In December 2014, I had an abortion at 29 weeks, after my first baby was diagnosed with a brain abnormality called lissencephaly. The early diagnosis—lissencephaly is sometimes not diagnosed until after birth—meant her case was severe and her prognosis was grim: We could expect her to live for two to six years while suffering from frequent respiratory infections and intermittently choking on her own saliva. Her cognitive development would be arrested or even reversed by painful seizures. She might have been able to smile socially and/or track motion with her eyes, but maybe not. Eventually, one of the bouts of pneumonia or choking episodes or complications from one of the surgeries needed to sustain basic life functions would have killed her.
I believe there are fates worse than death. My maternal grandmother was technically alive for four years after the aneurysm and series of strokes that killed her, and I do not think she would have chosen that purgatorial coda. Just because we can prolong life with medical interventions doesn’t mean we should. I believe torturing babies in the service of what my friend Grace Ombry calls “cosmic self-improvement projects” is wrong. I believe torturing babies for any reason is wrong. Kate Carson, another friend whose words are so embedded in the way I think about baby loss and grief that I don’t even know when I’m quoting her anymore, says she was presented with the option of giving her baby only one of two precious gifts: peace and life. Like her, and like many parents faced with this impossible binary, I chose peace.
By the time my baby’s brain abnormalities could be diagnosed, I was past the legal limit for abortion in Michigan, so my doctors referred me to a clinic in Colorado. It was one of just four clinics in the country that my doctors knew of that would perform a procedure that late. My doctors would have done it themselves if I’d decided to end my pregnancy at 23 weeks and six days, when the best prediction they could give me was that my baby had a 70 percent chance of mild to moderate cognitive impairment and developmental delays and only a 30 percent chance of more severe problems or perinatal death. In the face of those odds, I chose life.
I never felt pressured either way by my excellent, compassionate, patient medical team. They did their best to bring me up to speed on the strengths and limitations of the different kinds of genetic screenings and fetal brain imaging technologies and blood tests they could do to help get me as much information as possible as soon as possible. One doctor told me to take as much time as I needed to make sure I was making a choice I could live with, even as we all knew I wouldn’t have enough time or information to make a decision before the 24-week limit. If I hadn’t known I would be able to afford to travel for care after the deadline, I don’t know what I would have done at that first crossroads. 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.
Sometime during the week I spent in Boulder, Colorado, having my first baby killed, somewhere in between getting the rental car jumped by one of the earnest teenagers working at the hotel’s front desk after I accidentally left the headlights on overnight and musing with my husband about what our waiter must think of an obviously pregnant woman ordering (and then gulping down) a glass of wine with dinner, I Googled something like “what kind of mother has an abortion at seven months?” And that’s how I found my way to the online support group now known as Ending a Wanted Pregnancy.
I never thought of myself as a support group person. I imagined such a person as one of the pathetic caricatures from Fight Club: Meat Loaf with bitch tits or Chloe, described in the movie as “the way Meryl Streep’s skeleton would look if you made it smile and walk around the party being extra nice to everybody.” Chloe has to be dragged away from a mic still elaborating on her desperate plea for literally anyone to have sex with her before she dies. It is clear that, in this land of the newly sober and rapidly dying and infinitely sad, the only people anyone might want to have sex with are the protagonist and his goth manic pixie dream girl crush, who are uncoincidentally both support group tourists.
It’s his acerbic portrayal of suffering people that reassures me Chuck Palahniuk probably never engaged in the kind of grief tourism he describes. The kinds of people who attend support groups may be united by their acute experience of suffering, but they are rarely pathetic, like Chloe. What I discovered when I joined Ending a Wanted Pregnancy, and also started attending the pregnancy and infant loss support group hosted by my local Lamaze branch, was a lot of people not much different from me who were also learning to face up to and speak their most difficult truths in a supportive environment.
Pregnancy loss is not the kind of tragedy that discriminates much. Some kinds are slightly more common among black women in the U.S., likely because they are influenced by forms of violence and inequities that cause disparities in many health outcomes. But when you’re talking about conditions like lissencephaly, which occurs in 1 out of 84,000 pregnancies, everyone has approximately the same chance of getting hit: practically zero, but not quite. Someone has to be the one.
We have members from just about every social class and racial demographic and religion and profession and political affiliation across the Anglophone internet-using world, if not in precisely representative proportions. It’s mostly married professional women in their childbearing years, but we also have noncarrying partners and dads, stay-at-home moms, single moms, active duty military (whose procedures are never covered by their health insurance thanks to the Hyde Amendment), and dozens of parents whose stories of infertility and IVF journeys would break your heart even before you got to the part where the baby they finally got pregnant with turned out to be so sick they decided death was the kindest choice. We have parents with living children or other family members who have the same conditions they ended another pregnancy for, which makes sense given that some devastating conditions are inherited. Our membership is heavily concentrated in North America and the U.K., but we have members from all over the world.
Many parents come to us in the days or weeks after they’ve just found out a baby they’re still in full-on, head-over-heels, new-parent-infatuation love with will never get to wear the little booties in the pregnancy announcement photo they’re now wishing they hadn’t posted on Facebook. They often come to us terrified that other people in their lives might find out the whole story of their loss and judge them for it, or worse. Sometimes filling out our membership application is the first time they’ve shared their whole truth, and thus the full extent of their grief, with anyone.
When I first applied for membership, I was terrified that they might reject me because I was so far along in my pregnancy. My brain did not internalize my doctors telling me they routinely refer people in situations like mine to the Boulder Abortion Clinic. When I wanted to know what the procedure I was about to undergo would be like, I found a description right on the clinic’s website. Somehow, though, it just didn’t sink in that other people had gone through this before. It felt like I was the only one. And then I received a reply from a woman who had not only been to the same clinic and seen the same doctor, but who had been even further along in her pregnancy when she got her diagnosis. I don’t think I would have been any more surprised if she had popped her head through my laptop screen and kissed me on the mouth.
The reply was from Kate Carson, whom I mentioned above. She makes sure no one’s posts in the group go unanswered. She remembers who had a nightmarish time getting the results of their genetic testing and who had to wrestle with insurance so she can play matchmaker for the similarly aggrieved, and writes personalized love letters to all of us whenever we cry for help. She and Grace Ombry, also mentioned above, and me and a dozen other veteran members form the current administrative team; however, the hours of talking with people who’ve been there that make this shit survivable aren’t something one or even a dozen people can provide. The work of emotional support is shouldered by the entire membership.
We reach across the distances between us to sit with one another in the darkness. We help one another learn to say the words, “My baby died.” We speak one another’s missing children’s names. We exchange practical advice about what to do if your milk comes in, whether and how to tell your co-workers about your loss, and ways to get out of or get through your sister-in-law’s baby shower. Those of us who are a little further out from our losses demonstrate, by our very existence, that it is possible to survive. We often call ourselves “the club no one wants to join,” but once you’re in, you get to witness—and be a part of—the ordinary miracle of people finding the strength to go on when they thought they could not and total strangers offering each other unconditional compassion and support. If you’ve ever experienced the kind of grief that cleaves your life into a before and an after, you know how deeply you can become bonded to the people who hold you through the shattering aftermath. We are a kind of family, 1,070 heartbroken members strong.
My grief family is collectively hurting right now. It’s not like we’re new to dealing with anti-abortion rhetoric. Clinic protesters and pro-life family members on social media are our water cooler chatter. Some of us have shallower reserves for dealing with politics, and the newly bereaved are always a little more tender, but usually it’s just part of the everyday static of grieving an abortion.
But this week is different. The backlash against New York state enacting the Reproductive Health Act and Virginia Democrat Kathy Tran introducing a bill to loosen restrictions on third-trimester abortions in her state has even veteran grievers reeling. To have the nation recoil in disgust and horror at what was our lives has a lot of us feeling tense and exhausted. And then our president called us murderers in his State of the Union address and promised to make what many of us did illegal. Half of his audience—our elected representatives—stood and applauded that line. We watched in horror, or didn’t in protest, but there’s no escaping the stigma being broadcast from the nation’s highest office. We came to the group and raged and cried and told each other he has no idea what he’s talking about. He doesn’t, but it still hurts.
For some newly grieving parents in deeply anti-choice communities, it’s been cataclysmic, turning their social media feeds—the very conduits they need to feel connected to other people—into landmines of painful judgment. Even though most of our members did not have late-term procedures, the vast majority of late-term procedures are medically indicated, so the condemnations feel especially personal. It feels like they’re talking about all of us.
At the same time, it feels like they are not actually talking about us at all. Just like President Donald Trump ranting about babies being ripped from their mother’s bodies at nine months in the third presidential debate, people who condemn this law often have no apparent familiarity with the circumstances that cause people to seek abortions after 24 weeks. They assume the babies aborted after this point would otherwise be healthy and the only reason to end any pregnancy is because you were careless with sex. They seem to assume ending your pregnancy after 24 weeks is something you do because you find pregnancy suddenly inconvenient.
I still remember how, as I was going through airport security on my way to Colorado, a bubbly TSA agent gushed at me about how cute I looked with my baby belly. I’m sure she was confused when my face crumpled and I turned away in tears. I also remember how, the day Dr. Hern stopped my baby’s heart, I had nowhere else to go afterward but back to the La Quinta Inn, where my husband tried to coax me to eat some of the leftover takeout littering the dresser around the television. I couldn’t even go home and cry into my own damn pillow. Nothing can prevent some parents from enduring the heartbreak of losing a wanted child. New York’s law will protect a few more people from those small indignities. More importantly, someone who cannot travel will now be able to make the choice she must.
It’s the first victory for reproductive choice in what feels like forever. The members of our group are especially attuned to the way asterisks have been hung on Roe v. Wade since the 1970s. We know how close many of us came to being forced to continue pregnancies that would have tortured both us and our babies. We watched the nomination of Brett Kavanaugh with horror, not only because of the implicit acquittal of a credibly accused attempted rapist, but also because we knew it would likely result in abortion being further restricted in many more states, meaning more families in crisis pregnancies being forced to travel, maybe even for routine first-trimester procedures. Some of them inevitably won’t be able to, whether for financial or logistical or medical reasons.
The only thing I could imagine that would have been worse than my daughter dying is my daughter living. Before Dr. Hern gave me the shot that would stop my baby’s heart, he explained that it would work gradually over a period of several hours and that I might continue to feel kicks and movement during that time. Late that night, long after I knew she had to be dead, I felt a kick. It was near the injection site, so I knew almost instantly that it was probably just some kind of cramp or nerve twitch. But for half a breath, I thought maybe the shot hadn’t worked, and every fiber of my being screamed with the desire for that to be true, for her to be alive. Rationally, I knew that even if she had somehow survived, that would just mean they’d have to try again the next day. But of course I didn’t want her to be dead. She was my baby.
The only thing that could have been worse than her dying would have been to continue knitting her small body together with my body, to keep growing bigger and bigger with her and go through a far more dangerous full-term delivery or perhaps even a C-section, should her brain swell with fluid, and then watch her be intubated and fitted with a feeding tube. 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. If you knew how fragile your grasp on the power to save your own child from medical torture was, you might pay more attention to legislative changes like the Reproductive Health Act, too.
And we won. It’s a victory that feels personal in part because the law was all but willed into being by the righteous fury of Erika Christensen, one of our own. But it’s hard to celebrate when the response to this law has just reminded all of us how deeply misunderstood or even hated we are for an experience that many of us feel to be defining, and that we do not regret.
As always happens when abortion is in the news, we have had an uptick in applicants. Kate noticed that this time we are getting an unusually large number of new members who are years out from their losses. People who had abortions nine, 12, 20 years ago are suddenly seeking us out, alarmed at how fragile their carefully tended return to something like normalcy turns out to be when everywhere you turn, it seems like people are regarding you with eyes narrowed to slits and thinking murderer.
When I got pregnant again, I did so with a 2.5 percent risk I might have another baby with lissencephaly and no way of knowing before the anatomy scan. Because brain folding occurs so late, in both of my subsequent pregnancies, I chose to get an extra scan between 25 and 28 weeks, just to double-check. Every time I walked into that clinic, I walked into the place where I learned my first baby was so sick she might die. I understood how unlikely it was that this would happen again, but I have become emotionally innumerate about pregnancy. The smallest risk feels gargantuan to me, and though my pregnancies that ended in living children are clearly far closer to the statistical norm than my loss, the miracle of their existence will never cease to amaze me.
I can’t tell you what I would have done if I had had to have a second abortion at 20-plus weeks. Walk into the forest in Alaska and learn to survive on berries and roots? Devote myself to becoming a professional wrestler with the moniker Lilith, Eater of Babies? Most likely, I’d just go on building monuments to my dead bab(ies) out of words. But if one of those late scans had discovered lissencephaly, or any of a dozen other devastating conditions I’m now intimately familiar with thanks to my grief family, I would have gotten back on a plane and flown back to Colorado to deliver another baby, still, into the arms of Dr. Hern. If that is murder, then I am a murderer, and it is only by dint of what feels like stunningly good luck that I’m not a serial murderer, although that seems like a strange way to refer to the parents in my group who have gone through the nightmare of losing multiple children after a poor prenatal diagnosis.
One common response to our stories is to question the credibility and competence of our doctors and how they could have known what they claimed to know. But then, the next minute, we are attacked for not trusting those same doctors to work “miracles.” We are asked if we had autopsies to verify our babies’ diagnoses. Many of us did, some of us did not have the option of doing so but wish we had, and some of us would have gotten no more information from doing so because other forms of medical testing had already provided what explanations were possible, or they hadn’t provided any explanation at all, which is another loss we have to mourn, and in what other medical tragedy do people ask you if you verified every bit of information available to you? We are asked if we prayed.
I’m not sure I’ll ever understand how incurious some pro-life people seem to be about the reasons people seek abortions. In response to the version of my story I posted recently on Facebook, I’ve had people confidently claim that no one’s talking about people like me, that what I did was between me and my doctor. They say they’re talking about people who “just change their minds” at 24-plus weeks of pregnancy about whether they want the presumably healthy fetus cresting today’s fulcrum of “viability” inside them.
Oh, those people. Has anyone ever met one? Where are the doctors offering late-term abortions for careless “oops” pregnancies that somehow progress into the sixth month? A former abortion provider who worked in Kansas when it had no gestational limit says she was never asked for one. But fine, let’s say they exist. What do you imagine got in the way of these women ending their pregnancies earlier? Do you think they were just having so much unprotected sex that they were too busy to realize that if they didn’t want a baby getting in the way of all that rampant fornication, they’d better do something about it posthaste? If that doesn’t sound especially believable, why not? What’s a more credible reason someone might wait?
There is no magical, painless, easy, cheap way out of late pregnancy. Many of us who get diagnoses after 24 weeks labor and deliver our babies intact because that is the safest way to get them out of our bodies while preserving our lives and fertility. It’s just as much fun as every mass media portrayal of labor has ever made it out to be, except you know that the baby your body is working so hard to push out will never take a breath. (And don’t forget about the travel cost and logistics, and the $12,500 up front for the procedure, often with no guarantee the insurance company will reimburse it.)
I was afraid I was going to die during my procedure, and not because it was all that painful. (I refused pain medication until just before delivery—I actually wanted it to hurt more.) I was afraid because when my husband and I were watching the ancient video about birth control that abortion providers in the state of Colorado are required to force patients to watch, the Ghost of Inadvisable Haircuts Past version of Dr. Hern said that the rate of complications even in late-term abortions is very low, less than 1 in 10,000. My husband reached over and squeezed my hand, because when you’ve already been on the bad end of 1 in 84,000 odds, a 1 in 10,000 risk of complications—including death—can feel like a virtual guarantee.
I’ve read at least one argument claiming that the reason people react the way they do to laws like the Reproductive Health Act is because most people don’t realize why these abortions happen. That people don’t know about these abortions because our stories are so privately held. That simply isn’t true. We tell our stories of late abortion and medically indicated abortion all the time, not just in our support groups, but in public, often along with our real names and faces. We’ve told our stories in the Guardian, the Washington Post, the Boston Globe, the New York Times, USA Today, the Daily Rumpus, Longreads, BuzzFeed, Mother Jones, the Walrus, Reddit AMAs, NPR’s This I Believe, Michigan NPR’s Stateside, The Moth, Jezebel, Elle magazine, Bustle, Self, Slate, Scary Mommy, Still Standing, Mommyish, Andrew Sullivan’s blog (c. 2009 when individually authored blogs were still relevant), personal blogs, Instagram stories, amicus briefs, and dozens of Facebook posts. We open our veins for the public all the time, even though many of us (and probably even more of our spouses and concerned mothers-in-law) wish it didn’t feel necessary.
I’ve never encountered a single living example of the theorized monster mother who would decide at 24-plus weeks of pregnancy that she simply doesn’t want a seemingly healthy baby, and she doesn’t want it enough that she will find a doctor who will stop its heart and induce labor so she can push a dead baby out of her body. That doesn’t mean those people don’t exist. But it’s hard to believe that most people would go through the horror of a late-term abortion unless they were being held hostage by the threat of something even worse. That might not always be a horrifying health diagnosis for the child—it could involve mental illness or drug addiction or traumatic rape or other types of abuse. But no one is so desperate to get an abortion after 24 weeks that they’re willing to go through what it involves and simultaneously so feckless they’re willing to end a pregnancy for no reason whatsoever.
I also don’t demand these women share their stories. I think we should trust women and families and their doctors and chosen moral and spiritual advisers to make the choices that align with their values. We must have enough moral imagination and respect for one another’s bodily autonomy to believe there are valid reasons for seeking abortions at any point of pregnancy. We must have enough respect for one another’s privacy to accept we may not always deserve to know what those reasons are.
My first day in Colorado was a whirlwind of paperwork and blood tests, the video about birth control methods, a barrage of questions. They checked and double-checked that I was there of my own volition and my baby was the expected size for her gestational age. The one thing no one asked me to elaborate about was my baby’s diagnosis. I remember the way “lissencephaly” sat uncomfortably in Dr. Hern’s mouth—I’m not even sure he knew what it meant. It only occurred to me much later that he didn’t need to know. He knew I was there, that I had flown halfway across the country mere days after getting a diagnosis severe enough that a high-risk OB at the University of Michigan had referred me to him. Once he had done his best to ascertain that I had not been coerced or deceived, that was enough for him.
It took me a while to realize that his lack of questioning about the diagnosis wasn’t an oversight. He didn’t need to ask, because he trusted me. He trusted my judgment at a moment when I wasn’t sure I trusted my judgment. He did not try to determine whether he thought I should have this abortion, or whether my doctors in Michigan thought I should, or whether anyone else had any opinion at all about what should happen to me and my baby. Another of his patients, Erika Christensen, who traveled to his clinic from New York, puts it this way: “Dr. Hern himself empowered me in such a radical way just by asserting matter-of-factly that my life had value and that I didn’t owe anyone an explanation, not even him.” In a moment when I felt utterly without agency, he ensured that I had the only kind of agency that really mattered.
I wish people who react in outrage to late-term abortion, who question how it’s allowed or why it’s necessary, would pause and listen to some of the answers those of us who have had late-term abortions have provided. We do not owe it to anyone to tell our stories, but many of us have offered them up all the same. We tell them to honor our babies and to try to smooth the path for all the families to come. We expose ourselves to your scrutiny and judgment for the same reason we released our babies from suffering: Because our pain is eclipsed only by our love.
Thanks to Brian Cook and my co-admins for helping shape this piece, and thanks to the members of Ending a Wanted Pregnancy for making the community what it is.