Sickle cell patients pressured to undergo unwanted sterilizations

BATON ROUGE, La. — The surgery was supposed to alleviate worry, but now, years later, Whitney Carter’s mind kept flicking back to it, wondering if it could be undone. She sometimes descended into these moods, taciturn, withdrawn, as if all hope had gone extinct. She sat on the couch in the half-light, blinds shut against the heat. The whole thing made her feel less than, like some essential part of her had been removed.

She was seven months pregnant when the doctor brought it up in April 2017. She could feel the baby’s weight on her bladder as the obstetrician went over the plan for her C-section, a month away. She shouldn’t eat before the operation. Once she arrived, her belly would be washed and shaved, her body draped. She’d get an epidural, numbing her from navel to thigh. Then the doctors would open her up. While they were in there, she remembers him saying, it would be best to tie her tubes, so she wouldn’t get pregnant again. Here was a consent form for her to sign.

It made her husband, Claude, think about eugenics. Would they be pushing sterilization this way if he and Whitney were white? Then again, what the obstetrician was saying made sense. Whitney has sickle cell disease. She’d inherited a mutation that made her hemoglobin sticky, prone to clumping, distorting the shape of her red blood cells, obstructing her circulation. It could cause unbearable pain, like a hammer and chisel to the bone. It could damage organs. It could exacerbate all the risks of pregnancy — and already, for a Black woman in the United States, the risks were unnerving.

With Christian, her oldest, she’d ruptured her sac, given birth early, and had a pulmonary embolism. With Raelyn, her second, she’d had a pain crisis in her hips, and the baby’s heart had slowed, requiring an emergency C-section. She’d been scared throughout this pregnancy, even as Claude nuzzled her, helped her inject blood thinner into her belly.

She could tell the doctor didn’t want her trying again. Carrying another child could end badly. She’d heard similar things from previous obstetricians, almost like a refrain.

Sitting there with the consent form in front of her, she started to cry. She could feel the baby squirming, kicking. She and Claude had only met a few years earlier; they’d only moved in together during the flood of 2016. She wanted to give him another child. If she didn’t sign the form today, she wondered, could she come back and make the decision later?

But the doctor said it was best done while she was already open, she recalled, rather than risking another surgery.

Her memory of that day is fuzzy. But there’s one thing she’s adamant about: She didn’t want to sign the form. Nor did she want to die in childbirth, leaving her kids without a mom. Her obstetrician was older, had delivered countless babies. He was Black, like her. She trusted him. Maybe he knew best.

“So I’m sterile,” she said, “if that’s what they call it.”

She let out a low, uncomfortable laugh. At first it was indistinguishable from a sob, then rose up into a rueful, hair-raising chuckle.

According to the document she signed, her consent could’ve been withdrawn at any time. That was why the federal government required a 30-day waiting period between consent and tubal ligation. But that wasn’t what she took away from the appointment.

“Once I sign, it’s like, OK, now I’m going to go give birth, and I’m going to be open. I mean, I can speak and say, ‘No, I don’t want this done,’ but they have my signature on a piece of paper,” she said. “I don’t know how that works. I just felt like, I guess this is for the best. But it wasn’t the best for me. I guess it was the best for them, because they didn’t have to deal with another sickle cell patient coming into their office saying they’re pregnant.”

Coercive sterilization is often talked about as an ugly part of America’s past, firmly in the realm of history. We slip it into the same file as the Tuskegee syphilis study, a horror that came to scandalous light in the 1970s and ended then. There have been more recent examples: Nearly 150 tubal ligations performed on California inmates without proper approval between 2006 and 2010. A Tennessee judge offering reduced sentences if prisoners got vasectomies in 2017. But those can seem like exceptions, carceral deviations from the uncoercive norm.

People with sickle cell disease tell a different story. Some describe OB-GYNs pushing them to get sterilized when they aren’t sure that’s what they want, and are still considering having more kids. Some say they would not have agreed to tubal ligations or other procedures if they’d received more accurate information. Others felt their doctors steered them toward these surgeries without offering or explaining less invasive alternatives.

It’s hard to know how often this happens, but of the 50 women with sickle cell interviewed for this series, seven reported being sterilized with questionable consent — and physicians say they’ve directly heard about dozens of other instances. The pattern extends across at least seven states, surgeries taking place at the hands of different OB-GYNs, who often frame it as a way of keeping mothers safe. Some occurred decades ago. Others were as recent as 2017 and 2022.

Teonna Woolford, CEO of the Sickle Cell Reproductive Health Education Directive, has heard about it from around 15 women. “They felt pressured into getting their tubes tied, because their doctors just felt they should never get pregnant,” she said.

Hematologist Payal Desai first heard about it when she moved from Ohio to North Carolina a few years ago. “I had a lady probably the first week I started here, she was from rural South Carolina, and they’d essentially told her — mandated her — to have a hysterectomy when she was in her late teens, early 20s. Like: ‘You have sickle cell disease, you can’t have a child,’” said Desai, director of Atrium Health’s sickle cell program in Charlotte. “It. Blew. My. Mind.” But since then, 10 or 15 of her patients have told her about similar experiences.

Some stories carry echoes of “Mississippi appendectomies” of the mid-20th century, in which Black women would go in for a different procedure and wake up to learn that their uterus had been removed. It was a sickle cell crisis that brought Shirley Miller into a hospital in West Palm Beach, Fla., around 1984. She was 26 or so, newly married, and a few months pregnant, in so much pain and on so much medication that her consciousness was flickering in and out. She remembers being informed that the doctors were going to give her an abortion. When she came to, she learned that they’d tied her tubes as well. Her then-husband had given consent.

“They didn’t believe that I was ever able to carry a child. But whose decision is that to make?” Miller said. She doesn’t tell this story when she gives talks as a sickle cell patient educator; she worries the audience wouldn’t remember anything else.

It happened to Tonya Mitchell twice. “You can always go back and get your tubes untied when you are ready to have more children,” she remembers her doctor in Little Rock, Ark., saying around the time her younger daughter was born, in 2004. But that wasn’t right. The procedure is considered “permanent contraception,” and involves severing, crushing, blocking, or removing the fallopian tube, disconnecting ovary from uterus, preventing eggs from slipping toward fertilization. Reattachment is possible in some cases, but by no means certain.

For Mitchell, that was a moot point: A few years later, around 2008, she felt a pain in her abdomen, and a different doctor said her left ovary was dying and needed to come out. Then, at the last appointment before her scheduled surgery, he told her that within a year, many patients like her ended up having the same issue on the other side, and suggested removing both ovaries at once.

“Definitely not standard practice,” said Cara Heuser, an OB-GYN in Utah who specializes in complex pregnancies and is a spokesperson for the Society of Maternal-Fetal Medicine, when asked about that recommendation. There are some tumors and cancer-associated genetic mutations that might have warranted discussing such an extreme procedure, but Mitchell didn’t have a family history of the cancers in question, and at her age, the benefits of keeping one healthy ovary outweighed the risks.

Nobody told Mitchell she was about to go through menopause at 30. She remembers burning up at night, having to step outside into the snow in a tank top, shorts, and bare feet, though the cold could trigger a pain crisis. She didn’t register what was going on until she called the doctor and was told, yes, hot flashes are normal when you no longer have ovaries. She’d understood beforehand that the double surgery would mean the end of her childbearing, but there hadn’t been much discussion.

For weeks, she grieved. She’d always wanted more than two kids. But it was deeper than that: She’d emerged from the anesthetic haze to learn that they’d taken out her uterus, too. She wondered if a man would ever want to be with her again. “I just felt like I wasn’t a woman anymore,” she said.

Only after she started working at the adult sickle cell program at the University of Texas Southwestern Medical Center, in Dallas, did she realize that something unethical might’ve occurred. “I can’t really say I consciously, 100% knew what I was giving consent to,” Mitchell said.

Some patient advocates find these stories disturbing but unsurprising. Approximately 100,000 Americans have the disease, and some 90% of them are Black. Again and again, when they arrive at the emergency room in agony, many are treated as if their pain isn’t real and are dismissed as “drug-seeking.” It can be hard to untangle the racism at play from the stigma that trails the illness itself — the stigma of being mislabeled as lazy or unreliable, of carrying “bad blood” or “defective genes,” of having a disability in a world where productivity is mistaken for worth.

In a way, the pattern of tubal ligations and hysterectomies with questionable consent is just an extreme version of something much more common: a kind of verbal sterilization, when doctors express the pernicious belief that people with sickle cell disease cannot or should not have kids.

There are good reasons for people with the disease to be cautious about pregnancy. One 2023 study found that their maternal mortality rate was 10 times higher than for Black people without the illness, and 26 times higher than for those of other races. Those are staggering disparities. But to doctors researching the risks, the answer is not to discourage people with sickle cell from becoming parents. The answer is to provide better care. There are hospitals that have teamed up sickle cell specialists with high-risk pregnancy experts, dramatically reducing complications and, in some cases, doing away with these deaths entirely. There are long-term contraception methods, less drastic than tubal ligation but just as effective.

“Not all advice is good advice,” said Alecia Nero, the director of the adult sickle cell program at UT Southwestern, during a recent conference. “I’ve had patients come back to me basically sterilized, and I don’t know why.” These weren’t clear-cut instances of “forced sterilization.” Many were murky, located somewhere in the ethical gray zone between coercion and autonomy, pressure and advice. There was consent, of some sort — but what officially counted as consent might not have been enough.

As Whitney Carter put it, “It’s kind of like I’m giving you a choice but I’m not giving you a choice.” It was confusing. She thought the doctor was a good guy, overall. She thought he did the right thing in bringing up tubal ligation. “Ultimately, I think it was my choice,” she said. “And I think he actually did say, ‘You have a choice.’ But the room — I read the room and it was like, ‘If you want to sign this paper, you can. But if you don’t, just know there are risks that come with you not signing the paper.’”

To her, it felt as if the doctor had set scales before her but his hand was pressing down on one side. As if his medical reasoning outweighed her personal reasoning, her desire to give Claude another kid, her faith that God had carried her through three pregnancies and could carry her through a fourth.

She’d grown up Baptist. She knew she was a child of God, and God had made her a woman, able to conceive. Sometimes, on breaks from her job answering calls for an insurance company, she sat quietly, trying to speak His Word into her life. She couldn’t help but wonder what this story said about her. “If I have so much faith in God, why am I having people force me to do something I’m not comfortable with doing?”

They were three sisters at their grandmother’s table, playing cards in the afternoon. The game was smut or pitty pat, with a dish of flour set out. Lose a round, and get a dab in the face; once your face was covered, you lost the game. They sat, cheeks half-white, like costume ghosts. Whitney and her sisters spent a lot of time here, while their mom worked two jobs at once and went to nursing school. She was a cashier at Schwegmann’s grocery. She was an office cleaner. She was a sitter for older folks. She was a clerk at Super Stop, where she met the real estate agent who eventually sold her a house of her own.

Raven was the oldest but seemed like the baby, good-natured and sweet. Then Whitney, caring, introverted, but with a playful streak; call for her and you might find her hiding in the closet, nestled into the softness of her mother’s clothes. Then Kalia, outgoing, unafraid to speak her mind. They imitated their mom’s discipline. “Do you want a whupping?” they’d say, cackling. They wriggled into itchy stockings for church, survived services by pointing out the gaudiest of the older ladies’ hats, festooned with feathers and tulle. They helped their grandma pick through dried beans for stones.

Raven and Whitney both had sickle cell, Raven hospitalized more often, sometimes for weeks at a time. It made her mom feel helpless, to see her daughter in such pain. She remembers once watching two nurses making fun of her child’s veins, collapsed from so many IVs, laughing, saying: Should we try sticking her here? How about here? She called the doctor and put a stop to that.

Raven was working as a hairstylist when she developed a pain in her leg that became an ulcer. It was a vicious circle, the lack of blood flow damaging tissues, which allowed bacteria in, which immune cells couldn’t fight off because of the lack of blood flow. A nurse came to clean the wound every day. Her doctors tried a skin graft, but by then an infection was already moving through her veins. She died of sepsis on May 23, 2009. She was 24. Her family put one of her beauty shots by her urn, Raven in a blue dress, smiling that smile of hers that told you she meant it.

Whitney was pregnant with Christian at the funeral, just starting to show. She couldn’t stand to be touched, to feel yet another hand on her shoulder, hear yet another person saying they were sorry for her loss. She’d had no idea Raven had only a few days left. She’d thought the ulcer was treatable, that everything was OK. She hid in the hallway, trying to breathe.

The shock affected different family members in different ways. Not long after, while heading to work along the interstate, Whitney and Kalia’s mother heard a voice telling her she should drive off the road. That wasn’t part of herself, she knew, but the enemy — the devil, striking while she was weak. She pulled over, called her pastor’s wife, and they prayed together over the phone.

Kalia had been excited at Whitney’s first pregnancy. She and Raven had hugged their sister on the porch of their mom’s house, squealing. But when Whitney got pregnant with Raelyn, in 2011, Kalia was angry. “She nearly died with Christian,” she said.

Kalia became detached, threw herself into her communications degree at Louisiana State University, was uninterested in what was going on in Whitney’s body as her belly grew. This was her big sister, with whom she’d shared a room, who’d eaten the grits and the liver she didn’t like so she wouldn’t get in trouble for not finishing her plate. “I kind of acted like she didn’t exist,” Kalia said. “If this was the one that took her out, I’d already grieved her.”

Whitney wanted to name the baby Raven, but Kalia said it was too soon.

When Whitney got pregnant with Caidence, she didn’t tell her mom and sister for a while. She’d met Claude on Tinder; there was a soulfulness to him, a gentleness. He made hip-hop beats, lost himself in video games. She wrote enigmatic meditations in the Notes app on her phone. He was a veteran, working as a truck driver. She’d bounced between jobs, hating the deep-fryer at Wendy’s, peering into other families’ lives while developing photos at Walmart.

On their first date, she brought along her two kids, as a kind of test. He passed. Later, whenever she stayed over at his place, he’d make Christian and Raelyn a pallet of blankets and pillows on the floor, half fort, half nest. They were there when that crazy storm hit, in August 2016, dumping three times as much rain as Hurricane Katrina, when Whitney’s mom had to wade through chest-high water to get out of her ruined house. Claude’s apartment was safe, and they stayed.

Caidence was born on May 9, 2017. Kalia came in from Texas, where she was working as a TV producer, sat by Whitney in the hospital, the baby bathed in blue incubator light to zap away her newborn jaundice.

So, Kalia asked. Had Whitney gotten a tubal ligation?

Yeah, Whitney said, they’d kind of forced her to.

Kalia was skeptical. She didn’t think that could be pushed on you, there were consent forms you had to sign. Mostly, though, she was glad. She knew that might sound harsh, but it was an expression of fierce love — the unstinting, straight-talking love we reserve for those we care about most. Remembering it, years later, it suddenly seemed like she was back in that room, shaking Whitney: “Even if there was some kind of forcing, I don’t care, because you literally almost died with all your kids.”

Then she let out a laugh of relief. “Like, they saved your life, in my mind.”

For much of the 20th century, sickle cell doctors weren’t focused on reproductive health: Many patients didn’t live long enough. It was “essentially a disease of childhood,” one hematologist wrote in 1960. Over a decade later, another specialist estimated the median age of survival to be only 14.

To the extent that childbearing came up, the conversation was often about preventing new cases of the disease. A child needs to inherit the mutation from both parents to have the illness; getting that variant from only one means being a silent carrier, not sick but able to pass it on. Knowing your status is important — but like other kinds of medical information, it can easily become a tool of coercion, too. Many were tested against their will. Linus Pauling, the Nobel-winning biochemist who’d first described how sticky hemoglobin warps blood cells, suggested tattooing carriers’ foreheads, so they wouldn’t fall in love and have kids.

If someone with the disease asked about getting pregnant, the predominant advice was not to. In 1971, an influential team of researchers wrote, in a top obstetrics journal, “Children born of sickle cell mothers are likely to become orphans and be supported by welfare.” They “unhesitatingly” advocated sterilization before pregnancy, abortion if conception occurred, and postpartum sterilization for anyone whose pregnancy hadn’t been nipped in the bud.

It’s hard to read that without thinking of eugenics. After all, state eugenics programs had the same explicit goal, of reducing the number of people receiving government support by preventing the “unfit” or “deficient” from having kids — a rationale that infamously led to over 70,000 Americans being forcibly sterilized, with the Supreme Court’s blessing, between the 1920s and 1970s. Those policies served as an inspiration for the Nazis.

Less well-known is the history of such procedures performed on a “voluntary” basis. Like abortion, sterilization as a form of contraception had long been prohibited in the U.S. Only when white, healthy, middle-class women took doctors to court in the 1970s did that begin to change. As Rebecca Kluchin, a historian at California State University, Sacramento, writes in her book “Fit To Be Tied,” the shift allowed some people to have more control over their reproduction, and eventually led to tubal ligation becoming one of the most common methods of birth control.

But it also sparked a new twist on an old kind of medical abuse: Instead of using explicit, government-sanctioned coercion, doctors began pressuring patients into giving consent. In medical records, it might look voluntary. In patients’ minds, it was not.

In the 1970s, doctors would seek consent while a woman was mid-labor, or on sedatives, writes Kluchin. They’d falsely claim the procedure was easily reversible. These weren’t necessarily sickle cell patients; they were often just low-income women of color.

She quotes an Ohio physician admitting that his team wouldn’t bring up alternative contraception methods “with a black welfare patient who had two or more kids.” If a Mexican American woman refused a tubal ligation, one Colorado doctor reported, physicians “would all stand around her bed every morning while on rounds and repeatedly suggest she have the operation.” When a California trainee told his boss that so-and-so didn’t want her tubes tied, the answer was: “Go back in there and see if you can talk her into it.” Indian Health Service surgeons would tell patients that if they didn’t consent to sterilization, they would die.

Meanwhile, life expectancy for sickle cell patients was creeping up. In 1972, the National Sickle Cell Anemia Control Act set aside funds for care. With newborn screening, doctors could identify patients earlier. With prophylactic penicillin and pneumococcal vaccines, they could give them an antibacterial boost. Because patients’ distorted cells can damage the spleen, preventing the release of pathogen-fighting swarms, infections had often been deadly; now, they became survivable. By the 1990s, the vast majority of affected kids were reaching adulthood. And with better prenatal care, maternal mortality was dropping across the board.

In 1996, the same journal that had published the paper “unhesitatingly” calling for termination and sterilization put out a new study — a revision of sorts, based on the latest evidence. “The previous practice of recommending avoidance of pregnancy or abortion to women with sickle cell disease … is not appropriate,” it said. Doctors “should support them if they desire to have children.”

Some, though, failed to keep pace.

When videographer Lukhan Cooper got pregnant in Chicago, in the mid-1990s, she went to see her obstetrician while she was both in labor and in a pain crisis. “He was trying to find a heartbeat and couldn’t find a heartbeat, and then he just started yelling, saying, ‘You have sickle cell, you’re not even supposed to be having kids, why did you do this to yourself?’”

When Shelethia Pettigrew, an accountant in Louisville, Ky., was getting a contraceptive shot after a stillbirth in 2010, her doctor spoke in no uncertain terms. “He said he would recommend I never get pregnant again, because the next one will kill me.”

When Las Vegas patient advocate Shabreon Howard arrived at the emergency room 10 weeks pregnant and in a pain crisis in 2013, she said, “The doctor that I had basically told me to abort my child, and that I was basically a horrible person for wanting to bring a child into the world.”

Whitney Carter lights up in the presence of little kids. It might be one of her bad days, but run into a 4- or 5-year-old and suddenly she’s chatty, trying to coax out a smile. “Hi, buddy,” she says to a boy at Caidence’s school. “I like your Mario book sack. That was my favorite game.” He was quiet a second ago, but now he’s lisping about Princess Peach and Bowser, and Carter is right there with him — the same sunny version of her who sings along to Michael Jackson in the car, perfectly matching the falsetto, hands punctuating the horn lines.

“Don’t allow others to add gray to the picture that is abstract in your mind,” she’d written, in one of her meditative essays — and that was how she saw it when doctors told her that because she has sickle cell, she shouldn’t have kids. She’d heard it when she was expecting Christian, and then a slight variation after she’d delivered Raelyn: Don’t do this to your body again. She was skeptical. What was so unique about her disease that made childbearing off-limits? All women were on a continuum of risk during pregnancy and birth. She never felt like she’d gotten a good explanation of why some people’s risk was manageable while hers was unacceptable.

She felt a similar distrust at the emergency room whenever she signed what she calls a “pain contract,” pledging not to take other drugs, drink alcohol, or see other doctors. It’s supposed to ensure that opioids are being safely controlled, but to her it felt like an ultimatum. “You can either sign the paper or, I think, they won’t treat you,” she said. She felt it after Christian’s birth when the doctor asked whether she wanted birth control as a pill or a shot, without pausing to discuss what she wanted overall.

The kind of estrogen in the injection she ended up getting turned out to increase your risk of blood clots — as can both sickle cell and pregnancy — and may have played a role in the pulmonary embolism that nearly took her out. In medical settings, she’d spent much of her life being dictated to. As she put it, “It feels like I’m on probation when I go to the hospital.”

So Carter was taken aback in February 2023, when the new doctor at her sickle cell clinic asked if she wanted more kids. The physician was Miranda Mitchell, a Black woman, born and raised in Baton Rouge. She’d lost a family member to sickle cell herself. She liked patients whom other, old-school doctors might feel threatened by, patients who asked questions, who engaged in the reasoning behind their own care.

Carter said she did want more kids — maybe one more — but that her tubes were tied. It wasn’t the first time Mitchell had heard that. Others had told her about tubal ligations or hysterectomies they didn’t necessarily want — seven of them, in her estimation, since she’d started at the clinic in 2022. Some took out on her their anger over what another doctor had done. Some cried. From looking at those patients’ files, the hysterectomies made a certain amount of sense to Mitchell: tragic but, in an emergency, understandable. “Unfortunately, it’s that, or die,” she said. The tubal ligations were harder to fathom.

Mitchell couldn’t go back and fix the past, but she could listen, say she was so sorry this happened, talk about what was still possible. Carter could try having her tubes reattached, though at 38, the chances of a successful pregnancy that way were lower than they would’ve been earlier on. Another route was in vitro fertilization, harvesting her eggs, introducing them to Claude’s sperm in the lab, and then implanting them into her womb, skipping her blocked fallopian tube. Carter would think about it.

Then, as Carter was mulling it over, for the first time, she met someone else who’d experienced something similar. She was at the local sickle cell advocacy walk when a woman came up and started chatting. Her name was Ebony Delmore-Sullivan, she was 34 and lived in Gonzales, a half-hour south of Baton Rouge, where she worked part-time at a jewelry store.

I haven’t had a major crisis in six years, Carter said.

I haven’t been in one in three, Delmore-Sullivan replied. Do you have kids?

Yeah.

I have one. One and done.

Carter did a double take. When you say “one and done,” that mean your tubes are tied?

Yeah, Delmore-Sullivan said.

Did you feel forced? Carter asked.

It was Delmore-Sullivan’s turn to do a double take. She’d never thought about that. Had she felt forced? She’d been 24, expecting for the first time. It was an easy pregnancy. She felt no nausea. She had no serious crises. There were no complications, besides a bit of mild back pain that she dealt with at home. Still, given her risks, her obstetrician recommended a scheduled C-section, and said it would be best to have a tubal ligation at the same time.

“He said that, you know, with sickle cell, you could possibly die with having a child,” she recalled. “This one might go good, the next one might not.”

He was her doctor. She figured he knew what he was talking about, was bringing up this option because it was the safest one for her. She didn’t really think twice. “I’m blessed with this one. I can go ahead and get my tubes tied and I’ll still be alive to see this child grow up,” she thought.

She loved being pregnant. She read her son all the Dr. Seuss books in utero, brought a speaker in while she was taking a bath so that he could listen to classical music, R&B, and gospel. She loved tapping her finger on the taut skin of her belly, and feeling him kick in response — a kind of mother-son Morse code. And then, in 2015, Taylen was born, 8 pounds and 7 ounces, 19 perfect inches long.

Now, every so often, seeing a baby bump post on Instagram, she gets a twinge of regret. She would’ve liked to have another kid, to form that special bond again. She felt it a few years ago, on a Sunday, when Taylen was 5 and the kids from her husband’s previous relationship were over to play. It was dusk, time for them to go, and he came to see her, asking if they could just stay for a few more days. No, she said, they had to go home. He started to cry, and said he wished he had brothers and sisters, who would be there all the time, who would never have to leave. She went into the bathroom, so he wouldn’t see her cry.

No, she hadn’t been forced, she said. It was her decision. She could have said no. She just wishes the conversation with the doctor had gone differently. She wishes he’d given her more options. She wishes he’d said it could be possible for her to have more kids, that it’s been done before, that there are ways to help even if the pregnancy isn’t as simple as her first. She wishes he’d said he would monitor her closely, that he might put her on bed rest if issues came up. She wishes she’d known more women with sickle cell who had kids, who could’ve painted a fuller picture. It was her decision. She just would have made a different one if she’d had more information.

Was that informed consent? In an ideal world, the forms that Carter and Delmore-Sullivan had signed would have obviated the need for that question. The documents stated that sterilization should be considered permanent, that there are temporary methods of birth control, that the surgery carries risk, that deciding against tubal ligation would not result in care being withheld, that consent could be withdrawn at any time. Since the late 1970s, the federal government has required anyone on public insurance to sign this agreement at least 30 days before sterilization, to prevent doctors from seeking consent during labor, say, or while a person is on sedatives.

But there are still issues of autonomy. The waiting period prevents some people who want tubal ligations from getting them, and does not eliminate the possibility of pressure. Researchers who study consent know how subtly coercive language can creep into even well-meaning doctors’ explanations. It might lurk in the emphasis of one option over another, or in forgetting to view the patient as the utmost expert in their own hopes and desires, even if those preferences don’t align with the physician’s. As Kavita Arora, an OB-GYN at the University of North Carolina and past chair of the American College of Obstetricians and Gynecologists’ ethics committee explained, “If your intent is, ‘I don’t think this population should be having children’ or ‘my worry about their pregnancy risks supersedes their own reproductive goals’ — that’s where we start getting into problems.”

It might also lie in the framing of uncertainty, which is slippery even in less extreme situations. “There’s this counseling, in sickle cell disease in general, when patients are doing something that a clinician doesn’t agree with. I call it the Sickle Cell Death Threat, which is like: ‘If you don’t do X, you are going to die,’” said Lydia Pecker, interim director of the Johns Hopkins Sickle Cell Center for Adults.

But maternal mortality for people with the condition is not actually as common as those conversations make it sound. In relative terms — when compared to the statistics of people without the disease, and especially those who aren’t Black — it’s whopping. A 10-fold risk! A 26-fold risk! In absolute terms, it remains rare, happening in 0.13% of deliveries to those with sickle cell, or 1 in 800. That remains unacceptably high, and in order to make informed decisions, patients need to understand the possibility of severe complications, some of which can be life-threatening. They also need to know about the ways those risks can be mitigated. But that literature is complex and evolving; some doctors don’t know much about it.

“Many Black women don’t have access to high-quality medical care, and so that constrains their ability to make voluntary and free decisions about their childbearing,” said Dorothy Roberts, professor of law and sociology at the University of Pennsylvania. This isn’t abstract. Sickle cell patients often talk about falling off “the cliff” — graduating out of pediatric care and being unable to find an adult specialist. It happened to Tonya Mitchell, when she was living in Little Rock, in 2008. She wishes that when her obstetrician had recommended removing both ovaries, she’d paused, sought a second opinion. She wishes she’d had a hematologist to consult.

On paper, both Carter and Delmore-Sullivan attested that they’d given informed consent. That’s what stays in the medical record, health care’s fossil layer. The soft bits — words spoken, nonverbal cues given — mostly aren’t preserved. They remain in people’s memories, but those can be fickle. Even when a patient tells a different physician about what happened, it might not end up written down. The discussion Carter remembers with her new doctor, about reversing tubal ligation or trying IVF, is nowhere to be found in the official summaries of those appointments.

Neither Carter’s nor Delmore-Sullivan’s obstetricians responded to multiple emails, texts, and calls. Their intentions are impossible to know. What happened is a matter of interpretation. Carter uses the word “forced,” but qualifies it. Delmore-Sullivan rejects it outright. Each one described meeting the other as a relief, finally talking to someone who understood.

The border between medical advice and pressure is contested terrain. What a doctor says and what a patient hears aren’t always the same thing. There’s a power differential, easily exacerbated by race, class, and chronic illness, an imbalance that medicine needs to actively work against. Every appointment is an act of translation, a game of telephone, critical messages potentially garbled by the setting alone. Seeking true informed consent can be radical, based not just on explaining but on deep listening. That’s what Carter remembers most about her pediatrician. “She never discredited any patients. She always wanted them to live an abundant life.”

It’s an anomaly for people who are often told, unequivocally, what they can’t do. You can’t play sports. You can’t go swimming. You can’t get pregnant. Shirley Miller couldn’t blame her husband for signing off on her sterilization, back in 1984; he’d been told that otherwise she would die. The threat was familiar. It had been a constant weight, a dissuasion. She didn’t travel, for fear of health complications. She avoided making friends, for fear of disappointing them, just as others avoided falling in love.

“They would say that people with sickle cell would live to be 18. And then they said 21. And then it went up to 30. So I’m 30, and I’m thinking I’m going to leave this earth. That fear — that was my whole attention span,” Miller said. “Well, I didn’t die at 30. I didn’t die at 31. So at 32, I changed my mindset. I said, ‘I’ve spent all this time waiting to die, and I’ve wasted my time. There are things I should have been doing, things I could have done.’”

She moved from Palm Beach to Dallas. Her family thought she’d lost her mind. She took a job with an airline company, and began flying. She started going to concerts. She made friends. Eventually, she took up ballroom dancing. “I stopped focusing on dying, and started focusing on living.”

It was a special occasion in the Carter household: Claude was home from his new job as a trucker. A few days off, then he’d leave for another three weeks over the road. He was standing by a steaming wok, chopping shrimp and scallions for rice, instructing Raelyn to pat fish fillets dry and dredge them in spiced flour. When they’d first started dating, Whitney hadn’t trusted his cooking, but that was seven years ago. Now, she knew better, knew to look forward to his meals.

Christian, 14, had just come in, practicing his basketball moves, swiveling on his feet, dunking a nonexistent ball. Whitney was both FaceTiming with a sickle cell advocacy friend and trying to tidy the living room. “Raelyn, your book sack goes in your room,” she said, looking up from her phone. “Caidence, that your homework you got on the floor like that?”

Caidence was doing her best to foil her mom’s efforts. She was playing dentist, peering deep into people’s mouths — “Gotta look at all them little babies!” — she was wiggling over the back of the couch, she was scribbling her name in huge, scraggly 6-year-old letters on paper crumples, she was bouncing everywhere and climbing onto chairs to try to keep a balloon from touching the ground.

It was mid-October, nine months since Whitney’s doctor had asked if she wanted more kids, if she wanted to look into IVF or tubal-ligation reversal. But nothing had happened about it since then: All her energy had gone into just staying afloat. There’d been an issue with Claude’s work, and they’d fallen behind on rent. There’d been an issue with the landlord, and one morning Caidence had come into their bedroom brandishing a notice she’d found on the door that said they had to move out.

It was hard not to think about, even during a celebratory dinner. “What, Whitney, we got three months?” Claude asked.

“No, we got 45 days.”

“45 days? For real? We need to be packing.”

“That’s what I’ve been telling you.”

He looked around at everything they’d need to box up or sell: The table he was sitting at. The couch where Whitney, Christian, and Raelyn lounged, picking at the last of their fish. The wedding pictures tacked up on the wall. In a few days, he’d be back on the road, hauling tanks of oil westward, then hauling who-knows-what up through Missouri and Kentucky and Ohio, leaving Whitney to parent solo.

She’d had to dig into their savings to pay the bills. When the kids finished with school and volleyball and football, she’d been buckling them into the backseat for a few hours of DoorDashing, to help scrape together the few hundred bucks they owed. They were going to get out of here. They were going to move to Texas. “Bigger, better opportunities,” Claude explained. They might crash at his brother’s house in Oklahoma first. Eventually, they wanted to own their own home. Claude dreamed of opening a food truck, of working for no one but himself.

A tubal ligation reversal can set you back $7,500. IVF can easily cost double that. Neither is necessarily covered by insurance in Texas or Louisiana. Sometimes, Whitney still thought about having another child. She pictured Caidence as a baby, eyes scrunched, cheeks chubby, perfectly proportioned for the crook of your arm. “I wouldn’t mind having a little bundle of joy,” she said. But not now. It wasn’t the right time. She knew, given the stress she was under, it might never be the right time. She was making peace with that.

Just a few weeks earlier, she’d been apartment-hunting on her computer when Caidence appeared in the doorway. It was around 9, she should have been asleep, but here she was, fidgeting in her PJs, twiddling the beads in her hair, saying she wanted a baby brother or sister, someone she could play with. There was so much Whitney could have told her. Instead, all she said was, “Go to bed.”

This story is part of ongoing coverage of reproductive health care supported by a grant from the Commonwealth Fund.