TFMR: Parents who ended a pregnancy for medical reasons are helping each other cope

TFMR: Parents who ended a pregnancy for medical reasons are helping each other cope
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Emma Belle was hopeful about this pregnancy. Anxious, but hopeful. In their quest to have a baby, Belle and her husband had been through three rounds of ovulation induction, a miscarriage at five weeks and two rounds of intrauterine insemination. When she was still pregnant after a few months in late 2020, she began to allow herself to imagine actually parenting a child.

Then the bad news came. Belle, who lives part time in the United Kingdom and part time in Dubai, recalls that at her 12-week scan, “the sonographer’s face changed. She said, ‘I can’t not tell you what I can see.’ ” A genetic test later found a 99 percent chance the baby had Edwards syndrome, also known as Trisomy 18. Doctors told Belle that the baby would likely either die in utero before 28 weeks or live only a few hours or days.

Belle, 39 at the time, was told she could choose to terminate her pregnancy or continue, waiting for nature to take its course. “Choices you would never choose,” Belle says. Pregnancy had been hard on her body. “To carry on being pregnant, to know that I would either have to have a stillbirth or [have] a birth and then watch my baby die, which would then take even longer to recover from,” Belle says, “would then mean that we’re even further away from trying for a sibling. Which might mean that we totally lose our chance of having siblings, or living children full stop.” Belle terminated the pregnancy. She and her husband named their late daughter Willow.

Afterward, Belle knew she needed help processing what had just happened. A full-time mentor to women recovering from trauma and managing bipolar disorder, Belle assumed she would be able to find specialized support groups. But all she found were a paltry few forums scattered across the Internet where users were discussing the phenomenon that has come to be known online as “TFMR” — termination for medical reasons.

So she started posting about the loss on Instagram, where she had already chronicled her infertility challenges. Soon, “I was spending six to eight hours a day responding to DMs,” she says. When she asked in one post whether anyone might be interested in forming a support group, she immediately had dozens of participants. “I was like, ‘Right, okay,’ ” she says. “I think there’s really a need for this type of space, where we’re not flowering up how we feel.”

Terminating pregnancies for medical reasons — reasons that affect either the pregnant parent or the growing fetus — has long been a taboo subject, so much so that people who do it often obscure the details when they talk about it, even within their own families. But recently, TFMR parents have begun to find one another online, on Instagram in particular, and carve out a distinct place for themselves. A handful of leaders are emerging, connecting others to resources and to one another. Belle is the growing network’s nucleus.

Many TFMR parents describe feeling alienated from conversations about both abortion and baby loss. They didn’t initially want to end their pregnancies nor did they simply lose them. Because termination for medical reasons is technically abortion, though, in the United States the option is starting to disappear: Texas’s new S.B. 8 and some of its copycat laws — like the ones just signed in Idaho and Oklahoma — make exceptions for medical emergencies when a doctor attests that the pregnancy threatens the expecting parent’s life, but not the fetus’s. And a pending Supreme Court case over a Mississippi law could upend the 49-year-old abortion protections set by Roe v. Wade.

Less than 1 percent of pregnancies lead to conditions of the child physicians might consider incompatible with life, estimates Lynn Simpson, chief of maternal and fetal medicine at Columbia University’s Irving Medical Center. Some parents choose to let such pregnancies end in miscarriage, stillbirth or natural death shortly after birth. It’s a relatively small population, then, that has made the same decision Belle did — but @tfmrmamas, the Instagram account Belle launched in the aftermath of her own termination, aims to reach as much of it as possible. She also offers support for parents who have terminated pregnancies to protect their own health, an experience whose prevalence is harder to measure but can shatter individuals in its own unique way.

In a recent post on Instagram, in black sans-serif text against a soothing light-gray background, Belle wrote the following: “Having thoughts like ‘hoping you will miscarry’ or ‘hoping the heart will stop,’ so that the ‘decision’ can be taken out of your hands, are normal when facing TFMR.”

“I wasn’t just hoping I was BEGGING God for it,” one user commented, with an emoji face crying a single tear.

“Me too,” responded another user. (Two accompanying broken-heart emoji.)

So far, @tfmrmamas has just over 5,000 followers. Belle has also launched a website, a podcast and Zoom support groups where parents can talk to one another. “Finding someone in your hometown or in your state or county with [your same] diagnosis is not always achievable,” Belle says. “Whereas, because of how it’s set up, I could have a mom in South America and a mom in France with the same diagnosis, and they can connect.”

Erica Rozmid, a 29-year-old psychologist in Los Angeles, terminated a pregnancy in 2021 after receiving a diagnosis of a rare brain disorder that can cause babies born alive to live only briefly and in largely vegetative states, punctuated by frequent seizures. “It felt cruel knowing she could have 800 seizures a day and die from the disorder,” Rozmid wrote in a blog post shortly afterward. “We had to end the pregnancy to save her from a life of suffering.”

In the aftermath, Rozmid — who makes a living treating kids who experience anxiety, suicidal ideation and self-harming behaviors — went looking for support and found the same void Belle did. “If I can’t find my own therapist who specializes in this kind of loss,” Rozmid says, “how can anyone else?” Six weeks after her termination, Rozmid launched an Instagram account called @tfmrpsychologist. “There are a lot of self-help support groups out there,” she says. “But I felt like I had both the personal experience of losing my daughter and the professional experience of being able to assist people through grief and depression and anxiety and trauma.”

Rozmid has since launched a website and a research project, in which she collects data via surveys from other TFMR parents about their experiences. She has used her findings to inform the trainings she hosts for counselors and therapists through the baby-loss support nonprofit Return to Zero: H.O.P.E., and “to give back more information to the community,” she says. “Like, ‘Hey, you’re not alone. Sixty percent of us, our milk comes in,’ ” referring to the body’s filling of ducts in preparation for breastfeeding.

Sabrina Fletcher, a 39-year-old American bereavement doula living near Mexico City, became @thetfmrdoula on Instagram and other platforms after her experience with TFMR, offering virtual grief circles for women and families. Jane Armstrong, a 35-year-old social worker in Austin, started the Instagram account @tfmrsocialworker after her termination, and recently opened her own practice where she specializes in counseling parents after TFMR.

The women collaborate often, usually with Belle as the common denominator. In addition to amplifying one another’s Instagram posts, they also make guest appearances on the same podcasts.Rozmid has hosted a webinar on Belle’s site; Fletcher has helped put on virtual workshops with Rozmid and Belle; Armstrong led a special support-group session Belle organized for anxious TFMR parents anxious after Texas passed its recent law. S.B. 8 effectively prohibits abortions after fetal cardiac activity is detected — usually around six weeks after the pregnant person’s last period, which is earlier than conditions such as Edwards syndrome and Patau syndrome (also known as Trisomy 13) or malformations such as neural-tube defects are generally detected.

Because the network spans continents, the parents who come seeking support have a wide variety of experiences accessing abortion. Belle herself, for example, traveled to England to have the procedure: Although it was also available to her in Dubai, she was told she’d have to remain awake.

But even in England, Belle and her husband, Gareth, nearly had to go to a regular abortion clinic — where Belle’s husband wouldn’t be able to accompany her past the waiting room and the couple would have had to make special arrangements on their own to get their baby’s remains cremated.

“I said, ‘So let me get this straight. I’m going to wake up, then walk out onto the street, where I’m going to see my husband with a pot of baby remains in his hand? Is that what’s going to happen here?’ ” Belle recalls. “At that point I freaked out. I was like, ‘I can’t do this. That will break me, and I’m so close to breaking right now.’ ” Instead, the pair used the money from their canceled destination wedding to have the procedure at a private hospital.

Because abortion access is contested in the United States, termination for medical reasons can come with extra red tape compared with other countries. As Simpson noted, variations in insurance coverage and providers’ skill levels with particular procedures can mean pregnant parents seeking TFMR get shuffled between offices and abortion clinics. In Texas, Armstrong treats many clients who have gone through TFMR after having had trouble accessing a safe or legal way to do it. Mixed into their grief, “there’s just a lot of fear,” she says. “When we add in these extra barriers, I think oftentimes TFMR parents are not considered. And if they are, they’re not considered with compassion.”

Armstrong also counsels clients who have been shamed or shunned for choosing to end their pregnancies. “Many people choose never to tell the full version of their story, to maintain those relationships with family or close friends,” she says. “That can sometimes deepen that sense of isolation. A lot of parents struggle with, ‘Am I dishonoring my baby’s memory by not being honest about their life and their death?’ ”

Many parents who terminate for medical reasons consider their decision a separate phenomenon from abortion. Rozmid, whose procedure took place in Los Angeles, barely even realized that’s what her doctors were recommending: “I didn’t even think about laws or legislation,” she says. Some purposefully refrain from using the word “abortion” to describe their experiences (though the American College of Obstetricians and Gynecologists does consider TFMR to be abortion, according to a spokesperson).

Some of the people in this story were reticent to connect TFMR advocacy and support for abortion rights. Armstrong, however, wasn’t. “Some folks say they’re against abortion, but if they hear a story like many TFMR parents’, they might say, ‘Well, but that’s different.’ ” A law like Texas’s S.B. 8, she says, “does not make that distinction.”

Tracking new action on abortion legislation across the states

Other new state laws restricting abortion also make no such distinction (though some, like the 15-week ban that just passed in Florida, carve out narrow exceptions for severe or fatal fetal abnormalities). In a Texas Tribune story about how S.B. 8 affects TFMR situations, the legislative director of Texas Right to Life argued that the law drew the line at cardiac activity in part because it’s objective, while the question of fetal “viability,” the ability to survive outside the womb, is a “judgment call from the physician.” Some argue that measures could be taken to improve the odds of survival or quality of life in some cases in which a grave condition can be detected before birth, and rare cases do exist in which children in such situations have survived beyond their first birthdays.

Of course, when it’s TFMR parents themselves who have espoused antiabortion beliefs, the grieving process becomes more complicated. “People come to me and they say things like, ‘I have always been dead-against elective termination and abortions. And now here I am, and I’ve had a TFMR.’ And they’re in chaos, really, about it,” Belle says.

“It’s a lifetime of belief and values that person’s had, and now they’ve got to unravel all of that at the same time as being in shock, at the same time as losing their baby, at the same time as having a postpartum body,” Belle adds. “My heart feels quite heavy because I see the amount of work that has to happen for them to make peace with all of these things.”

Belle is working on bolstering the support available to TFMR parents; later this year, she’ll release a book of 17 first-person stories from women who’ve gone through it. Her hope, she says, is to create a caring, honest environment where parents fighting through the many shades and textures of grief can feel normal. “They realize, ‘Oh, that’s quite a usual reaction,’ and ‘That thought is a normal thought, given everything that I’ve gone through,’ ” Belle says.

“The self-blame and shame can make people feel like, ‘I don’t deserve to grieve,’ or ‘I don’t have the right to grieve for my baby,’ ” she adds. “And that’s just not true.”

Caroline Kitchener contributed to this report.