Torre hadn’t always wanted to have kids — she was, after all, once a ‘90s punk rock teen who believed procreation was a self-serving planet-destroying impulse — but she began feeling the pull to parent in her 20s, and by her late 30s, her biological clock was ticking hard. Still, she didn’t feel financially or emotionally ready to parent alone. But then she met Oshin — they were a customer at the bougie pet store in Portland where Torre worked — fell in love, moved in together during the pandemic, realized they both wanted to be parents, and began the arduous process that is Trying to Conceive as a Queer Person. There were fertility drugs and a difficult and expensive search for a sperm donor who was, like Oshin, Armenian; and concerns that at the age of 40, it’d be difficult to conceive. But after four rounds of IUI, Torre and Oshin got the good news in December of 2021: They were pregnant!
“I was shocked and in disbelief but oh so happy,” Torre remembers. She was with her family in Denver when she got the news, and immediately told her Mom and sister. They decided to nickname the baby ‘Angelfish,’ an idea that’d come to Torre’s Mom in a dream she’d had about her daughter being pregnant a few years prior. By the time they made their pregnancy announcement on social media at 12 weeks, most of Torre’s close friends already knew.
“The room felt like it was shrinking.”
Three days after making that announcement, Torre and Oshin were beaming, expectant parents at a doctor’s appointment. Their sonographer had just taken an ultrasound, and they were taking pictures of it and sending it to their friends along with recordings of their baby’s heartbeat when the doctor entered the room and began: “Unfortunately…”
“My heart started pounding, I could barely hear what she was saying,” Torre recalls. “Something about the nuchal translucency being the wrong measurement. The room felt like it was shrinking. I tried to keep breathing. Oshin gripped my hand.”
The doctor explained there was a good chance the baby had chromosomal issues, and they could wait it out or do additional testing. They opted for a blood test and a chorionic villus sampling (CVS) biopsy, a prenatal test that takes a tissue sample from the tissue that will become the placenta.
Trisomy 18, or Edwards Syndrome, occurs in around 1 out of every 2,500 pregnancies and is caused by an error that happens during sperm or egg formation. Abnormal chromosome segregation (division of DNA) during formation of sperm or egg leads to a sperm or egg with two copies of chromosome 18 instead of one, thus creating an embryo with three copies of that chromosome. It’s a random and unpredictable event that a parent can’t cause or control, but chromosomal abnormalities are more likely to occur in parents of advanced age.
95% of trisomy 18 fetuses don’t survive full term. Genetically abnormal pregnancies typically end in early miscarriage, and of those that are diagnosed later in pregnancy in utero — typically around 12 weeks — 85% will not survive and instead will lead to a later miscarriage, intrauterine demise, or a stillborn birth. Of those who make it to delivery, only 50% survive two weeks, and under 5-10% survive past their first year.
But living with trisomy 18 isn’t easy, as it causes severe abnormalities in nearly every organ system. Children born with trisomy 18 generally struggle to breathe or eat and typically present with severe heart, gastrointestinal, and neurological defects, as well as significant developmental delays.
Rarely, doctors may offer potentially life-extending treatments like cardiac surgery to trisomy 18 babies, but infants with trisomy 18 are less likely than other babies to survive these surgeries. Because of the degree of lethality, most doctors recommend no intensive intervention and only supportive comfort care for infants born with trisomy 18.
After consulting with their medical team, Torre and Oshin chose to terminate the pregnancy. “As gut wrenching as it was, we felt that the least suffering for our Angelfish, Oshin, and me would come from saying goodbye,” she remembers.
After waiting a week due to pandemic staffing shortages, Torre had a fully sedated dilation and evacuation (D&E) at 15 weeks. “I woke up feeling deeply changed, to my core,” Torre says. “This type of grief is so intangible and crazy-making.” She felt blessed to have such a supportive partner and community. Her doctor provided resources, she saw a counselor, and her mother flew out to help her in the immediate aftermath.
When Your Only Option Is No Option At All
Choosing to terminate a planned pregnancy due to a life-limiting fetal diagnosis isn’t easy, especially for queer families or others struggling with infertility who have put significant financial resources and time into the process. But following the overturning of Roe v. Wade, termination won’t be an option at all for many parents and may impact whether parents in those states even try to conceive at all.
While the conversation around abortion rights tends to focus on unwanted pregnancies and those that pose a threat to the mother’s physical health, life-limiting diagnoses are a less-discussed reason a parent may require abortion care — and may need to do so later in their pregnancy.
Even before the Supreme Court’s devastating decision in June of 2022, it was already difficult-to-impossible for many people to terminate pregnancies due to “incompatible with life” prognoses for the fetus — it’s expensive, rarely covered by insurance, and already required travel and jumping through multiple hoops for those living in areas with heavily restricted abortions. In some states, doctors are prohibited from informing their patients that termination is an option, leaving parents to simply wait for what will likely be a miscarriage or stillbirth, while others will do their own research and elect to travel out-of-state to receive an abortion.
“It’s traumatic enough to have to end your baby’s life,” writes Kelcey of her trisomy 18 baby on Shout Your Abortion. “I still felt guilt and shame for the choice that I made. Having to go out of state and stay in a strange place, having so little support and the stigma attached made it so much worse.”
“Carrying a pregnancy for weeks knowing it’s not viable and needs to be terminated is brutal.”
Confirming a life-limiting fetal diagnosis — defined as “lethal fetal conditions as well as others for which there is little to no prospect of long-term ex utero survival without severe morbidity or extremely poor quality of life, and for which there is no cure,” which includes a multitude of cardiac defects as well as trisomy 18 and trisomy 13 (Patau Syndrome) — can take time.
The first diagnostic tests are available at 10-13 weeks, and confirmatory tests and results can take a few more. The worst case scenario is one in which a parent lacks insurance coverage for genetic testing and can’t afford the out-of-pocket fee and therefore doesn’t get a diagnosis until their 20-week ultrasound — but any scenario will put many parents in a terrifying time crunch, depending on their home state’s specific restrictions. Abortion providers in states like New Mexico, on the border with Texas, are already seeing incredibly long wait times for appointments, if a parent is able to get an appointment at all.
“Abortions are safer the earlier they happen in a pregnancy,” Dr. Elizabeth Rubin, a board-certified OB/GYN in Oregon who was one of Torre’s doctors, explained to me. “So what they’re doing is taking someone who already has a heartbreaking diagnosis, already is going through hell, and slapping an extra dose of unsafe onto it — adding unnecessary time pressure, schedule/travel stress, shaming and morbidity to a safe procedure — and adding to their recovery time. And honestly, really f*cking with their mental health.”
Another hopeful mother on SYA shares a story where, despite living in California; due to limited options from her local Catholic-controlled healthcare system and a totally-booked Planned Parenthood, wasn’t able to terminate her trisomy 18 baby until just shy of 22 weeks, after a friend of a friend called in a favor to the dean of her local medical school. “Carrying a pregnancy for weeks knowing it’s not viable and needs to be terminated is brutal,” she writes. “In those weeks I had no choice, I didn’t have the healthcare I needed.”
If forced to endure an excessive wait time or unable to abort at all, parents will likely miscarry. “It sucks to get the option of a D+E under controlled circumstances taken away from you,” Dr. Rubin explained, “and instead you have a miscarriage at home in your bathroom and then have to go to the hospital and have a D+C for the placenta. Like, that sucks! And it doesn’t have to be that way! That can be predicted and avoided.”
“Patients deserve the chance to know their options.”
When such a condition is diagnosed, doctors are advised to engage in Perinatal Palliative Consultation, a care strategy that focuses on “ameliorating suffering and honoring patient values,” presenting options including either terminating the pregnancy or continuing with it and then developing a post-birth care plan where one must choose priorities such as life prolongation or comfort.
“One of the most important parts of medicine, especially in gynecology, is shared decision-making,” Dr. Rubin told me. “Patients deserve the chance to know their options and think them through — that’s actually part of the grieving process.”
“I’ve seen families who have said, I love my child and want to do everything I can to help her live,” doctor Thomas Collins told Stanford Medicine, “and other, similar families who love their kids just as much who have said ‘In our family that is not living; it’s torture.’”
“We could not protect our daughter from trisomy 18, but we could shield her from any pain or agony that would come with it,” wrote Allison Chang, a then-medical student at Harvard, in an essay about her trisomy 18 experience. Chang recalled her relatively humane, while still traumatizing, experience terminating her pregnancy in Massachusetts, compared to what her friend endured in Missouri, which included a hefty price tag and being “vaguely awake” during the procedure.
Different Choices for Different Parents
For “pro-life” parents, the path forward is clear-cut in a different direction. “We decided that if our son’s death was impending, we would not be the one to set that date,” writes the founder of Abel Speaks, a non-profit providing support for parents who’ve chosen to carry a child with a life-limiting diagnosis, in a video about the organization. “While losing Abel was tragic, the real tragedy would’ve been if we’d kept ourselves from truly loving Abel during the time when we did have him.”
Organizations and Instagram accounts like Abel Speaks emphasize that God has a plan for every life and that life doesn’t need to be long to have value. Their social media feeds solicit prayers for the passing of tiny humans who lived briefly and for pregnant couples (somehow exclusively photographed in grassy meadows) to have safe and smooth deliveries and a chance to meet their baby alive. They’re confident not only in God’s plan but in the existence of heaven and God’s readiness to accept and cherish their infant after its imminent passing. Many want the chance to Baptize their baby before the end of its life.
Abel Speaks is a window into a culture with very different values than my own and a religion very different from my own (I’m Jewish). Still, I can understand their perspective and appreciate their right to make decisions in accordance with their values. I’d even say that reading their stories did open my mind to another way of approaching a diagnosis like this, although it wouldn’t change the decision I’d make in their shoes, and I don’t think their religious or cultural beliefs should impact what choices are available to me or other parents with life-limiting fetal diagnosis.
That said, it’s not only religious and anti-choice parents who choose to keep a baby with a life-limiting diagnosis; some parents may choose to continue the pregnancy for other reasons, like that they feel they’ll have more closure being able to hold their baby than they would after a D&E. That, too, should be a choice, Dr. Rubin echoed: “Even for patients who decide they want to carry the pregnancy for as long as it lasts, or deliver, knowing that a doctor thinks an abortion is a reasonable alternative is important,” Dr. Rubin told me. “It also helps them to understand the gravity of the disease and their blamelessness, that this is not their fault.”
In this way, the life-limiting diagnosis debate illuminates precisely why choice is so important: Different parents have different values, priorities, and circumstances that lead them to make different decisions.
Pregnant people who don’t need to work may have more room in their lives for a pregnancy with such a difficult prognosis than those who need to be more pragmatic about their time off. People over 40 trying for their first child may know that termination is actually the option more likely to enable them to have a healthy baby, whereas a younger pregnant person might not feel that urgency. Parents who’ve already endured the trauma of a stillbirth may be more inclined to do what they can to prevent another.
The “best case scenario” for a child with trisomy 18 — living past that first year or longer, as famously has been true for Rick Santorum’s daughter Bella — is often still untenable for parents who, in a country starved of social services and health care, don’t have the time, financial resources, or health insurance to support a child who requires full-time care, or who already have children with special needs.
Instagram accounts like TFMR (terminating for medical reasons) Mamas offer support and visibility to parents who’ve had to terminate for a medical reason, who often feel ostracized from spaces for grieving a baby loss. This May, they held the first ever TFMR Awareness Day. Just over a month later, they were, posting in response to the Roe v. Wade overturning: “Having to navigate unnecessary barriers to the essential care that we need at this time creates so much extra distress on top of the unbearable heartbreak that TFMR parents are already trying to cope with… You don’t deserve this, our future TFMR parents don’t deserve this, I’m so sorry this is happening in 2022!”
“Since Roe v Wade was overturned I have been cycling through my own experience and just can’t fathom what it would have been like if, on top of our absolutely heart-crushing situation, I then had to worry about legalities and having to travel to have my procedure done,” Torre says. “I am really lucky to be living in a state where my right to an abortion is protected. Going back into trying again is already nerve-wracking, let alone having to worry about what I would do, or be allowed to do, if something goes wrong in future pregnancies.”
For patients pursuing fertility in states where abortion isn’t available, they will have to make a plan ahead of time for the possibility of a life-limiting diagnosis. This could mean paying out-of-pocket for a Cell-Free DNA screening earlier in pregnancy or even electing (the much more expensive option of) IVF rather than IUI because preimplantation genetic testing can examine the embryos prior to transfer for a range of genetic problems.
“These laws weren’t written by doctors, so they’re not written in ways that actually reflect medicine,” Dr. Rubin told me. “No one’s saying we could list the situations in which, say, a neurosurgeon could operate. Whomst amongst us could say we understand neurosurgery well enough to write legislation that determines when you can operate on a spine or a brain tumor? But because this involves pregnancy, they somehow think this should be something that everybody gets to weigh in on? And that lawmakers understand, even though they’re not doctors? There’s nothing I can think of in medicine quite like this.”