Ashley Lefebvre hugs her unborn daughter's urn each night. Sarah Halsey treasures the tiny hat worn by her baby who lived just 38 minutes. Abi Frazier moved away from her home with a furnished nursery.
All ended wanted pregnancies because of grave fetal medical problems.
It's a side of abortion seldom discussed in national debates — the termination of pregnancies because of fetal anomalies or other often-fatal medical problems. These terminations often happen in the second trimester, when women have already picked out names, bought baby clothes and felt kicking in their wombs. They're far different from the most common abortions, performed earlier in pregnancies.
Women say these terminations for medical reasons don't feel like a choice — instead they are forced upon them by the condition of the fetus they carry. And the constant drumbeat of new abortion bans, rulings and news since the Supreme Court overturned Roe v. Wade has reopened raw wounds. Such abortions were already shrouded in secrecy and guilt, the women say. They fear the path will be even tougher for those who follow.
There are no recent statistics on the frequency of terminations for fetal anomalies — including genetic or chromosomal abnormalities — in the U.S., but experts say it's a small percentage of total procedures. They typically occur later than the 93% of abortions performed at or before 13 weeks of pregnancy.
In the wake of the high court's decision, a growing number of women in this smaller group are coming together to support each other and share their voices. They say more people will face the same hurdles they did — traveling long distances, rushing agonizing decisions, navigating a maze of changing abortion restrictions — with an even narrower window for care.
The vast majority of states ban abortion at some point in pregnancy, and roughly a dozen have exceptions for fetal anomalies, most just for fatal medical problems. Even in states with exceptions, providers may be reluctant to perform terminations for medical reasons, and cases can fall into gray areas.
Gray seeps across the spectrum of abortion, say the women who've experienced these procedures.
Here are some of their stories.
A "Fatal Defect"
When Abi Frazier was pregnant last year, she and her husband created a nursery — Cadi's room, with a hand-me-down crib, toys and clothes. But Cadi never came home.
At Frazier's first ultrasound appointment, nothing seemed amiss. She saw movement and heard a heartbeat. So the couple shared their pregnancy news with family.
"Surprise! We're having a baby!" they told them, taking off sweaters to reveal shirts that said "mama to be" and "rad dad."
A screening test for chromosomal abnormalities came back normal and indicated they'd have a girl. But then, at just over 19 weeks, a doctor told them about a severe problem involving the neural tube from which the brain and spinal cord form.
Frazier will never forget his words: "I'm so sorry. She has a fatal defect."
Her options were to terminate the pregnancy, or carry the baby and expect a stillbirth.
"I was weighing the choice, which really didn't feel like a choice, because what I wanted was my baby," said Frazier, now 34.
The decision to terminate meant contending with time limits and regulations. The doctor at a nearby Oklahoma clinic would not provide the procedure past 17 weeks. Frazier traveled three hours to a Kansas clinic with a cutoff of 22 weeks.
Under state law, the couple had to wait 24 hours for the procedure after their first clinic visit. They got a hotel, and Frazier cried nonstop. At the clinic, staff were compassionate, she said. The people gathered outside were not. Her husband couldn't come inside, so he had to listen to protesters on a bullhorn. They parked a van with graphic images in front of the exit.
The next year, when the Supreme Court's abortion ruling came down, the couple had moved to a new home. There, rainbows — symbolizing babies born after loss — cover a crib sheet, lamp, picture frames and walls in a new nursery. Their daughter, Ava, was born in March.
In the couple's bedroom is a tiny urn filled with Cadi's ashes, next to an ultrasound picture. "She's always gonna be part of our family," Frazier said.
She said abortion opponents don't understand the medical nuances behind decisions like hers.
"The choice that I made was out of compassion for my daughter," she said.
Oklahoma now prohibits abortion completely, with no exception for fetal anomalies.
Spina Bifida, and Likely a Lifetime of Pain
Just before Christmas, Faye seemed to be on the cusp of a new phase of life. The day before she and her husband moved into their first house, she discovered she was pregnant with their first child.
They learned it was a girl and named her Lynne.
But at 20 weeks, an ultrasound found that the fetus had spina bifida, a condition in which an area of the spinal column doesn't form properly, and a complex congenital malformation of the brain.
The Richmond, Virginia, woman considered having surgery on her fetus at a North Carolina hospital. It wasn't a cure, though it might have eliminated the need for a shunt to help drain fluid from the baby's brain.
But Faye — who spoke with AP on condition of using only her middle name, out of concerns over online backlash — said it "started to feel selfish to bring her into the world."
Lynne might have lived, Faye said, but she likely would have faced a lifetime of pain. Experts say when a fetal diagnosis isn't uniformly fatal, the decision to abort can be especially thorny and more ethically gray.
The two-part termination took place at 23 weeks of pregnancy — and it began the day after she learned that the Supreme Court's draft opinion was leaked. Shortly after the official ruling, Faye, now 30, suffered nightmares and memory loss and was diagnosed with post-traumatic stress disorder.
Today, Faye's sorrow is mixed with hope. She is pregnant again.
"It Was Really Important That I Gave Birth to Her"
Sarah Halsey's fifth baby lived for only 38 minutes, dying in her hands.
She ended her pregnancy last year after scans showed the fetus had a brain abnormality and other signs of the genetic disorder trisomy 13. She asked the doctor if, in her baby's case, it was "compatible with life."
He paused, then replied: "I'm so sorry."
Halsey chose an induction abortion, which uses medications to start labor in the second or third trimesters. The intent is to end the pregnancy, and it is considered an abortion. But infrequently it can result in a brief, unintended live birth. It's less familiar than the surgical dilation and evacuation procedure more commonly used in the second trimester. But some facing fetal anomalies want to see and hold their babies.
That was true for Halsey — a labor and delivery nurse in Michigan. Though she knew she wouldn't go home with a baby, she said, "it was really important that I gave birth to her."
When labor ended, she held the 10-inch, 10-ounce infant, named Willow Rebecca after her grandmother and mother.
"We kissed her," Halsey said. "We told her how much we loved her."
Three weeks later, Halsey, 34, returned to work. It was rough; her first patient had the same due date she would have had. But she eventually felt that her loss allowed her to offer more compassionate care.
Today, Halsey finds support in two online groups for parents who terminated pregnancies for similar reasons. She and her family recently marked Willow Rebecca's birthday by planting a willow tree in the backyard.
"We loved her so, so much that we did not want her to fight and suffer," Halsey said. "Ending my pregnancy felt like the most motherly thing I have ever done."
Acrania, a Rare and Fatal Condition
Terminations for women who learn of fetal anomalies have only grown more complicated since the Supreme Court's June ruling — as Nancy Davis realized the next month, when she learned that her unborn baby was missing a skull.
The Baton Rouge, Louisiana, woman was 10 weeks pregnant. She said she was told the fetus had a rare, fatal condition called acrania and would probably survive only a short time — several minutes to a week — if brought to term.
Doctors advised an abortion, but said they couldn't perform it. Louisiana's post-Roe trigger law banned all abortions except when there is substantial risk of death or impairment to the woman or if the pregnancy is considered "medically futile." Doctors performing illegal abortions can face up to 15 years in prison.
"Basically, they said I had to carry my baby to bury my baby," Davis, 36, said at a news conference in late August.
A group of legislators released a statement saying the hospital "grossly misinterpreted" the abortion exceptions. Davis and her attorneys blamed the vagueness of the law, not the doctors. Acrania wasn't on a list of conditions considered medically futile, but the document also notes exceptions for other lethal anomalies certified by two physicians. A state health department spokeswoman said a finalized list would specify acrania.
At the news conference, Davis demanded that Democratic Gov. John Bel Edwards and the legislature call a special session to clarify state abortion restrictions. One of her lawyers, prominent civil rights attorney Ben Crump, said, "There is nothing right about this situation, and the lawmakers have the power to do something about it."
At 15 weeks pregnant, Davis planned to go out of state. "Each day I continue this pregnancy, I grow more attached to the baby," she said.
Not all women have that option. Some can't afford long-distance travel. Jennifer Hoskovec, a genetic counselor in Texas, said it's devastating for women to make such a difficult, complex decision only to realize "it's not really even a decision they had in the first place."
Davis said no woman should ever have to endure what she's been through: "It's a mental fight, it truly is,"
First Grief, Then Activism
For Jill Atstupenas, the end of the constitutional right to abortion was emotional — and she turned it into action.
In September 2020, she learned she was pregnant after several rounds of in vitro fertilization. But she and her husband, of central Massachusetts, ultimately learned their unborn baby had brain malformations.
"I'll never forget what the doctor said: 'Bring her into the world and all three of you could be in pain," Atstupenas said, but by ending the pregnancy, "the two of you will know pain for the rest of your lives, but your daughter would only ever know love.' "
Atstupenas, 36, had an induction abortion in February 2021, between 23 and 24 weeks. The baby lived a few moments. She and her husband stayed in the hospital for two days, singing and reading to the girl they named Hadley Maeve, even though she was gone.
More than a year later, Atstupenas sat at her computer for hours reading the high court's abortion decision. She was terrified for families in states with trigger laws.
She started on social media, with a Facebook post sharing her story. She included a photo of her and her husband in the hospital with Hadley.
She also did a blog post for a support group "TFMR Mamas" — terminations for medical reasons. She went on a podcast. She attended abortion-rights rallies in Boston with her husband.
She wrote to senators, telling them that people who terminate in these cases aren't "waking up and saying 'the heck with it, I don't want this pregnancy anymore."
If she can sway any legislators, it's worth her time. "Maybe they're just not as informed as they should be," she said. "I just want to help people understand."
A Supreme Court Decision That "Just Felt Very Personal"
Ashley Lefebvre was just weeks out from her termination when the Supreme Court's ruling came down. She was on a break from work, taking a walk and listening to a meditation on baby loss. A friend texted her: "I just want you to know that you've done nothing wrong."
Lefebvre stopped, found a tree and sat down. She pulled up NPR on her phone to confirm the news and started crying.
The 30-year-old Syracuse, New York, woman had her termination at 17.5 weeks in mid-May, shortly after the draft opinion leaked. The fetus, whom she and her husband named Rowan, had Down syndrome, blocked bowels, a failing heart and other issues.
One of her medical appointments was a day after the leak, and she saw the news everywhere. "It just felt very personal," she said. "Everything that I was reading, I was putting myself in that article."
The abortion debate continues to swirl around her. With every new restriction passed, she feels hopeless. She hears the same from others in a peer support group. No one knows how to turn back the clock.
Every day, Lefebvre holds Rowan's urn close to her chest to say goodnight. She imagines the baby can feel the warmth of her body and hear her heartbeat again.
But she's reminded often that reality is much colder. Weeks after her procedure, a crib her dad had ordered arrived at her home.
She put it in the basement with the rest of the baby things that she no longer needs.
Associated Press reporters Rebecca Santana in New Orleans and Sara Cline in Baton Rouge contributed to this report.
The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Department of Science Education. The AP is solely responsible for all content.
Lead image: Sue Ogrocki/AP
Associated Press © 2022
Cite this: They Ended Wanted Pregnancies.Post-Roe, They Face New Pain. - Medscape - Sep 19, 2022.