Here are some things A. was told when she arrived at the hospital one night in June 2023. That she couldn’t have the pain medicine she usually got for a sickle cell crisis because she was six weeks pregnant, but she could have Tylenol. That if she just took her blood thinner everything would be fine. That she needed to leave, and if she still felt bad by the time she’d wheelchaired out into the parking lot, she could turn around and check herself back into the emergency room.
She asked to speak to someone higher up. She was angry, but mostly she was in pain: crying pain, pain that made it hard to move and hard to speak, pain that other people couldn’t understand, that sometimes made her wish to be in a coma, anything to make it go away. Her blood pressure was spiking. She knew from experience that, left untreated, this kind of crisis could lead to a seizure.
Inside her blood vessels, the cells that were supposed to shuttle oxygen through her body were contorted, from their usual, squishy rafts of hemoglobin into rigid crescents. The result was microscopic gridlock. What she was feeling was flesh starved for energy, the inflammatory SOS that goes out to try to prevent tissue death. Blood thinners could reduce her risk of clots, but they wouldn’t stop the pain. Taking a Tylenol was like using a squirt gun against a house fire.
She pleaded. She dialed her father and husband, as backup in case she blacked out. But the staff just kept insisting that other pain medication might harm the baby. They still wanted her to leave. The longer this went on, the more scared A. became. She was scared of what might happen if this crisis kept worsening, and of the complications she could get from having sickle cell and being pregnant — scared enough, eventually, to tell the team she didn’t feel safe keeping this pregnancy. She knew Texas had an abortion ban on the books, but now, in an emergency, the fact that she would probably terminate seemed relevant.
Some employees told her that wasn’t an option, it was against the law. Others were understanding: Do what you have to do for your health, they said.
The reaction that shook her most, though, came from a pain management specialist, who came into her room with an offer, a bargain of sorts. “He told me that he would give me pain medicine while I was in the hospital if I decided to keep the baby. And I had to pray with him,” said A., who asked to be identified only by an initial to shield her from the stigma that surrounds abortion in Texas, where she lives.
“It’s almost like making a deal with the devil,” she went on. “When you have to do something you really don’t want to do, but at the same time you really need something. If I said no, he really would not have written a prescription.”
She had no other choice. She bowed her head, and pretended to pray. She wanted another child, but a few weeks later, she was flying to Boston for an abortion. If this was how she was treated when she went to the hospital, she worried she might not survive the pregnancy.
“It’s almost like making a deal with the devil. … When you have to do something you really don’t want to do, but at the same time you really need something. If I said no, he really would not have written a prescription.”
Often, the pressure goes the other way. Again and again, people with sickle cell disease are told they cannot or should not have kids. They’re told that if they get pregnant, they’ll die. They’re told that the best option is to get sterilized. They’re told that it would be selfish to bring a child into the world, given how often they’re in the hospital.
“Any doctors that I had as a teen and young adult, they basically made it seem like I would have no choice but to abort my child,” said Shamir Kimbro, 32, who works as a manager at a call center in Tampa, Fla., but grew up in Nashville, Tenn. “Or I would not have any viable pregnancies. Or it’s not in the best interest for a person with sickle cell to have children at all.” She now has a healthy 10-year-old, and runs a Facebook support group for moms affected by sickle cell.
“My OB told me that I needed to get a partial birth abortion,” said April Ward-McGrory, a 43-year-old patient advocate in Cordova, Tenn. “Because of the medications that I was on, and how far along I was, they thought that he would have facial deformities, and that he wasn’t formed in the womb the way he was supposed to. I did not do it. And my son was perfect.”
“I listened to you guys, and y’all told me I can’t have no kids,” said Ashebia Lemonier, 40, a former assistant teacher in Brooklyn, N.Y. “Then I finally fall in love with someone, break my virginity, and now I’m pregnant. I’m like, y’all told me that wasn’t possible, and now you blame me for getting pregnant and want me to abort my kid?”
Those experiences can be hard to square with A.’s, and with the post-Dobbs American landscape more generally. Abortion bans stretch across vast swaths of the country. In some states, terminating a pregnancy can be a felony; some physicians are too scared to even bring up the possibility. There’s a kind of whiplash there, sickle cell patients pressured to get an abortion by some doctors and pressured not to by others. But in all of these stories, someone’s wishes were disregarded, some measure of control over their own body yanked away. It sounds contradictory, but a similar strain of paternalism affects the person who’s pressured to keep a pregnancy and the person who’s pressured to end one.
It isn’t limited to people with sickle cell. The disease acts as a prism, making visible patterns that might otherwise go unnoticed. Sometimes, the very same physician swings both ways. Lesly Chavez, a 30-year-old hair stylist in Houston, saw a new obstetrician when she found herself pregnant with her second child in spite of the contraceptive injections she’d been getting. “He made a comment when we first met that if I were to survive this pregnancy, he would retire, because he’d have seen it all,” she recalled.
She brushed it off. She’s the daughter of immigrants from El Salvador. She’s used to discriminatory comments at the doctor’s office, being told that she can’t have sickle cell because she isn’t Black, having her pain dismissed. Then, at her first postpartum appointment, when she asked for a tubal ligation, he said no, she was too young.
For A., the decision to get an abortion was made in a matter of minutes and over the course of her entire adult life.
She was in her early 20s the first time she got kicked out of an emergency room. She’d waited 16 hours before being seen and prescribed the opioids that are standard for acute sickle cell pain. Not long after that, a nurse came and woke her up and told her she needed to leave. A. replied that she wasn’t comfortable with that, she was woozy, she’d be driving under the influence. “She said to me, ‘Well, we need this bed, and you have to go,’” A. recalled. “And that was that. I didn’t know any better. I said OK, because I didn’t feel like I could fight.”
It was 3 or 4 in the morning. The nurse removed her blood pressure monitor and IV, and A. began to walk, dazed, out into the parking lot. When she woke up, she was sitting in her stationary car: She’d fallen asleep at the wheel before she could turn on the ignition and get on the road.
That night she learned that her pain and well-being could be disregarded by the very people who were supposed to help. As a kid, hospital staff had been solicitous, caring, eager to make her comfortable; as an adult, this kind of scenario arose over and over. It didn’t happen all the time. When she’d first gotten pregnant, doctors had seen her once every two weeks, to monitor her for the various complications associated with having sickle cell and carrying a child. She was at increased risk for stroke, anemia, preeclampsia, pulmonary embolism — and the prenatal care she got was reassuring. Whatever happened could be caught early and treated, the danger mitigated.
After her two deliveries, though, that promise wasn’t kept.
There was the time she was recovering post-surgery — a corrective procedure for tissue that had been strangled from loss of blood flow — and she felt a pain crisis coming on. She pressed the call button, asking her nurse to page the doctor. But the nurse said no and walked out of the room.
There was the time, not long after the birth of her second, when she got to the emergency room and could feel something strange and terrible about to happen inside of her — a bodily premonition. She was in too much pain to move. She kept pressing the call button, but no one came. She tried yelling, but her voice was strained. She resorted to kicking her shoe out under the curtain she was behind, hoping someone would see it and realize she needed help. No one did. When she woke, the doctor said she’d had two seizures; someone passing by happened to see her convulsing and ran for assistance.
All of that was in her mind when she arrived at the hospital that night in 2023, her pain bad enough that they gave her a wheelchair, but little else besides Tylenol. When they told her to leave, the words had a grim familiarity. She wouldn’t fall for that again. When the pain doctor challenged her, saying abortion was a sin, that God blesses each person in unique ways, she heard a kind of directive she knew all too well. “I have all these people coming at me telling me what I can and can’t do with my body,” she said. “I just felt attacked.”
But she also heard the nagging pressures of motherhood, the expectations others put on you, the expectations you put on yourself. When they babysat, her relatives told her, half-joking, half-serious, that she better not have a third child, they couldn’t handle helping with any more. Some family members, when she’d announced she was expecting her two kids, had reacted more with concern about complications than with joy. Congratulations, but.
She thought about the unrelenting string of crises she’d had after the birth of her youngest, how she’d spent a year hospitalized for weeks at a time. She was admitted so often she felt like she lived there. She wanted nothing more than to be with her newborn — a physical hunger, a need — but she couldn’t. It left her desolate. She kept wondering if the baby would know who she was when she got home.
She didn’t want to burden anyone else. She couldn’t help but think that if she died during this pregnancy, her husband would be left caring for three kids alone.
The doctor told her there were other ways of finding support if she had this child: She could join a church. She could hire a nanny.
She didn’t have that kind of money. Already, she and her husband had been talking about how she wasn’t sure she could have another kid. She didn’t tell the doctor that he was part of the deciding factor.
“I have all these people coming at me telling me what I can and can’t do with my body. … I just felt attacked.”
She was fighting against time. The longer A. waited, the more expensive and complicated the abortion would be. One clinic in New Mexico said they had no openings for weeks, they were all booked up with Oklahomans and Texans. Another turned out to be a crisis pregnancy center, pretending to offer abortions but actually trying to convince her to change her mind, which creeped her out. A standalone clinic in Boston said it couldn’t see her because of her sickle cell, and instead referred her to a hospital. That was where she ended up going.
She landed in Boston amid another pain crisis, and went straight to the emergency room. The cost of the travel and the procedure had mostly been paid for by a nonprofit that helps fund abortion care — in many states, insurance companies aren’t allowed to — but A. and her husband still had to dig into their savings. (She provided copies of travel and medical documents to STAT to corroborate her story.) Her husband was there with her, caring for her, bringing her food, sometimes ducking out to a museum to snap pictures of artworks, so she could feel like she’d glimpsed a sliver of Boston from her hospital room.
What stuck out about her ER ordeal back in Texas was how misguided the doctors had been, not just morally, but medically. A. knew from her previous two pregnancies that small doses of pain medication were permissible — preferable, in fact, for the fetus to be briefly exposed to opioids than for the mother’s entire body to be wracked by pain and all the physiologic stress that could come with it.
When the federal government began discouraging opioid prescriptions in response to the overdose crisis, the American College of Obstetricians and Gynecologists responded with concern. Narcotics shouldn’t be overused, the group said, but underusing them could be a source of danger, too. Sometimes, during pregnancy, prescribing opioids is safer than not prescribing them. A sickle cell crisis was one of the prime examples.
The trip was supposed to last only a few days; she ended up having to stay 10, waiting until she was well enough to travel again. One moment stood out: A nurse came into the room and asked if she was in pain. She said yes, but that she’d just gotten some medication, and she knew from her care back home that there was nothing else they could do for another few hours. The nurse looked at her, and said no, you don’t need to be in pain, we can figure out another way to help you; I can tell just from looking at you that you’re in agony.
To A., that was wildly memorable: For her pain to be taken seriously as a medical problem that needed solving, rather than dismissed as some sort of moral failing. A few days later, she flew home. She still thinks about having a third child. She’s still young. Maybe if Texas abortion laws change. Maybe if doctors start giving her care she can trust.
This story is part of ongoing coverage of reproductive health care supported by a grant from the Commonwealth Fund.
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