As a small child, Pat Wells just thought she had a bad back. That was what the doctor said when her mother took her to the hospital. A bad back. Her mother would rub it with alcohol to help her go to sleep. They didn’t know that she carried a genetic blueprint for a misshapen molecule; that her hemoglobin proteins, which carried oxygen through her body, were catching on each other, forming unwieldy chains, warping the red blood cells they rode in, blocking her circulation.
Now, throughout the U.S., hospitals take a prick of blood from every newborn’s heel and test it for sickle cell disease. Catch it early and you can start on drugs that help you live longer. But in Missouri of the 1960s, mandated screening was still over two decades away.
She only got a real diagnosis after her oldest brother James got shot. She was 10. He was 27, a father. He loved piling his younger siblings and his own kids into the car to take them to the drive-in. Just a few months earlier, they’d seen “Blacula,” about an African prince who goes to Transylvania to seek Dracula’s aid in ending slavery, only to become a vampire himself. Not age-appropriate, necessarily, but she loved it, the frenzied campy scenes of corpses coming to life.
Now, James was gone. She remembers watching her parents climb into the ambulance with him, and then coming home to say that he hadn’t made it. Her first terrible pain crisis set in not long after the funeral. She landed in a children’s hospital this time, where they stuck her with needles and eventually told her she had sickle cell disease.
It was 1973, the year forced sterilization burst into the news. Two sisters in Alabama — one 12, the other 14 — had been taken to see a doctor for what their mother thought would be temporary contraceptive shots. Instead, they were given a surgery that would prevent them from ever having kids. It became a national scandal, the case that opened the public’s eyes to the medical coercion that had been going on for 50 years. Rules were enacted to prevent it from happening again. Anyone on government insurance, for instance, had to sign a consent form at least 30 days before getting sterilized, to make sure there was informed consent, and ample time for a patient to reconsider.
For Wells, though, that didn’t help. Around 1990, when she was 26, she went to see her OB-GYN for what she thought would be temporary contraceptive implants in her arm. Instead, her doctor told her his team had decided against those hormone-releasing rods, and made an appointment for her to get a tubal ligation. There wasn’t much discussion. She hardly knew anything about the procedure. As far as she understood, this was just what she had to do — and 30 days later, she came back for the operation.
She didn’t know then that this was part of a pattern of doctors pushing women with sickle cell toward sterilization procedures they weren’t sure they wanted, didn’t fully understand, or both. In interviews with STAT, seven patients from four different states have shared such experiences firsthand, and sickle cell specialists report having heard of dozens of other people who’ve lived through the same thing. Yet other physicians, upon hearing these stories, sometimes say they might be less instances of coercion, more cases in which a patient simply changed her mind, ruing a decision she’d freely made at the time. Such post-sterilization regret is, after all, common.
What’s striking about Wells’ account is that arguably, both are true, neither invalidating the other, but rather underscoring the various ways that particular medical encounter went wrong. “I do regret it,” she said, and she does wish she’d acted differently herself. But it’s also a story of an ethical breach, a decision about her body she wasn’t given the autonomy to make.
She’s 61 now, and a private person. She’s wary of being contacted by strangers on the internet. She spoke on condition that her town of residence be omitted. But she wanted this story told, to prevent what happened to her from happening to anyone else. It took place over 30 years ago now, but it still bothers her. “I felt as though I was almost forced to do it,” she said. “Like I had no other option.”
The first time Wells got pregnant, she was shocked: Her doctors had told her she couldn’t have children. But there she was, pregnant at 19. The baby had come two months early. She’d checked into the hospital for a blood transfusion — a frequent therapy for sickle cell — and had gone to the nursing station to ask for something to help with a headache. “Next thing I know, I wake up, and I’m tied to a bed,” she said. She’d blacked out, had a seizure, and been given an emergency C-section. “The nurse says, ‘You had a baby.’ I said, ‘I did? What is it? Where is it?’”
When doctors pushed sickle cell patients toward tubal ligations, that kind of complication was often the reason they gave: The illness was linked with an increase in serious maternal risks. Even if the first pregnancy was easy, some were told the next one could be deadly, so it would be better to get their tubes tied now. Those risks were also often mentioned when patients were told that they could not or should not have kids in the first place.
But Wells’ next two pregnancies went smoothly. She had no complications, and no sickle cell pain. It almost felt to her like pregnancy was warding off the symptoms of her disease — though she knew, from the first one, just how perilous gestation and birth could be.
By the time her youngest was born, she’d broken up with her kids’ dad for good. She was 26, a single mom of three, just scraping by. She’d always wanted four kids, but now wasn’t the time. There was no way she could deal with another baby at the moment.
Her doctors had taken her off the pill years earlier because of its side effects; she’d tried condoms and had gotten pregnant anyway. She needed another option, one that would work. Hence the arm implants, which were newly available at the time. But then suddenly, the doctor was talking not about something long-acting and reversible, but about something permanent.
The whole conversation happened very quickly. She’d been waiting a long time, an hour perhaps. Finally, the doctor came out, took her to a little triage area, and said his team wasn’t going to insert the hormonal rods in her arm after all. He kept talking about having made the decision with others, but who those others were, she had no idea. For all she knew, he could have made this determination by himself. Her two choices, he went on, were either abstinence or getting her tubes tied. For the tubal ligation, there were papers she had to sign. “Wasn’t even five minutes,” she recalled.
She signed. “At the time, I was OK with it. I had three kids, I was a single parent, it seemed like the best thing,” she recalled. And yet even then, she had some ambivalence. “It was scary, but I’m like, I guess I have to do this, for health reasons, like this is my only option. That’s how I felt.”
It’s true that contraceptive options weren’t endless. Wells’ doctors may have been limited in what they could offer. Some medical practices were slow to incorporate new methods. Controversy about an infection-worsening intrauterine device in the 1980s had made some people wary of that whole category of birth control, even if not all IUDs came with that side effect. The hormone-releasing rods that Wells had been slated to get would be eventually taken off the market due to removal issues. It’s hard to know what her physician — or the others he said he’d consulted — had been thinking. He didn’t tell her why they’d changed their minds about the arm implants, why they’d decided on tubal ligation instead. “They didn’t give me a reason,” she said.
Only later did Wells begin to wonder whether her health was actually the priority. Though official eugenics programs had ended in the 1970s, her mind sometimes drifted to their arguments. She sometimes wondered whether the doctors made this decision for her because she was Black, or because she was on Medicaid, her health insurance paid for by the government. “The less children I had, the less the state had to pay for,” she said.
She knew a thing or two about inequality. Her parents had grown up in Mississippi. Her mom didn’t talk about it much, but when she did, she talked about the hard things, the segregation, the way she had to drop out of school every year to pick cotton. Sometimes, in the places her mind went as she thought back on her surgery, that world didn’t seem so far away.
What made her really rethink her tubal ligation was falling in love again. It happened twice in her 30s. By then, Wells had started her career as a dental assistant. She’d bought a house. Then she met someone outside a club, while her cousin was visiting from out of town. She was looking good that night, in a red and white dress, with a jacket and sandals to match. It could be hard for her to find clothes, because she was so small, but that dress fit just right. She and this guy got talking — she doesn’t remember what sparked the conversation, just the feeling of it — and it kept going, and going, and going, so long that when they went back inside, it was closing time, the crowd thinning out. They had time for one slow dance. “Just tell me why the hell somebody wants to tear your heart apart,” Tevin Campbell sang, as they swayed.
They saw each other for years, were engaged for a few months, but then it didn’t work out. Later, she found out he’d gone on to have a child with someone else.
It happened again with someone she’d known in school. They ran into each other in the neighborhood and hit it off. He was a fireman, and six-foot-five. They began spending time together, listening to music, cooking, watching films, talking about their relationships. They were good together, compatible. But they decided they should just be friends. “He wanted to be with me, but he wanted kids,” she said. “That was the issue between us.”
It’s the classic arc of sterilization regret: meeting someone new, wanting to start afresh, wishing you could have another kid. It’s common. In some studies, a quarter of women who’ve gotten their tubes tied or removed later report wishing they could undo it; in other studies, it’s more like a tenth. Among them, many feel something similar to what Wells felt in her 30s. “Probably three-quarters of the consultations for reversal happened because the patients have divorced and they have a new partner,” said Julio Pabon, a fertility doctor in Sarasota, Fla., who performs surgeries to reattach severed fallopian tubes.
Wells knew that reversing a tubal ligation was possible, but that the procedure wouldn’t be covered by insurance, and she didn’t have that kind of money. Plus, the surgery didn’t always work — and though she never looked into it, if she had, many surgeons would have told her she wasn’t a candidate. She would have been considered too high risk, because of her sickle cell.
Still, her mind kept going back to that moment when she was 26, and how young she’d been, when she’d gotten a surgery so permanent, how she’d hardly lived at all by then. Sometimes, the way people talked about it stung. “They make you feel like you’re less than a woman,” she said.
Wells is a grandmother now, long past any inkling of having more children. She’s outlived the age by which sickle cell patients of her generation were told they could expect to die. She’s worked in dentists’ offices and botanical gardens and for a staffing agency. She’s taken trains from Missouri west to Nevada and east to New Jersey, through mountains red as rust and whole landscapes blurred with fog. She gets good care from doctors she trusts.
But she still carries those memories of if-thens, of being in her 30s and thinking life might’ve turned out a different way. She wishes she’d asked more questions. She wishes her doctor back then had offered more information, more options, better communicated the permanence of the procedure. She wishes there’d been a class about how sterilization works and its implications. She wishes she had been at the center of that decision, consenting rather than just assenting.
It is easy to say that what happened in the 1990s is history now, that things have changed. But that’s what was said about the coercive sterilizations of the 1970s, that they were in the past, that there are now rules and protocols to keep it that way. What’s missing from that version of events is also what was missing from the doctor’s interaction with Wells, all those years ago: not only information, in all its nuance and complexity, but also an interest in listening.
This story is part of ongoing coverage of reproductive health care supported by a grant from the Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.