwealth Fund19, a foundation with the mission to promote a high-performing, equitable healthcare system.

That’s right, folks. The same midwives run out of town by the ob-gyns at the turn of the last century are now the ones recommended for better childbirth outcomes. (Cue screaming into pillow.)

The Dobbs Effect

When the Supreme Court moved to overturn abortion protections in 2022 in the case Dobbs v. Jackson Women’s Health Organization, there wasn’t much thought given to pregnancy loss at all. (You’ve probably picked up on that theme by now.) The assumption was very much that these were separate things. In some ways, this argument also plays right into what we’ve been saying: pregnancy is increasingly a choice for many people, and therefore if your pregnancy has ended, that’s also your choice. Except, of course, the 20 percent of pregnancies that end in miscarriage. Except, of course, when your baby has a fatal anomaly and you don’t know how to proceed.

As it turns out, it’s sometimes difficult to know whether the end of a pregnancy was a miscarriage or a medication abortion, because the body does similar things. “Heartbeat laws,” which have been enacted, as of this writing, in Alabama, Georgia, Kentucky, Louisiana, Missouri, North Dakota, South Dakota, and Texas, ban abortion after the point when a so-called fetal heartbeat can be detected. This occurs as early as six weeks into pregnancy when an ultrasound picks up the grainy pulsing of what will eventually become a heart. These laws assume that if there’s still this pulsing, this “heartbeat” as we colloquially call it, the pregnancy is still viable. But doctors told us there can still be activity detected even as the miscarriage is happening. There are no separate miscarriage bells that go off inside the body when the pregnancy ends for unintended reasons. And most ob-gyns do not want to see you until you’re at least eight weeks pregnant—two weeks past the limit on abortion in at least one state.

“Even some ob-gyns will repeat misinformation,” Dr. Sarah Osmundson, an ob-gyn in Tennessee, told us. “There’s no difference between an abortion and a miscarriage medically. Your body doesn’t know if there is a heartbeat or no heartbeat.”20

Given how our culture pushes us to think about pregnancy, it makes sense that many of us are attached almost immediately. Fighting for a medical procedure for your miscarriage seems unnecessarily cruel then, doesn’t it? These laws—which we’ll discuss in the next section—now vary so widely from state to state that it’s difficult to understand how or when you can get medical care. Even medical professionals are confused.

It’s only been a short time since the protections fell, and already the effects are serious. NPR journalists spoke to a thirty-three-year-old woman named Christina who lives in the Washington, DC, area. She and her husband were thrilled when they found out she was pregnant. But at her first prenatal appointment, there was no heartbeat, and her hormone levels were low, so her doctor said she was having a miscarriage. They laid her options out: have a D&C, take medicine to make the pregnancy tissue come out faster, or wait it out. She waited, leaving for Ohio for a family wedding. She started bleeding. At her dad and stepmom’s house, she crawled into a bathtub so she wouldn’t make a mess.

“I was passing blood clots the size of golf balls,” she told NPR.21 She woke her husband, and they went to a nearby emergency room.

At the time, Ohio banned abortion after six weeks. (As of this writing, it’s twenty-two weeks, following a lawsuit, and Ohio voters in November 2023 passed a constitutional amendment ensuring abortion access.) The restriction, like many in other states, did not explicitly restrict miscarriage care, but it can have that effect anyway.

Christina went to the ER soaking menstrual pads with blood and was turned away. She went home and eventually lost so much blood that her husband called 911, and she was returned to the same ER, this time in an ambulance. She then finally got medical treatment and had the D&C procedure. She didn’t know for sure why she was sent home, but the requirement to prove she was miscarrying rather than aborting “could have cost me my life that day,” she told NPR.

It’s basic math, doctors told us. “Just practically, fewer abortions is going to mean more pregnancies, and more pregnancies will mean even more miscarriages,” Dr. Prager told us.22

Miscarriages account for roughly nine hundred thousand emergency department visits in the United States each year.23 But in some hospitals, doctors aren’t trained in procedures to manage the care. Dr. Prager cofounded the Training, Education & Advocacy in Miscarriage Management (TEAMM) project, which trains healthcare teams to perform pregnancy loss care in emergency and clinical settings, because some women haven’t established a relationship with an ob-gyn by the time they miscarry. The group has conducted workshops in more than one hundred sites in nineteen states. But as abortion restrictions continue in states nationwide, the number of medical providers taught the procedures is diminishing.

The “gold standard” in medical miscarriage management is the abortion regimen—mifepristone combined with misoprostol. But due to the FDA’s extra regulation of mifepristone—and numerous lawsuits—many patients are only offered misoprostol.24 The FDA currently allows for medication abortion up to nine weeks, while the World Health Organization says it’s safe for up to twelve weeks.25 Inevitably, more pregnant people will rely on the medication later in pregnancy in states where a procedure is not available. This is done in other countries somewhat successfully, but the risk is that all the tissue won’t be passed (a bigger risk in later pregnancies), and women will not seek medical attention because they’re afraid of being prosecuted.26 The side effects of these restrictions mean fewer people are able to be treated for miscarriage, and for those who are further along, D&E procedures will become less available as new laws are passed.

Morgan Nuzzo, one of only a few nurse-midwives trained in all-trimester abortions, cofounded a Maryland clinic that opened in October 2022, after Roe fell, and is currently the southeasternmost facility in the United States that offers abortions in late pregnancy.27 Ninety percent of her clients come from out of state. One heartbreaking reality: She sees children every week, some as young as nine, and her clinic also takes care of people who have developmental disabilities and/or are nonverbal. The clinic keeps tissue samples for pathology so detectives can try to locate rapists.

Nuzzo has noticed one outcome of the Supreme Court’s decision has been that the restrictions are pushing some people into later abortions, because they have to come up with money, transportation costs, and sometimes childcare. Care is priced at five figures over the twenty-six-week mark because it requires three days of a provider and staff on call twenty-four hours a day. It’s already limiting; many people cannot afford it.

She told us that a young couple came to end their wanted pregnancy because of a fetal anomaly and brought a blanket that their midwifery practice had knitted. Nuzzo called their home practice to give them an update. “The whole practice was there, saying, ‘How is she? Is she OK?’ They were so glad she was with me. This is community care. This is family care. It’s really important to offer that care and not operate in silos.”

Proponents of abortion restrictions say that miscarriage or stillbirth aren’t what they are after and that doctors and nurses should feel OK treating these conditions with whatever medical means they have at their disposal. But it isn’t working out that way. It’s hard to know exact numbers, but there have been more than one hundred cases in at least a dozen states where people suffering pregnancy complications had delayed care, according to news reports, lawsuits, and scholarly journals.28 Doctors say that number is much, much higher. And when we say delayed, we mean nearly died from blood loss, or they were told to wait outside a hospital until they got sicker, or they were turned away because the doctors couldn’t be sure if they were miscarrying or whether it was a complication from a medical abortion. Some were forced to carry their terminal babies only to deliver and watch them die. Others would have had to travel to receive care and could not afford the costs. Some who live in areas with less restrictive laws also have to wait because of the backlog of appointments from out-of-state residents. These delays will add up to more maternal deaths, not fewer, doctors tell us. But because of the difficulty in collecting proper maternal mortality and morbidity data, we might not know for years just how bad it gets on the ground.

Above all, though, doctors and academics say the people who suffer the worst in this landscape are low income and people of color, especially Black women, because of racism, socioeconomic status, and complicating health factors.

“Post-Dobbs, existing mistrust is likely to increase as clinicians become hesitant to provide evidence-based patient care for conditions such as pregnancy loss and ectopic pregnancy due to fear of legal repercussions,” according to a column in the medical journal Lancet in 2023.29

Looks like that’s exactly what is happening.