With Amy Coney Barrett’s confirmation hearing underway to fill Ruth Bader Ginsburg’s seat on the Supreme Court, the national conversation has again turned to abortion rights. While Barrett refuses to give her position on Roe v. Wade, she has criticized the landmark case in the past and her record suggests she’d be a reliable vote to limit access, including restricting ‘very late-term abortions’ — a hot-button topic that’s easily misunderstood when you strip away the nuance involved.
In recently resurfaced comments from a Fox News town hall in 2019, former South Bend, Indiana mayor Pete Buttigieg rightly points out the part we miss when talking about “late-term abortions.”
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“Let’s put ourselves in the shoes of a woman in that situation,” Buttigieg said. “If it’s that late in your pregnancy, then almost by definition, you’ve been expecting to carry it to term…[Families then] get the most devastating medical news of their lifetime, something about the health or the life of the mother or viability of the pregnancy that forces them to make an impossible, unthinkable choice.”
Buttigieg is right to shine a light on the devastating and complex “choice” that women who have discovered their fetus is unlikely to survive outside the womb must make. These women, as well as the parent(s) who felt they would be unable to care for a child with the given diagnosis, can be held up as examples for pro-life individuals who might be swayed that abortion procedures are, under extreme circumstances, necessary.
But the reality is, for families that have terminated for medical reasons (also known as TFMR), these are real people: not “stories” or “examples,” or some kind of mathematical proof of how much we need to protect our reproductive rights. Rather, these are individuals with complex, nuanced, grief-stricken experiences that are often left to suffer alone, not even welcomed by the pregnancy loss and miscarriage community writ large. Many of these families don’t feel they can be candid about what they’ve been through, even with friends and family, for fear of judgment. These losses often get shrouded in the silence, stigma, and shame that surround other pregnancy losses, and get additionally stigmatized by the virulent politicization of abortion.
As a psychologist specializing in reproductive and maternal mental health, I’ve found that my office is one of the few places women feel comfortable sharing about terminating for medical reasons, faced with this so-called “choice.”
There is no one-size-fits-all approach to navigating this arduous, life-changing “decision”, and so I listen as they parse out how to proceed, how to make peace with what will come next, how to share with loved ones about the particulars of their impending loss, and ultimately, how to move forward free from self-judgment.
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As the creator of the #IHadaMiscarriage campaign, and having experienced a 16-week miscarriage, I have seen firsthand how much these women and families need support from someone that genuinely understands their particular kind of loss — and how challenging it can be to find resources that speak to all aspects of pregnancy loss.
I spoke to seven women from the #IHadaMiscarriage community about terminating for medical reasons, the unabashed stigma, the epic grief, and how we can more adequately embrace families who experience this type of loss.
Is It a “Decision”?
First, the idea that this is a “choice” (in the same way we often think of most abortions) can be damaging in and of itself. In the case of many who have TFMRs, doctors may be informing parents that the baby will not survive under any conditions, and “choosing” termination will spare both baby and mom a world of pain.
Maeve* received this kind of news after five weeks of intensive testing, which began when she was 13 weeks pregnant. “They explained to us that our son’s condition was so severe, they called it ‘incompatible with life,’” she says. “There are no living humans with achondrogenesis [the diagnosis her son received] — all babies with it die in the womb or soon after birth. And it’s an excruciatingly painful death.” Because his bones were so brittle, she learned, they would soon start to break in the womb. Then, nerve connections for pain would form, so he would start feeling it. “He would likely not survive birth, because his bones would be crushed, but in the slim chance he did, he would die shortly after from suffocation, because his rib cage was too small for his lungs,” she explains. “That was when we knew, without a doubt, that the only thing we could do for our child was give him a peaceful death.”
Even for families who aren’t given life-threatening diagnoses, the word “choice” can feel like a loaded and inaccurate term. At 16 weeks along, Brooke* was told her baby had trisomy 21 (a chromosomal marker for Down syndrome), and after an incredible amount of soul searching, proceeded to terminate. “I have to often remind myself that this decision was not about whether or not I could care for the child or how much I could love this child, but what was in the child’s best interest. Because there is a spectrum of intellectual and medical needs that my child could have had, I felt I could not take the risk that they could potentially have to endure heart issues and cancer, amongst many other issues, just because I wanted a baby and knew I could care for it.” While Brooke acknowledges that she did, in fact, make a choice, the misconception that terminating her pregnancy was the outcome that she wanted prevents her from sharing the details with many people, she says.
“I was so angry that the ‘decision’ fell on me. I would think: God please, please just take my sick baby so I don’t have to make this choice.”
Women who do make this choice are still deserving of respect, privacy, and understanding, something that many women in Brooke’s shoes don’t often receive, especially when the diagnosis isn’t clear cut or the outcome isn’t black and white.
Alexis* received a litany of diagnoses at her 12-week scan: Her baby had an absent nasal bone, increased nuchal translucency, an echogenic intracardiac focus, and echogenic bowels. “These indicators were associated with Down syndrome, with additional complex medical conditions such as gastrointestinal obstruction, intrauterine bleeding, and intrauterine growth restriction being a concern,” she explains. “Our little girl did not have a [simple] diagnosis that could improve with surgical care, medical care, or different therapies. We would never know the severity of her diagnosis until she was born.”
She grappled with this reality, trying to determine what to do. “How do you define quality of life? I had to ask myself this over and over as we were walking through our diagnosis and decision-making process, to really come to a clear decision — one that I knew I would not regret and one that I knew would be the best for myself, my family and ultimately, my daughter. Therapy was a place that I was able to process all of these thoughts, block out conversations with my husband, and truly confirm the decision I wanted to make,” she says. “Not him, not we, but I — the woman carrying this pregnancy who would experience the physicalness of ending our wanted pregnancy.”
Maeve said while awaiting the final results of the genetic testing done on her son, she found herself praying for a miscarriage, just so the illusion of “choice” would be off the table. “I know this might sound terrible, but in that week between diagnosis and decision, that’s what I wanted. I was so angry that the ‘decision’ fell on me. I would think: God please, please just take my sick baby so I don’t have to make this choice.”
“I didn’t choose death. Death chose me. My ‘choice,’ along with millions of other women, was made in love.”
Norah* puts it this way: “I didn’t choose death. Death chose me. My ‘choice,’ along with millions of other women, was made in love.”
A Culture of Secrecy
There aren’t solid statistics that adequately capture how many pregnancies end this way. This may be because many, many people who have TFMRs do not tell people the truth about how and why their pregnancy ended, often borne out of understandable fear of the searing judgment and stigmatization that surrounds this outcome. This fear is largely linked to the politicization of the very idea of termination.
Justine*, who was raised Catholic, says most of her friends and family still do not know what happened to her son. “Only our immediate families know that we terminated, as well as a few select friends of our inner circle. We chose to only tell some people due to not wanting to be judged, which I believe is rooted in how society portrays termination. Our story is that our son was stillborn.”
Maeve says that because her doctors didn’t call her termination an abortion when discussing it with her, she didn’t realize it technically was one until much later. “I feel like I can’t share publicly how my son died because I am scared to death of the judgment I could potentially receive. I don’t think I can handle it. I’ve had to defriend tons of people on social media who are pro-life because their posts are so triggering (and ignorant),” she says. “I am thankful for the right to have been able to choose peace for my child. I don’t know if I would be alive if I had been forced to birth my baby knowing he would have suffered in my womb for weeks and then died an unimaginably painful death. That would have tortured me more than choosing a peaceful death for him.”
Judgment creeps in from the most unexpected places sometimes — Norah’s own mother told her: “No one ever has to know you ended the pregnancy”, implying she had done something bad, something shameful, unspeakable even. “That was when it hit me that I would be judged or that society would judge me,” she says.
Catherine* feared judgment even from the medical staff performing her termination. “No one told me what it would be like. The doctors kept saying “you will give birth,” but my mind didn’t let me think I was actually going to have a baby. I wanted the nurses to know: I wanted my baby. I didn’t want them to think I was terminating a late pregnancy for any other reason than the medical diagnosis we received. Of course, they had notes about [why I was terminating], but I still felt so ashamed about being there. It wasn’t until the nurse asked if I would like to see the baby, I roared a gut-wrenching cry.”
Women who terminate for medical reasons often feel alienated by the pregnancy loss community as well. Lucy* experienced this: “Even in the loss community, people can be judgmental and look down on families who have been in my position. I have heard ‘how could you choose to terminate; I would have gladly taken the baby’ and ‘I had a miscarriage; I would never do that because I want a baby so badly.’ But I don’t think people realize the magnitude of the situation until you are in it.” Religious and political beliefs only complicate her struggle to cope with losing a child, Lucy says.
“There are many who can’t understand why anyone would ever terminate a pregnancy — or would make it impossible and illegal for it to even occur. But if people were in our positions, their tune would change. It is beyond religion or politics when you find out your child is sick.”
Even those who share about their TFMRs may choose which details to disclose judiciously, for fear of being admonished. Brooke, for example, is honest that she terminated for medical reasons, but not about what those medical reasons were. “Not many people know that I terminated due to a Down Syndrome diagnosis. I worry that because of the way society views Down Syndrome, I would be much less accepted for terminating for that reason.”
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A Different Kind of Grief
Because of the enormous complexity that goes along with terminating for medical reasons, the grief that follows the procedure can feel insurmountable and oppressive, as well as impossible to explain to others.
Justine says her feelings following her loss ping-ponged wildly. “I’ve felt it all: intense anger, extreme sadness, hopelessness, fear that this will happen again, which has been incapacitating at times. Jealousy has also consumed me — that many other people didn’t have to make a decision like this; jealousy towards all the couples who pop out children sans issues; jealousy towards women who have innocent carefree pregnancies because they’ve never endured a trauma like this,” she says. “After we induced labor and said goodbye to our son, I ended up becoming suicidal — that’s how impacted I was.”
“Jealousy has also consumed me — that many other people didn’t have to make a decision like this; jealousy towards all the couples who pop out children sans issues; jealousy towards women who have innocent carefree pregnancies because they’ve never endured a trauma like this.”
Norah* spoke of a very specific type of grief that often accompanies pregnancy loss — a combination of anguish and fear that the anguish will dissipate, as the intensity of the feeling is proof of the baby that once was. “I’ve been trying hard to work through [my grief], but find it very difficult to ever completely mend my broken heart and, honestly, I’m not sure if I would ever want to. That’s when I feel her the most.”
She adds that while talking about her loss can be seen by others in a negative light, it’s still important to do so. “I want people to know the complexity of being faced with such an enormous decision and how much love is surrounded by it.”
The guilt linked to ultimately having to make the “decision” to terminate only compounds this already-challenging type of grief. “I felt like the additional burden of choice added another layer of grief to my mind and body,” says Alexis. “Trying to get others to understand the complexity of making a decision like I did, the psychology behind that…it was impossible.”
Maeve has found herself resenting how TFMR, and its subsequent grief, is surveilled even within the pregnancy loss community — there is a faux hierarchy of grief, even among this group, where TFMR often doesn’t get included or wholly acknowledged because people view this type of loss as elective. This is false on its very premise, of course. “I feel like TFMR is way more complicated to process than miscarriage or stillbirth. The perception of moms who — even with a clear diagnosis of a fatal/incompatible with life genetic disorder — choose to carry to term are somehow saints for doing so [paints me] as a monster,” she says. “They are praised for how strong and loving and wise they are. That’s great if that was their decision for their family; I respect that and I have empathy for them because it is freaking hard. I just want the same respect and the same perception. Choosing to let my son go peacefully is just as admirable in my book.”
Lucy, who says that she was finally able to be open and honest about her experience with the help of her support group, agrees. “I realized that speaking about my daughter is really all I have to remember her. I never got to experience being a mother outside of carrying her, and talking about her keeps her memory alive for me. I have chosen not to apologize for my grief, because it will always be with me.”
*All names have been changed
Jessica Zucker is a Los Angeles-based psychologist specializing in reproductive health and the author of I HAD A MISCARRIAGE: A Memoir, A Movement.