Almost all the people we interviewed for this book told us they believed they’d done something to cause the unwanted end of their wanted pregnancies. Even Colleen felt like she wasn’t welcoming enough when she found out she was pregnant, and that contributed to her loss.
“No matter how educated somebody is, no matter how many kids they’ve successfully been able to give birth to or the losses they’ve had, everybody is looking for the thing that they did,” Dr. Katharine White told us. White is an associate professor of obstetrics and gynecology at the Boston University School of Medicine, runs a clinic for people suffering miscarriage, and is also the author of Your Guide to Miscarriage and Pregnancy Loss: Hope and Healing When You’re No Longer Expecting.1
“If they had only got care sooner. If only my doctor had taken my bleeding seriously,” she went on. “‘If only’ gets a hold and won’t let go. It is absolutely okay to grieve all of this, but like, let me at least take that burden off your shoulders. It doesn’t matter what they would have done as soon as you started bleeding. It’s just not your fault. I do a lot of this in my miscarriage clinic. Half of what I talk about are all the things that did not cause this loss. And how it is not your fault. It’s very Good Will Hunting.”
Some women have one miscarriage. Some have five or ten. People of color are at a higher risk for miscarriage than white women.2 And the pain varies widely, both physically and emotionally. Some experience bleeding and cramping they’d call a nuisance. Others are doubled over in pain for days. For some, it’s heartbreaking. For others, it’s a momentary sadness or even a relief. It’s all very personal. The one thing miscarriages have in common is how common they are and how that fact makes exactly zero people feel better when it happens to them.
Margaret M. was in her late thirties when she decided she wanted to have children. She had spent much of her early thirties in the pursuit of advanced degrees. Like many of the people we spoke to, she assumed because she wanted to get pregnant, she could, and she started to get impatient when it didn’t happen right away. When she had a miscarriage at roughly six or seven weeks, it deeply troubled her. “It was not a happy time,” she told us. “I guess I didn’t appreciate how common it was. I didn’t realize that. Not that I would have taken it in stride.”3
Northern New Jersey–based Pamela Caine, who lost her infant son at thirteen days old in 1996, is the cofounder and executive director of Griffin Cares Foundation, which helps parents who have experienced pregnancy and infant loss. “Because of the trauma that the loss parent is experiencing, these memories are just locked in,” she told us. “Healthcare providers are the leads in a video that’s going to replay in this person’s memory forever. What they say or do makes a big difference. They can use that moment to set someone on a path to healing by sharing options to give the parents some agency in a really out-of-control situation, or they can be the star of a traumatic memory.”4
South Bend, Indiana–based Krysta H. told us that she’d suffered two miscarriages. One she weathered at home, doubled over in pain and bleeding so much she worried she was hemorrhaging. The second time she became pregnant, she made it to ten weeks, and then there was no heartbeat during an ultrasound. This time, she opted for a D&C procedure. It was easier for her physically but not emotionally. “It was the picture of the tiny little fetus lying motionless at the bottom of my uterus,” she told us.5 That was it on pregnancy for her; they decided instead to adopt. She couldn’t handle any more feelings of failure and grief.
A D&C procedure is used for an abortion and miscarriage. We’ve talked about this already, but these procedures are the same. Every doctor we’ve talked to wants to make sure that you, dear readers, understand this. Because in the world we’re inhabiting now, it’s becoming more and more important as abortion restrictions limit what procedures can and can’t be done.
“The issue, I think, and why confusion is the norm is that the procedures and medications that we use to treat pregnancy loss or miscarriage or fetal loss that someone did not choose are the same as treatments and medications that we use to treat and provide abortion care—which in this case means a pregnancy that ends because someone makes a decision to end it,” said Dr. Lisa Harris, an ob-gyn who treats patients, runs a miscarriage clinic, and has been advocating for more than a decade for doctors to speak more publicly about miscarriage and abortion.6
Miscarriage treatment is now becoming ever more fraught as the United States moves to further restrict medical access under the umbrella of antiabortion laws. In many cases, people miscarry with no medical intervention, which was how it was done before we had the science to help it along. (But women also used to die a whole lot more.) One of the ways they got terminally sick was through an infection from unpassed tissue, which is why doctors started regularly performing D&Cs. Today, doctors are looking for signs of distress to intervene if necessary. Generally, when patients opt for a D&C, they report less pain, considerably less bleeding, and an overall less troublesome experience than when they miscarry at home, doctors told us.
Doctors have a lot of training in D&Cs, because they are a frequent and common gynecological procedure also used for fibroids, polyps, and postmenopausal bleeding. Where it gets trickier, procedurally and otherwise, is with D&Es, and some hospitals and doctors colloquially refer to a procedure after just fourteen weeks as a D&E because everything gets more complicated as the fetus grows, there’s more tissue, and there is a higher risk of uterine perforation and hemorrhage. In a D&E, a person’s cervix is dilated and then the fetal remains are removed with instruments, sometimes in pieces. The other option is labor and delivery, often among the other people in the maternity ward who are about to have a healthy baby. Labor, even induction, can take hours. Delivering is hard and painful. And then you must face the reality that your baby has died. (Of course, you must face that reality with a D&E too, but the patient is knocked out for the procedure itself.)
Many hospitals refer out to abortion clinics for D&Es, as happened with Colleen, because you want the doctor who has the most experience and does ten procedures a day, not occasionally. For that same reason, this training is endangered by restrictive laws because they’re not folded into everyday care.7
This is part of the unforeseen damage from the effort by 1970s feminists to make abortions more widely available. They were working to make quality care accessible, particularly as some hospital doctors refused to perform abortions in the days following the 1973 legalization. The idea was for clinics to provide the whole menu of care, from routine exams to abortions and prenatal care. But the result was that the procedure was siloed, performed mostly in clinics, and not routinely considered hospital or outpatient ob-gyn care. We call them “abortion providers,” but we call our ob-gyns “doctors” or “midwives.” Over the past fifty years, doctors too split into those who perform the procedures and those who do not. There is little discussion of abortion and miscarriage as part of the same spectrum, even though medically, the procedures can be identical.
The Accreditation Council for Graduate Medical Education formally reaffirmed in 2022 that ob-gyn residency programs have to make abortion training available, leaving programs in certain states in a precarious spot. “If they continue to provide abortion training in states where the procedure is now outlawed, they could be prosecuted. If they don’t offer it, they risk losing their accreditation, which in turn would render their residents ineligible to receive specialty board certification and imperil recruitment of faculty and medical students.”8 Teachers fear that arranging for out-of-state training could make them vulnerable to prosecution for aiding and abetting abortion in some states.
In states where abortion is highly restricted, doctors must weigh whether they may be criminally liable for performing a D&C if they didn’t first diagnose the miscarriage, because perhaps the pregnant person had ended the pregnancy at home and then went to the hospital. In states with strict rules, if there’s any cardiac activity at all, doctors are more hesitant to perform the procedure. The result is delayed care, which can be emotionally damaging at best, life-threatening at worst.
In Texas for example, one woman named Amanda told the New York Times that she went in for a routine D&C after a miscarriage, and the next year when she suffered another miscarriage, the same hospital denied her the procedure and sent her home with instructions to return only if she bled so much that she filled a menstrual pad more than once an hour.9 What changed? She doesn’t know for sure, they didn’t give a reason, but a new, highly restrictive abortion law had gone into effect in Texas that barred almost all abortions after six weeks into pregnancy.
Though it can make people sick and uncomfortable, most women today don’t die if they’re forced to miscarry at home. But an ectopic pregnancy can be deadly if it’s not treated, and instructions to just go home and wait till it gets worse start to become a game of Russian roulette.
An ectopic pregnancy is when a fertilized egg implants in the fallopian tube, which happens in roughly 2 percent of pregnancies. There may be a detectable heartbeat at first, but since there’s no room to grow inside a fallopian tube, the embryo doesn’t develop. If the tube ruptures, it can be fatal.
Grand Rapids–based Allison M. didn’t know she was pregnant when she began bleeding and had severe pain in her side. “I thought it was just a bad period, so I lay down with a heating pad, and it didn’t subside,” she told us. Urgent care confirmed she was pregnant but sent her straight to the ER. “They said, this is life-threatening. You need to go right now.”10
She passed out while they were taking her blood pressure in the ER, and an ultrasound confirmed internal bleeding and the ectopic. “They told me they need to do surgery right away, and I might have to have a full hysterectomy and a blood transfusion,” she said. “I went under not knowing if I would wake up and never be able to have kids.”
She ultimately lost one fallopian tube. “I was pregnant, and it was gone, all in one day,” she said. She eventually went on to have two living children.
When trigger laws went into effect after Dobbs, these little-known complications were in the spotlight as lawmakers worked through how or when to allow for exceptions. (Some exceptions are for rape, incest, or to save the life of the mother. On paper, it’s simple; in reality, it’s quite complicated. How do you prove you’ve been raped, let alone under extreme time constraints? How do you decide the mother is sick enough to save her life?)
In 2019, then Ohio State Representative John Becker, a Republican, sought to limit insurance coverage for abortion procedures but would offer funding for “a procedure for an ectopic pregnancy that is intended to reimplant the fertilized ovum into the pregnant woman’s uterus.” That medical procedure doesn’t exist. Becker told the Cincinnati Enquirer that he never actually researched whether it was legitimate medicine, and he had gotten some help from the local Right to Life Action Coalition lobbyist.11
After some public outcry over the measure, Becker wrote an op-ed in the newspaper where he said that he spoke with medical doctors from the American College of Obstetricians and Gynecologists who, yes, told him that it was not a viable medical procedure and reiterated it was dangerous and could be deadly for the mother. But he instead decided to rely on journal reports from 1980 and 1917 that offered a slightly different take. (Yes, you read that right, 1917. Penicillin wasn’t discovered until 1928.)
The measure failed. But Missouri passed an abortion ban in 2019 that became law in 2022, and medical professionals who perform or induce abortion can be charged with a felony punishable by prison time. (So who’s laughing now, we guess.)
In 2016, Tampa Bay, Florida–based Saya H. was thirty-four when she was diagnosed with an ectopic pregnancy. She was devastated and spent the weekend “unimagining my new life and waiting for my miscarriage.” First, she had to have an ultrasound “of every corner of my insides to listen for the heartbeat of the thing I couldn’t save.”12
“I remember feeling embarrassed to ask if there was anything I could do to save my baby, even if it was, like, major surgery. They said no, and it’s extremely dangerous for you not to take care of this. They never used the word abortion, but it was always in my mind.”
It was caught early, so they treated her with a methotrexate injection, which is 90 percent effective in ending the pregnancy but meant she couldn’t get pregnant again for three months because it is a chemotherapy drug too. To be clear, the procedure often used to treat ectopic pregnancy is not the D&C or D&E that are most associated with abortion. Yet it’s still mired in the political chaos, because the way the punitive laws are written can delay or deny care.13
The shot ultimately failed, and Saya had laparoscopic surgery eight days later to remove the embryo from her fallopian tube.
There’s also something called a molar pregnancy, which occurs when fluid-filled sacs or tumors develop inside the uterus instead of a placenta. There are both full and partial molars, and during a partial, there may be initial development of a fetus, but it cannot survive. The treatment is—you guessed it—a D&C. These occur in less than 1 percent of pregnancies in the United States and are very rarely discussed.14 They require monitoring HCG levels for some time as well as oral chemo pills like methotrexate. If a molar pregnancy turns cancerous, it can be fatal.
“I wish I would have known that I could have had one. I truly wish that I had been even remotely educated about it,” said Traverse City, Michigan–based Allison B., who had a partial molar pregnancy and a miscarriage between her two living children.15
Many people aren’t even aware that there are this many types of pregnancy loss. The category that falls in the latest gestational term is stillbirth, which in the United States is generally defined as the loss of a baby after twenty weeks. Practically speaking, stillbirth is generally hard on the body—most people labor and deliver the baby. Childbirth is far more dangerous than abortion or miscarriage, and childbirth with no living child at the end is particularly grueling.
South Florida–based Nathalie C., who lost her daughter Toni at twenty weeks after she went into premature labor because of fibroids and preeclampsia, told us, “We need to educate women and tell them this can happen. I know they don’t want to scare anyone, but they don’t tell you what will happen if you lose a baby, that you may deliver, that you may have to have a D&C. No one wants to talk about it. Nobody wants to confront such a thought that a little baby can die. There’s a lot of fear and judgment about it. But there has to be a way for women to know this is a possibility before it happens and they have absolutely no information.”16
The way stillbirth is treated in the United States, you’d think it never happened. But at least twenty-one thousand babies were stillborn in 2020, which translates to about 1 in 175 deliveries in the United States.17 Black women suffer stillbirth at 10.3 per 1,000 live births, Native American women 7.2 per 1,000 births, Hispanic women 5, white women 4.8, and Asian or Pacific Islanders 4.2.18 The CDC says the rates are likely higher in practice because of a lack of uniformity in how they are reported. And the number of deaths rose during the COVID-19 pandemic.
The annual number of stillbirths in the United States far exceeds the number of deaths among children ages zero to fourteen years from preterm birth, sudden infant death syndrome (SIDS), accidents, drownings, fire, and flu combined, according to the March of Dimes.19
But there is no good data collection on stillbirth and its causes. (Picking up on a theme?) Stillbirths aren’t counted in the infant mortality tally kept by the CDC. Death certificates are the only real source of national data on this, but the definition of stillbirth varies so widely from state to state that it’s not clear all stillbirths are even getting recorded. Not every stillbirth gets a death certificate, and if you go to a clinic, it isn’t counted in the state’s vital statistics. In many states, stillbirth is listed as the cause of death, but stillbirth isn’t a cause of death—it’s a descriptor that a baby was born dead. The baby could have died because of issues with the umbilical cord or the placenta or during a difficult delivery. This lack of information makes the data impossible to analyze.
We get it. It’s awful to hear about all this. There’s wild superstition around pregnancy, and even just thinking your baby might be in trouble sends people into a doom spiral. (After her twins died, Rebecca considered wearing a T-shirt that said “Dead Babies Aren’t Contagious” when every parent at kindergarten pickup abruptly stopped speaking to her.) But there is also a not-so-subtle paternalism in some corners of medicine where doctors don’t want to make women anxious by telling them something potentially disturbing. If knowledge is power, maybe if we learned and talked more about this, we could prevent some of it from happening?
In 2019, Erica Bailey had an easy pregnancy—for a while.
“In hindsight, my son’s movements were slowing down in those last weeks,” she said. But she chalked it up to the much-perpetuated idea that “babies run out of room in the third trimester.” (The movements should change rather than slow.) “But I literally had never heard anyone talk about stillbirth. It never crossed my mind.”20
She was thirty-nine weeks when she became concerned that she hadn’t felt movement, and she and her mom went to triage, where a fetal doppler and an ultrasound showed her son Rhoan had died in utero.
“My life split in half in that moment. I felt like such a failure. My job was to protect this baby, and I couldn’t even do that,” Bailey said.
She became a Count the Kicks ambassador, a group advocating to have expectant parents track fetal movement throughout pregnancy. She counted kicks religiously with her second son, and at thirty-six weeks, she noticed decreased movement. A nonstress test showed his heart rate was decelerating. She was induced that day, and he was born healthy. “The stillbirth rate has been unchanged for decades, and I can’t handle that. I hate that it falls on the backs of loss parents to change this, but no one else is going to,” Bailey said.
Consider this: SIDS, where a newborn dies seemingly without warning before their first birthday, is similarly mysterious. In the 1990s, the National Institutes of Health kicked off a major awareness push that revolved around something so simple: putting babies to sleep on their backs instead of their stomachs. Over the past thirty years, SIDS deaths have declined by more than 70 percent. Now, there are roughly thirty-four hundred cases annually of sudden unexplained infant deaths, including fourteen hundred SIDS deaths.21
Think about how much you hear about SIDS and how little you hear about stillbirth. But there’s a simple awareness solution to help reduce stillbirth too, according to the American College of Obstetricians and Gynecologists. After your baby starts to kick, you can keep track of how often you feel that movement. It requires some focus, and the key is to notice major changes, but it’s simple and easy to communicate, and there are easy-to-use apps.
Marny Smith, who delivered a stillborn son, Heath, at thirty-six weeks, is a founding member of PUSH for Empowered Pregnancy, an all-volunteer stillborn prevention nonprofit. At the time of her loss, she had never heard of kick counts. Had she known, she would have gone to the hospital immediately when she noticed reduced fetal movement. But—and she’s not wrong—she thinks many pregnant people don’t want to be seen as “hysterical” (thanks, ancient Greeks) and act panicky and worried. Why though? Who are we trying to impress?
“Doctors don’t bring up stillbirth because they don’t want to make their patients anxious. Well, would you not tell them they had cancer to avoid making them anxious?” Smith asked us. “It’s ludicrous to say you can’t educate women about counting kicks to avoid scaring them. What you’re saying is you don’t want to educate them, don’t want to empower women to make decisions about what’s going on in their body, the information they’re receiving from their baby. I believe that withholding information from pregnant women is putting them and their babies in danger.”22
The Rainbow Clinic in Mount Sinai Hospital in Manhattan is the first of its kind in the United States designed solely to provide specialized care for the subsequent pregnancies of those who have experienced stillbirth. (It takes its name from the colloquial term “rainbow baby,” used to describe a successful pregnancy after a loss.) It opened in 2022, created in partnership with Smith’s nonprofit, PUSH. A second clinic opened in Los Angeles in 2023.
Dr. Joanne Stone, a maternal-fetal medicine specialist, heads the clinic, which offers genetic counseling, nutrition counseling, social workers, genetic testing, and frequent ultrasounds and fetal monitoring.23 Patients can schedule appointments as often as they want, and fetal movement is tracked both by the doctors and the patient more frequently. (Colleen really wishes this existed when she was struggling through two other pregnancies.) They offer preconception consultations for those who want genetic counseling before getting pregnant again, which is available to anyone, even if they are outside Manhattan.
Every staff member is trained with a six-hour video session to make sure that everyone—front desk, sonographers, medical assistants, nurses, and doctors—is treating these patients with language and care they need in what is usually a very high-stress, very emotional pregnancy. NICU staff and pediatricians as well as the nurse managers on labor and delivery and postpartum floors also receive the training, and the room is marked by little rainbow footprints so everyone knows not to say things like “Is this your first baby?”
Each patient gets personalized medical management, and all have Dr. Stone’s email address. “They all know, no matter what, you just reach out to me,” she said. One patient wasn’t feeling fetal movement at thirty weeks, so Dr. Stone kept that patient on the labor floor until she delivered at thirty-seven weeks because even though the monitoring was normal, the patient couldn’t feel the baby move. “I do whatever I have to to keep them safe and to feel cared for,” Stone said. “They know I don’t care if they want to come in every day for monitoring if it makes them feel comfortable.”
The clinic receives outside funding to allow this level of care. Unsurprisingly, no one’s insurance is covering unlimited sonograms.
“The guidelines are to deliver after thirty-nine weeks, but there’s not a single patient in my clinic who is going to make it to thirty-nine weeks,” she said. “High anxiety is an indication to deliver earlier, and most go around thirty-seven weeks.”
Social workers follow up the day after the delivery, within a week, and after two weeks to see how the parents are doing, and there are frequent postpartum depression screenings.
“Some people are high risk, and you can’t take that risk away,” Dr. Stone said. “Black women are high risk, and you can’t fix structural racism, but you can make sure that they’re being heard, that you’re addressing all their anxieties and getting frequent monitoring,”
Women who have experienced stillbirth are almost five times as likely to experience another stillbirth or severe maternal complications, and up to a quarter are preventable, according to the Rainbow Clinic.24 They want to standardize data collection procedures and share data to try to make a dent in the stillbirth rate. The model is based on the Rainbow Clinic in the UK, which published data that showed their patients only had a 1 percent recurrent stillbirth rate. “That is incredible,” Stone said. “It’s going to take time to get our numbers like that, but if we can get that data, we can show this model of care is applicable in other settings.”
Colleen asked to do testing on the baby’s remains after the D&E procedure so that she could get to the bottom of what happened and hopefully prevent it in the future. They could find no reasons.
Autopsies aren’t routinely encouraged. They aren’t guaranteed in hospitals even if they are requested; Smith says she paid $1,000 out of pocket in New York, a figure that could easily deter even upper-middle-class parents from seeking one out.
Rebecca was discouraged from sending her stillborn son for autopsy, because it would delay burial and likely would not reveal answers. After learning about stillbirth expert Dr. Harvey Kliman from those we interviewed, she sent her 2014 placenta pathology from that pregnancy to him. The results showed that her twenty-week stillborn died as the result of a genetic abnormality. The prenatal genetic screenings had all come back normal, so it never occurred to her that it was a genetic issue. But those tests screen for a limited number of chromosomal abnormalities—the ones usually caused by a wonky egg—and there are nearly limitless possible genetic misfires, though rarer.25 Nine years and $400 later, she had an answer. She texted Colleen, “I don’t know how I feel. Not worse? So…score.”
Though she was past the point of blaming herself, it did still help a little to have confirmation that there was absolutely nothing she could have done, and her living sons were unlikely to pass along anything that would affect their eventual children. Those answers had been sitting on slides from the pathology lab for almost a decade, and she would never have known if not for this book.
The American College of Obstetricians and Gynecologists published an obstetrics care consensus report jointly with the Society for Maternal-Fetal Medicine in 2020 that detailed how a lack of uniform protocol for evaluation and classification of stillbirths—and decreasing autopsy rates—are hampering study.26
“A significant portion of stillbirths remains unexplained even after a thorough evaluation,” they wrote. They suggested that evaluation of a stillbirth should include a fetal autopsy, thorough examinations of the placenta and umbilical cord, and a genetic evaluation. They also recommend referring someone to a grief support group and watching out for signs of depression. Signs of depression. This would be, how do you say? A major understatement. The people we interviewed registered stillbirth as a profound loss.
“He was perfect. Just perfect,” Portland, Oregon–based Crystal H. told us about her baby Ezra, who was a full-term, seven-pound fourteen-ounce baby. She has an answer, but it doesn’t make her feel any better: There was a knot in the umbilical cord that choked off nutrients. He died the day before she was set to be induced to deliver him, at forty weeks and four days.27
“It has shattered our lives,” she said. Crystal talks about him all the time. She has to talk about him to survive. This makes a lot of people uncomfortable, because they don’t know what to say or how to handle her grief.
There’s a difference between the biological experience of a stillbirth and an early miscarriage. “It feels very different,” said Joanne Cacciatore, founder of the MISS Foundation, an international nonprofit that serves families whose children have died; she’s also a professor at Arizona State University who researches grief and the loss of a child. “For example, I work with a woman—her child died, and then she had three or four subsequent miscarriages early, in the first trimester. They were intensely painful for her, not just because she had miscarriages but because she was losing over and over and over again.”28
Nneka Hall’s daughter Annaya was stillborn at thirty-nine weeks after undiagnosed preeclampsia caused the placenta to fail. She worried something was wrong but was told her worry was because of her history of depression. It was her third pregnancy, she knew something was off, but she felt like everyone was blowing her off. “They literally gaslit me to believe it was all in my head, and then weeks later, she died, and they said, ‘These things happen.’”29
She got little counsel on what to do; she felt confused and upset and exhausted.
“They brought her to me, and no one told me what I could do. I never even saw her hands or her hair until the pictures because I was afraid to unswaddle her,” said Hall, now a doula. “We’re afraid of death. Now I know you have to show parents that they’re just babies. She just looked like a sleeping baby.”
They were waiting for an imam to come give a blessing and discovered the nurses had kept the baby in a storage room, not in the morgue. She said the nurses forgot about the baby girl because she couldn’t cry. Because of this, the baby was no longer in a condition for Hall’s older children to meet her.
Awful, right? But Hall isn’t the only person we interviewed who reported that their baby was temporarily misplaced at the hospital! Part of the problem is that hospital staff don’t get bereavement training very often, especially in smaller hospitals. But we also lack a social understanding for this kind of loss; we sweep it under the rug and forget babies in storage rooms and then tell the parents to get over it and try again for another.
So many people mentioned that it was a travesty that they didn’t know miscarriage and stillbirth were not uncommon and could happen to them. It’s unsurprising. In What to Expect When You’re Expecting and Great Expectations, two popular prenatal books, any negative reproductive outcome is segregated into its own section in the back. Loss is an appendix, not part of the main story.
Some of those we spoke to believe pregnancy loss should be integrated into school health classes, gynecological exams, prenatal education, and childbirth classes. “When all sex ed focuses on is that you shouldn’t get pregnant, here’s how to prevent it, it sends the message that when you want to be pregnant, it’s easy and it all goes well,” said Crystal Clancy, a perinatal mental health specialist based in the Twin Cities area through her practice Iris Mental Health and Wellness. “The trick here would be to do it in an age-appropriate way so that teens don’t hear, ‘oh, well then, it isn’t that easy to get pregnant.’”30
Clancy also said pregnancy loss and the statistics should be mentioned at every exam—even if it’s long before the patient is even thinking about pregnancy and not just for those who identify as female. “Even if they’re not in a place to hear it yet, it’s still information. It has to be normalized as part of routine healthcare, to have it be as commonplace as being asked how regular our periods are.”
Lacey M., who lives in central Washington, was pregnant six times in six years. She has had two living children as well as miscarriages and a TFMR. “I did so much research after my own losses, and I was shocked at how little I knew but also that nobody else knew,” Lacey said. “I’m like, ‘how could you not know any of this?’ But why would they? We don’t teach anything. I had an abstinence-only education. So of course most people don’t know anything. They’re not taught anything about sex or reproduction, let alone loss.”31
Addressing the possibility beforehand also puts pregnant people in a better position to know what’s normal and what isn’t. Bleeding, for instance, doesn’t necessarily mean a miscarriage; how much bleeding matters. Or patients could be supplied with a pregnancy loss kit of a specimen collector and pads, just in case. Or they could be given a better sense of what’s a normal amount of bleeding and cramping with a miscarriage and what warrants a trip to the ER.
“We fail our patients when they don’t know what it means to miscarry, that they could deliver their baby at home,” said Sue Villa, the perinatal bereavement coordinator for Edward-Elmhurst Health in Chicago’s west suburbs. “We need to be better at preparing our patients for what can happen. What do you do when you pass the tissue? Do you flush the toilet? That can be so traumatic.”32
This lack of education and accurate information adds to fear and worry, and it sets the stage for PTSD, therapists told us.
Some parents end a wanted pregnancy for a variety of reasons, among them because their babies can’t survive outside the womb or would have a truncated life marked by suffering and pain; because they feel unequipped emotionally, physically, or financially to handle a diagnosis; because the birthing parent’s health means they cannot continue a pregnancy. If we barely talk about stillbirth, TFMR is even less discussed. We are now capable of learning a raft of details about the baby we carry thanks to more specific and better testing that can be done with a simple blood test. Unfortunately, that greater access to diagnoses does not necessarily mean there are treatments, and it’s on the parents to decide what to do with that information.
Kate Carson, an administrator at the Ending a Wanted Pregnancy Facebook group, didn’t discover until her thirty-fifth week of pregnancy (forty weeks is full gestation) that her baby had brain abnormalities. “The more pregnant I got, the more I was observing symptoms that didn’t seem right. The way she moved was wrong. She moved all the time. I would tell my team, something is wrong, she never stops moving. They would say, that’s great! Because they were looking for fetal demise. But they weren’t hearing what I was saying. She didn’t sleep. She didn’t rest. She shook all the time.”33
She was so anxious that her midwife ordered an ultrasound, and that was when they discovered severe brain abnormalities that gave her daughter a very slim shot of making it to age one, with age three being almost impossible.
Carson says she was given the option of giving her baby only one of two precious gifts: peace or life. She chose peace.
“Sometimes you are just not willing to take a risk on something as important as your child’s well-being, and sometimes you have to choose an outcome that you hate to mitigate that risk.”
There are only a few doctors who can or will do this, fewer still after the Dobbs decision limited the states where abortion is available after twenty-four weeks. Carson went to one of them, Colorado-based Dr. Warren Hern. She had to come up with $25,000 up front as well as money for travel and a hotel.
The first day, the baby was given a euthanizing injection. Then it took two full days to open the cervix, after which Carson delivered. Dr. Hern brought her the baby himself, wrapped in a blanket. She had the baby’s cremains sent to her home. Less than twenty-four hours after delivery, she was on a plane back to Boston.
Margot Finn of Ending a Wanted Pregnancy traveled to Dr. Hern in Colorado too after her daughter was diagnosed with a grave case of lissencephaly—a life expected to last two to six years, marked by respiratory infections, painful seizures, and frequent surgeries.34
By the time Finn had enough information about her child’s diagnosis, she was past the legal twenty-four-week limit for abortion in Michigan. At twenty-three weeks, six days, all she knew was that her baby had a 70 percent chance of mild to moderate cognitive impairment and only a 30 percent chance of more severe problems. At that time, she wanted more information. Maybe her baby could have a life that wasn’t full of pain.
“Waiting for a definitive diagnosis was a privilege I only had because I could pay to travel halfway across the country on short notice and front the $12,500 for an out-of-network abortion,” she wrote in an op-ed for Slate.35 “The only thing I could imagine that would have been worse than my daughter dying is my daughter living,” Finn wrote. She continued, “The only thing worse would have been to feel personally responsible for every bit of her suffering thereafter, wishing I could give her peace and being unable to do it.”36
None of these people wanted any of this to happen. They had to make a terrible choice, and they were doing what they believed was the best and most caring thing for their babies. That’s what being a parent is.
Other pregnant people make different choices, equally grueling. A Minneapolis-based loss parent who asked to be called Hooyo, the Somali word for mother, was sixteen weeks pregnant with her first child when she found out her baby didn’t have kidneys and would not survive outside the womb.37
“As a Muslim, I didn’t want to be the one to end life, and I continued to carry him to let what happens happen. I decided to carry the pregnancy through, and whatever weeks we have with him, we’ll make meaningful,” she told us. “It obviously changed the whole pregnancy. We were never planning to bring home a baby. We were planning a funeral. We didn’t buy anything, we didn’t set up a room—all those things you think about when you first find out you are pregnant.”
She and her husband went on vacation and tried to make memories while she was still pregnant.
At thirty-two weeks, she gave birth, on March 11, 2020—the day before the World Health Organization declared COVID-19 a global pandemic. March 12, the hospitals were shut down, and she would have had to do it all alone.
“One of the biggest things that I hold on to, I can’t imagine giving birth alone in those circumstances. My heart goes out to many birthing people who gave birth to a dead baby during COVID,” Hooyo told us.
Parents who make this choice can direct that there be no intervention upon birth. Hooyo says her son likely died during delivery; he was gone when she held him. They were able to spend time with him and later perform the Janazah prayer, the Islamic funeral prayer for the deceased.
“It’s crazy the way the memory is so intact,” she told us. “The details ingrained in my memory. I think because I knew it was the only time we would have with him, I tried to absorb it all intentionally. I can smell the room if I think about it. I remember every minute, exactly what happened.”
The experience has also transformed her work; a doctoral candidate, she’s now shifted gears to research postpartum care after stillbirth, largely because she, like many others we spoke to, felt there was no clear path or no answers on what to do or how to grieve. She says most of postpartum care is largely in the context of live births, and the death of a baby coupled with the physiological response of a postpartum body needs more attention.
There are roughly 250 different places in the United States that offer perinatal hospice for parents who are not at medical risk and want as much time with the baby as they can. Doctors monitor the birthing parent and the baby and help them prepare for what will happen after the baby is born. But this service isn’t routine or free, and it isn’t offered everywhere. Only certain pregnant people are eligible, depending on whether it will be safe for them to continue pregnancy and deliver. Some people can’t bear the thought of waiting for their babies to die in utero or directly after, and some can’t bear the thought that they will. Dr. Steve Calvin, a maternal-fetal specialist in Minnesota, said that patients ask him whether terminating the pregnancy is necessary—whether they have to do it. He said he’s had some patients bullied by their providers into terminating, especially genetic counselors.
“I’ve always tried to be very careful,” he told us. “I just say here are the facts of what your baby has, it’s really serious, and I’m almost certain this is lethal. You are aware that ending the pregnancy is one of your options, but you could also continue the pregnancy to have the baby with you as long as possible. We are supportive of both those options.”38
Palliative care means they will monitor the baby and the birthing parent, but just like in end-of-life care, they won’t do anything to intervene, except to make the baby comfortable. Generally, the babies die either in the hospital or shortly thereafter. The care is centered around supporting the parents so they can focus on making meaningful memories.
But what if it’s not your choice? One such story reported by Frances Stead Sellers in the Washington Post detailed the case of one couple whose baby was diagnosed with a fetal anomaly. Deborah Dorbert and her husband, Lee, made a painful decision to end the pregnancy. At the time, Florida law banned abortion after fifteen weeks, but there was an exception that permitted a later termination if physicians agree in writing there is a fatal abnormality. But the doctors didn’t sign off in this case. She couldn’t afford to travel out of state.39
“That’s what we wanted,” Dorbert told the Post. “The doctors already told me, no matter what, at 24 weeks or full term, the outcome for the baby is going to be the same.”40
Instead, she had to tell her toddler son that the baby she was carrying would never come home. She suffered intense anxiety and depression. On March 3, 2023, she delivered baby Milo, born with Potter syndrome, which meant he had nonfunctioning kidneys and underdeveloped lungs among his many medical problems. Everyone wanted him to live, but he survived only for ninety-nine minutes.41
“When he came out you could hear him gasping for air. He was really trying to breathe,” Dorbert told the Post. “He didn’t cry when he was born and he didn’t open his eyes at all, but I mean, he struggled.”42
Morgan Nuzzo, the nurse-midwife who cofounded a third-trimester abortion clinic, wondered to us: “If a baby lives for ninety minutes and is struggling, do we feel good about that? Some people choose that, but my values align with something fast and quick. We have folks come in who say I can’t bear to take this baby off life support—I can’t make the decision after it’s born. I totally get that.” 43
For a growing number of women living in states with strict abortion laws like Dorbert, it’s not a question—they have to carry the baby as long as it survives. Palliative care and support might be a welcome answer, but the palliative care field is small; when we spoke, Dr. Calvin had only roughly three instances out of thirty-three hundred births where the palliative care model was an option because of maternal health concerns.44 In 2019, a committee with the American College of Obstetricians and Gynecologists studied roughly forty hospitals and found where 41 percent of the deaths were neonatal, only 2 percent received palliative care, in part because of a lack of training, physician education, and other barriers. Still, the benefits justify their continued development, the committee reported.45
Palliative care is also largely rooted in Christianity and causes discomfort to some on the abortion rights side of things. Proponents of palliative care say it transcends the abortion debate and is an option for women who are looking for as much time as possible. This is, yet again, a complicated, gray area where politics shouldn’t really be an issue. If we all thought about pregnancy loss on a spectrum, then it wouldn’t be a problem for parents to decide whether they’d prefer to terminate or find palliative care for a baby with a fatal diagnosis.
When all this is happening, the birthing parent often isn’t focused on their own health or well-being; they’re trying to manage a terrible, complicated, and upsetting end of a pregnancy. But they probably ought to be, because maternal mortality in the United States, or the rate at which a person dies within a year of childbirth, is among the highest in the developed world.