Lynae feels a wave of nausea at the scent of baking bread drifting from a Subway she passes on her way to the hospital clinic. Still, it’s no match for the excitement she feels from the stirring in her belly. When she arrives at the clinic, she’s met by her husband, Paul. (Lynae and Paul asked that we use only their first names.) They lock hands and sit amid the hum of the waiting room, making bets on their baby’s gender. Lynae, then 34, wants a boy; Paul, then 32, suspects it’s another girl — a sister for their daughter Avery, then 2. Lynae is here for her 20-week ultrasound, the moment when many expectant parents learn the gender of their child. Finally, she’s called.
Lynae lies on the examining table, feeling giddy as the ultrasound technician squeezes jelly onto her swollen belly. Her ears perk up at the thump of a heartbeat. She and Paul have their eyes fixed on the monitor: head, arms, legs, stomach — their first glimpse of their future child.
The sonographer moves down for the reveal. It’s a girl. They look at each other and laugh.
Fifteen minutes into the ultrasound, the technician lingers around the baby’s head.* She’s having trouble getting a measurement and calls for help. The couple exchange reassuring smiles. The second tech enters; she has a stern demeanor and quickly takes over. She asks if they had any preliminary genetic testing. “Of course,” Lynae replies. “Everything was normal.” Panic crawls into Lynae’s chest. The first tech attempts to calm her, saying the hospital does longer ultrasounds these days.
When the exam is over, Lynae, who works as an epidemiologist in the same Indianapolis hospital, retreats to her office upstairs. She greets a coworker, but she’s unable to concentrate. Her phone rings. It’s her ob-gyn; the clinic has phoned her. Lynae bursts into tears. Her fetus has an increased nuchal fold, an excess of fluid on the back of her neck — an abnormality associated with congenital heart disease and a range of serious chromosomal defects.
Lynae’s legs feel like jelly as she tries to stand, so her boss and a coworker escort her to her ob-gyn and set her down on the doctor’s brown leather couch. “Hopefully this is just a shadow,” her doctor offers. Once Lynae calms down, she calls Paul at work. “We don’t know yet,” he will often say to Lynae in the days ahead. “Nothing is wrong, everything is fine.” With each movement she feels in her belly, Lynae wonders if it’s true.
Prenatal screenings are among the most agonizing and anticipated moments of a pregnancy. A clear result means you can rest easy until the next round. A problem sets off a cascade of procedures — some providing clarity and peace, others only perpetuating uncertainty. A pregnant woman typically has routine bloodwork done during her first prenatal visit, which can identify such risks as anemia or diabetes. Many women, due to maternal age or family history, go on to do additional bloodwork between 8 and 13 weeks to screen for genetic disorders. When one of those screens flags an elevated risk, doctors will conduct additional screenings (amniocentesis or chorionic villus sampling, more commonly known as CVS) for Down syndrome, spina bifida, and other serious anomalies.
Still, certain abnormalities can’t be detected until the mid-pregnancy ultrasound, usually performed at 18 to 20 weeks, which reveals details of the fetus’s growth and anatomy. As with genetic screenings, if a problem is found on this ultrasound — as it was for Lynae — a woman is often offered amniocentesis. Results can take up to two weeks. Any positive result from the amnio means a referral to a specialist for further testing, which can take several more weeks to complete.
In a growing number of states, pregnant women who find themselves in Lynae’s position simply cannot wait. Almost from the moment they learn of potentially fatal abnormalities, they’re up against a clock, with an ever-narrowing window of time to consider all their options.
- “The emotional impact of knowing that your baby will die is different for every woman.”
In 1973, Roe v. Wade established the constitutional right to an abortion prior to a fetus’s viability outside the womb, typically 24 to 26 weeks. But in 2010, Nebraska became the first state to pass a law banning abortions after 20 weeks. Since then, according to the Guttmacher Institute, 15 more states have enacted similar laws. Generally, these laws permit an abortion after 20 weeks only in very specific cases: if the woman’s life is endangered, for example, or if the pregnancy was the result of rape or incest. Eleven of these states do not provide an exemption for women whose fetus is diagnosed with a fatal medical condition.
These laws effectively mean that many women who learn of potentially lethal abnormalities at or after their 20-week ultrasound face extremely limited options. They can travel hundreds of miles across state lines to seek abortions — often not a practical or financially feasible option. The Indiana ban, says Dr. Katherine McHugh, an ob-gyn who works in Indianapolis, “doesn’t give [a mother] very much time to prepare.” McHugh often has to send women to Chicago — Illinois allows abortions up to 24 weeks — which means her patients have to scramble to cover the costs of child care, travel, and lodging.
Or a woman can carry her non-viable fetus to term only to face a stillbirth or watch her infant die soon after being born. “The emotional impact of knowing that your baby will die is different for every woman,” says McHugh. For those who choose to carry their fetuses to term, McHugh offers perinatal hospice care: Once born, the babies at such hospices are fed and cared for, but invasive procedures that might prolong suffering are not performed.
In the last presidential debate, when Donald Trump was asked about so-called partial-birth abortions, he claimed that a doctor can “rip the baby out of the womb in the ninth month, on the final day.” This does not happen. But the small number of women who seek late-term abortions each year expose a little-explored corner of the debate over reproductive rights: laws that take a profound toll on women, like Lynae, who want to be mothers but who have been dealt a cruel hand denying them that possibility. These are women who did not envision themselves considering an abortion, until a complicated pregnancy made them confront its financial, emotional, and political impact.
Days after the ultrasound, Lynae finds herself at the mercy of time. A perinatologist — an obstetrician who specializes in high-risk pregnancies — does an emergency follow-up ultrasound, but reports inconclusive results. It could be a cystic hygroma, an abnormality that occasionally resolves on its own, or it could signal a serious problem and a poor chance of survival. The perinatologist performs an amniocentesis, and Lynae has to wait for those results. “It’s hard to do anything” when you’re waiting, Lynae tells me when I meet her at her home in July. “It’s hard to eat, it’s hard to sleep.” Lynae’s face is smooth and bare, her brown hair pulled back into a loose ponytail. She wears jean shorts and a T-shirt that’s the same color as her green eyes.
Doctors inform Lynae and Paul of Indiana’s 20-week cutoff. If she wants to terminate the pregnancy within the state, she has days to decide. She and Paul discuss it briefly, but they feel unable to make a decision until they know exactly how grave the problem is. “We weren’t ready to give up,” she says.
Lynae reaches out to a cadre of specialists and learns that a fetus with an increased nuchal fold has only a small chance of survival. One doctor also warns Lynae that if she wants a termination, she’ll now have to travel to Illinois, where abortions are legal up to 24 weeks. “If, you know, our amnio came back positive with a fatal genetic condition or a condition that would severely limit the child, then we would have terminated,” Lynae says. “But not knowing kind of threw us.”
- “Every dream you have is about the baby. Nightmares about the baby. And there is nothing you can do to help her.”
At 23 and a half weeks, Lynae recalls, the amniocentesis results come back normal, though this indicates only that her fetus doesn’t have any of the genetic disorders the amnio tested for — which may or may not be connected to the abnormal growth on the back of the neck. She’s relieved, yet terrified. Despite the normal amnio, subsequent ultrasounds show that nothing has changed. The scans continue to show the same abnormality on the neck.
Over the next few weeks, new issues emerge: an enlarged heart, decreased lung size — problems that rule out the idea that this could resolve on its own.
Lynae’s home becomes a hideout, a place she can escape the gleeful attention that pregnant women inevitably attract. On a quick shopping trip to Kohl’s, an older woman notices her belly and cheerfully asks what she’s having. Lynae is tall and curvy, yet she’s no longer proud of the way she fills out her maternity clothes. She can barely hold back tears. “I just wanted to crawl into a hole,” Lynae says. “You can’t hide as a pregnant woman…Everyone thinks that you’re going to be thrilled.” Experiencing a pregnancy when you’re worried the baby is suffering is harrowing, she says. “Every dream you have is about the baby. Nightmares about the baby. And there is nothing you can do to help her.”
At 31 weeks, a doctor new to Lynae’s team discovers that her fetus is severely anemic. A blood transfusion, an attempt to correct the anemia, is a success, and everyone is briefly hopeful. Then the anemia returns, and one doctor notices that in every ultrasound, the fetus’s tiny hands are clenched in a fist, a sign of severe brain damage resulting from a lack of oxygen (a consequence of the anemia). At that point, the doctors know that the baby won’t survive. “We were just waiting for her to die,” Lynae says.
Desperate for resolution, Lynae asks her ob-gyn to induce her labor. She’s firmly denied. That, she recalls being told, would be against the law — it would constitute an abortion.
Paul and Lynae name their daughter Annesly. They wait.
I spoke with many women who found themselves in a situation similar to Lynae’s. In March of this year, 15 weeks pregnant with her first child, Amber Kepperling learned there was a clot on her placenta. Her unborn daughter, already named Taylor, had an accumulation of fluid around her brain, indicative of a serious defect. A few days later, after seeing a perinatologist, Taylor was diagnosed with skeletal dysplasia and given, Amber recalls, no chance of survival.
A week later, while Amber, 30, was still waiting on results from a follow-up amniocentesis, Governor Mike Pence, the current Republican nominee for vice president, signed into law a bill — HEA 1337 — that prohibits abortions at any stage if they’re based on the fetus’s sex, race, color, national origin, ancestry, or disability. (The bill has since been temporarily blocked by a judge.)
One night, while Amber was anxiously awaiting the results of more tests, she poured out her soul in a Facebook post. Would Taylor die in her womb? Worse, would she have to face the “nauseating decision” of termination? What really shook Amber was the thought that politicians wanted to take “ownership” over her “overwhelmingly personal grief.”
Amber was receiving her care at Catholic hospitals, and throughout the testing, she recalled, none of her doctors informed her about Indiana’s 20-week abortion ban. (Neither hospital responded to queries.) “[W]e may soon not even have the choice to carry this nightmare out on our own terms in the state of Indiana,” she wrote in the Facebook post, referring to HEA 1337. The passage of HEA 1337, she told me in August, felt like a “dismissal of our daughter’s suffering.”
Finally, at 26 weeks, her doctor confirmed that her amniotic sac had ruptured, which, she learned, could potentially provide legal grounds for a termination in Indiana because of the risk it would pose to her physical health. But within days, Amber started to hemorrhage and was given an emergency C-section. While her ob-gyn finished and stitched her abdomen closed, a nurse placed Taylor on Amber’s chest. Amber lay in silence, rubbing her daughter’s forehead. Her husband, Dave, picked up Taylor to show her the White Sox game on TV and profess his love. Then he returned her to Amber’s chest, where, a few hours later, Taylor died.
Cyndi, a 36-year-old data analyst from Indianapolis who asked that we use only her first name, can recall her 22-week ultrasound in 2013 as if it were last week. She was told that something was wrong with her fetus’ heart. From a specialist, she and her husband learned their unborn boy had hypoplastic left heart syndrome, a rare defect in which the left side of the heart is severely underdeveloped. They were given a 50 percent chance that the child could survive to age 5 — if they put him through three high-risk surgeries. They were told that medical care for the condition would run close to a million dollars, an amount they couldn’t imagine affording.
Cyndi wanted to fly to Philadelphia and Boston to speak with doctors who have more experience treating this condition. But she felt cornered by the 20-week ban. “There is no time to process and make an informed decision; you’re forced to act,” she said to me when I met her in Indianapolis last summer, pushing the locks of her dark blond bob behind her ears. “By the time they started talking to us about how many surgeries he would need, and what his chance of survival was, we had kind of decided already.”
Cyndi and her husband booked a hotel room in Chicago and arranged for someone to watch their daughter for a few days. Cyndi spent the majority of her time in Chicago crying. “You don’t know whether your child is going to do well,” she said, or “if you’re going to put him through all this medical stuff, and then they do pass away anyway, and you’ve put them through all that pain.” Cyndi clutched a copy of her son’s footprints and headed home. Just one week passed between the initial diagnosis and the termination.
Cyndi said she made the best decision for her family that she could, given the circumstances. Yet she was still reeling from the experience when I met her. “I was just in a fog for a month,” she said, shaking her head. “Everything has to happen so fast. … I really would have liked four more weeks to explore options. … But once you get past that 24-week mark, if you choose to end the pregnancy you’re looking at flying to Colorado.”
Combined with the rapid erosion of reproductive rights at the state level, the rise of the 20-week abortion ban has meant that a handful of clinics in states that do allow later procedures receive a constant stream of women from out of state. The Women’s Med Center in Dayton, Ohio, where Dr. Roslyn Kade practices, is one of them; Boulder Abortion Clinic, headed by Dr. Warren Hern in Colorado, is another.
Kade’s clinic offers abortions up to approximately 22 weeks in the case of fetal anomalies. The women she sees have often traveled for hours to reach her, yet before they can start the two-day procedure, they have to contend with Ohio’s own regulations: state-scripted counseling and a waiting period of 24 hours. “I can assure you, that does not change people’s mind,” Kade told me. “By the time they walk in our door, they have…thought long and hard about the decisions that sit in front of them.”
Learning of an anomaly is already life altering, Kade says; abortion restrictions just serve to make the experience more daunting. “It feels like an emergency to them,” she said, but the restrictions make time crawl. A patient who arrives at her clinic on a Friday, for instance, often has to wait until the clinic is open again on Tuesday of the following week to start the procedure. “The time from when they find out until they seek resources and seek care, it’s really a horrible, horrible experience for them. The state makes such an effort to condemn them. And they feel that.”
Women who wait a few extra weeks — whether to complete additional tests or to make travel arrangements — often find themselves at the Boulder Abortion Clinic. Hern’s clinic is one of only three in the country that perform abortions after 26 weeks. (The others are in Maryland and New Mexico.) There used to be another, in Wichita, Kansas, until that provider, Dr. George Tiller, was assassinated in 2009. Hern said he wakes up every day expecting to be shot.
Hern is tall, with a head of silver hair. He’s been performing abortions for 45 years and says he sees a great many women from the states that have imposed 20-week bans. He estimated that of the several hundred patients he sees a year, more than half come from out of state and because of severe fetal anomalies. Most women fly into Denver and make the one-hour drive to Boulder, a route that offers sweeping views of the Rocky Mountains. The clinic is a nondescript, beige brick building with a bulletproof entryway — an unsuspecting refuge for women denied care in their home states. A sign warns that cell phones, cameras, and computers are not allowed in order to protect patient privacy.
“No reasonable person would do this,” Hern said to me. “What does that tell you about me?” He’s committed to a simple idea: “that women can be complete human beings, that they’re more than objects for pleasure and having babies.” The women who come to him, he said, have often “spent many days and weeks trying to find someone who will help them.” Some health care providers actively withhold information, he says; others are unaware that services like his are available “and tell patients they have no option.”
A third-trimester abortion — any abortion after the end of the 27th week — is a four-day outpatient procedure, beginning with the administration of medication that brings the fetus’ heart to a slow stop. The first day, women are taken to a warm room where East Asian art adorns the walls, cushions rest on wicker chairs, and tissues are readily available. There, counselors make sure each woman is ready to take the first step. “How does it feel now that you’re in the clinic — now that it’s real?” a counselor will ask. Some of the women say they feel relieved, others are mainly scared or anxious.
The day I visited the clinic, a 32-year-old woman named Michelle had just received an injection of digoxin, the first step in terminating her 29-week pregnancy. She and her husband Josh, 32 (not their real names), traveled from Ohio, where they both work as therapists. The young couple never envisioned themselves in Boulder under these conditions. But like most of the people who visit Hern’s clinic, they felt they lacked any other options.
The couple found out at their 18-week ultrasound that their fetus had enlarged brain ventricles, which put him at increased risk for numerous medical complications. At 20 weeks, a specialist diagnosed other brain abnormalities: The fetus didn’t appear to have anatomical features critical to proper brain function. At first, they thought their baby would have a disability, and they prepared themselves for that reality. At 23 and then at 27 weeks, Michelle and Josh sought additional screenings, which confirmed what they feared: If he survived, their child would have seizures and require a feeding tube. He would also be taken away immediately after being born for brain surgery. “We knew the baby wouldn’t have likelihood to feel emotion or have any higher thinking,” Michelle said. “Living in spite of a disability and having zero quality of life are very different,” Josh added.
They talked about what their son’s soul would experience. “It facilitated the conversation about what life is,” Michelle said. They asked themselves, “Is it more than just breathing and eating?” The couple said their parents helped them think about their lives as well as their unborn son’s. In the end, they decided to terminate.
By the time they made the decision, Hern’s clinic was the only plausible option. They had to take two weeks off work and rely on family to make the trip a reality. Their siblings chipped in for the costs of a rental car, gas, food, and a hotel; their parents paid for the procedure. It was “hard carrying a child that I knew was going to die,” Michelle said. “It made it hard for me to get up in the morning, to go to work.”
In a private office at Hern’s clinic, the couple came to terms with this stage of the process. “It was hard going into it,” Michelle said. Josh handed her a tissue and squeezed her hand. “I’ve been attached to him since the beginning.” She has learned, she said, to honor contradictory emotions — grief-filled sadness and, hopefully, eventually, peace. In a situation like this, they know now, there are no easy choices.
After learning of Annesly’s fatal diagnosis, Lynae took a few days to process the news. She began to think of ways to induce labor on her own — throwing herself down the stairs, or getting into a car accident. “A lot of terrible things go through your head,” she said, her eyes welling. “I just wanted it to be over. I didn’t want to have to wait for her to die. I didn’t want her to die inside of me.”
A week later, an excess of amniotic fluid forced Lynae into labor at 32 weeks. Her doctor performed an emergency C-section to give Annesly the best chance of survival. Annesly was born with a heartbeat, but despite intense efforts by the delivery team, Lynae said, “she never stirred, she never took a breath.” The couple chose “comfort care” — no ventilator.
Lynae held Annesly and said good-bye. Afterward, Avery climbed up on the hospital bed, where her mom explained why the sister who had been growing inside Mommy’s tummy wasn’t coming home. “We wanted her to do more than just survive,” said Lynae. “I wanted her to live.”
In debates between “pro-choice” and “pro-life,” Lynae said, people often talk about a baby’s heartbeat as a sign of life. But Lynae has come to think of things differently. “A baby’s heartbeat doesn’t mean there’s life. … It is a sign of life, but to live, you need to be able to breathe. You need to be able to have a neurological function.”
Lynae’s first foray out of the house after Annesly’s death was to get a pedicure — a futile attempt to relax. It was the middle of the day, and Lynae explained to the technician that she was home from work because of a surgery. When the technician asked what kind, Lynae felt trapped, and said that she had gotten a C-section. Immediately, the tech congratulated her. Lynae wanted to bolt, but she was captive in the chair for the next half hour, lying — “Oh, thank you, she’s doing well” — to avoid spilling out her grief.
This would become a recurring theme. At work, her boss tried to tell people for her so she wouldn’t have to repeat the story. Still, other coworkers rushed up to her and asked for photos. “You don’t know how to handle those questions,” she said. “No one has taught you.”
Some women who experience a miscarriage, a stillbirth, or the loss of a newborn call a subsequent healthy infant a “rainbow baby.” Lynae got pregnant with hers, a boy, nine months after Annesly died. “The first time I got a positive on a pregnancy test, I sobbed,” she said. “Not out of happiness, but out of fear.” She and Paul are both working parents; they worried about the implications of caring for a severely disabled child. “I wouldn’t want to go through that again,” Lynae said. “To not have an option, but to live day-to-day waiting for your child to die.”
The 20-week abortion ban may not stand up to legal scrutiny in coming years. With Roe, the Supreme Court declared it unconstitutional to ban abortions before viability, typically 24 to 26 weeks. Similar bans — in Arizonaand Idaho — were struck down by federal courts in 2013 and 2015, respectively. And in Georgia, the American Civil Liberties Union is currently appealing a ruling upholding the law. But new states are pushing the bans: Bills are under consideration in Pennsylvania, Michigan, and Ohio. If passed, this would extend 20-week abortion bans to a total of 19 states.
When I visited Lynae, now 38, a swing set with swings for two stood in the backyard. A toy lawn mower, race car, dinosaur, and truck were scattered across the grass — signs of their two-year-old son Rowan, their rainbow baby. Paul lay sprawled on the cream-colored rug; Rowan was jumping from the couch into his arms. Lynae watched, smiling.
In some ways, Lynae was one of the slightly more fortunate ones: She never had to travel to get an abortion or carry an unviable pregnancy to term. But no woman in this position is lucky; none are protected from the emotional assault that these 20-week bans inflict. “Our grief will change as we get older,” Lynae said to me when we first spoke, “but it will never go away.”
This article was reported in partnership with The Investigative Fund at The Nation Institute, where Sylvia A. Harvey is a reporting fellow.
*A note about terminology: The vocabulary we use to describe the unborn is inevitably charged. Wherever possible, we have attempted to follow the lead of the subjects and have used the terms that they themselves used to describe their fetuses or unborn children.