Texas’ abortion fix bill won’t address doomed pregnancies

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For the first time since Texas banned nearly all abortions, Republican lawmakers are considering tweaking the language of the law to protect the lives of pregnant women.

But this much-lauded bipartisan effort will offer no reprieve for women carrying doomed pregnancies diagnosed with lethal fetal abnormalities.

At a House committee meeting this week, Austin resident Taylor Edwards tried to convey how it felt to carry a pregnancy with no chance of survival. She learned at 17 weeks that her much-wanted pregnancy was developing in such a way that her daughter’s “brain was coming out of the back of a hole in her skull,” Edwards said.

For years, abortions for a “severe and irreversible abnormality” were allowed at any point in pregnancy in Texas. But that exception was yanked away in 2021, when Texas started down the path of banning all abortions except those to save the life of the pregnant patient.

“Our so-called representatives instead prefer to force these women to carry to term a baby who would never survive outside the womb,” Edwards said, “and allow a mother and child to suffer agonies of a life that’s not meant to be lived for the sake of their own comfort.”

Almost three-quarters of Texas voters, and 63% of Republicans, believe abortion should be legal in cases where “there is a strong chance of a serious birth defect,” according to a Texas Politics Project poll.

But Republican lawmakers have shown no willingness to expand the abortion law to include these cases. Even this effort to clarify the existing exceptions required strict negotiations with anti-abortion groups to ensure there was no inadvertent widening of access.

At the hearing Monday, Fort Worth Democrat Rep. Nicole Collier said she was sympathetic to stories like Edwards, and wished there could be an exception for these cases.

“But the way we’re made up, the makeup of the body, this is what we have,” she said.

Rep. Jolanda Jones, a Houston Democrat, was more straightforward about the odds of expanding abortion access, for these or other cases.

“I bet people in hell want cold water,” she said. “But they don’t have it.”

‘Go get an exception’

Kaitlyn Kash’s first pregnancy was “textbook,” she said. So when the Austin-area got pregnant again in 2021, she expected a similarly standard journey. But at her 13-week anatomy scan, her doctor noticed that the fetus’ limbs were extremely underdeveloped.

“That’s not something you usually measure at that appointment,” she told The Texas Tribune. “That’s how severe it was, they could see it that early.”

A maternal-fetal medicine specialist diagnosed her baby with osteogenesis imperfecta, or brittle bones. Kash risked breaking the baby’s developing bones every time she leaned over, she said.

“The baby would obviously have a very rough delivery, and then if the baby survived, most likely in these cases that are so extreme, the rib cage will not develop large enough to support lung function,” she said. “The baby would suffocate after being born without extreme medical intervention.”

Lethal fetal abnormality is a term used to describe a range of diagnoses, conditions and malformations that can be diagnosed before birth that will, with reasonable certainty, result in a non-viable pregnancy or death shortly after birth. Congenital abnormalities affect 2 to 3% of pregnancies worldwide, although not all of those diagnoses are so severe as to be fatal.

Kash has worked in the maternal health field, so she knew she couldn’t get an abortion in Texas. But so many other people in her life assumed there would be a carve-out for cases like hers. Her father told her to “go get an exception,” and having to repeatedly explain why she didn’t qualify for this medical care in-state only exacerbated her grief.

One in four Texas women of reproductive age believe the law allows for abortions in cases of lethal fetal anomalies, a March 2024 survey found. Many don’t find out the nuances of the law until they need to call on it themselves.

Heightened risks

Lauren Hall wasn’t thinking about the state’s abortion laws when she got pregnant in 2022. But she got very familiar, very fast after learning that her fetus was developing without a skull. Her doctor told Hall that she would likely miscarry, deliver a stillborn, or her daughter, whom she’d named Amelia, would live mere hours.

“I knew the best case scenario was that I would miscarry, because otherwise I’d be carrying to full term just for my baby to die,” she told the Tribune. “But I was also worried about miscarrying, because we’ve seen now stories of women who start to miscarry and were left to go septic with no intervention, and even die. It was putting me at risk either way.”

Pregnancy is not a benign condition, especially in a state like Texas, where maternal mortality and morbidity is on the rise, said Dr. Leilah Zahedi-Spung, a maternal-fetal medicine specialist in Colorado. Pregnant women can develop preeclampsia, are at high risk of hemorrhage, and often must undergo physically intensive surgery to deliver.

These are risks many women are willing to take to have children, but, she said, “when we talk about lethal anomalies, that is a risk without any benefit.”

Some fetal anomalies increase the risk to the pregnant patient — trisomy 13, for example, increases the risk of preeclampsia, and since anencephalic fetuses can’t swallow, there is often a build-up of fluid that can lead to placental abruption and hemorrhage, medical experts told the Tribune.

If there is an extreme threat to the pregnant patient’s life, they may qualify for an abortion under the law. But there is no exception for mental distress, so when Hall felt herself crumbling under the grief of carrying this pregnancy to term, she got on an airplane and traveled to Washington state to have an abortion.

In late 2023, Kate Cox, a Dallas mother of two, tested the legal limits of these exceptions as they apply to lethal fetal anomalies. After receiving a diagnosis of full Trisomy 18, a lethal chromosomal anomaly, she sued for the right to terminate her pregnancy.

Her doctor attested that she needed the abortion to protect her health and future fertility, and a judge granted the abortion. Attorney General Ken Paxton appealed to the Texas Supreme Court and, in the meantime, threatened three Houston-area hospitals with fines and criminal charges if they allowed the abortion to take place at their facilities.

The Texas Supreme Court barred Cox from having an abortion, saying that “some difficulties in pregnancy … even serious ones, do not pose the heightened risks to the mother the exception encompasses.”

Cox traveled out of state to terminate her pregnancy.

Perinatal palliative care

Anti-abortion groups argue these diagnoses are not always a death sentence, and doctors are often too quick to offer abortion as an option.

“Abortion is going out of your way and causing the death of the child,” said John Seago, president of Texas Right to Life. “That is not a treatment for a disability. That is not a treatment for a mom. That’s unnecessary.”

Their solution is to better fund and raise awareness about perinatal palliative care, programs that support families as they navigate a life-limiting or lethal fetal diagnosis. Texas Right to Life has endorsed two bills that would require health care providers to offer patients information about these programs after they receive a lethal fetal diagnosis.

These programs offer families care coordination between medical teams, emotional and spiritual guidance, childbirth planning that takes into account the patient’s wishes around life-extending measures, and bereavement support.

Perinatal palliative care is a wonderful option for families that choose to continue a pregnancy despite a lethal fetal anomaly, said Dr. Justin Lappen, an Ohio maternal-fetal medicine specialist who chairs the Reproductive Health Advisory Group at the Society of Maternal Fetal Medicine.

But it’s not a substitute for abortion access for families that want to make the choice to terminate instead, he said.

“Sometimes another mechanism for compassionate care is to provide abortion care, rather than going the perinatal palliative care route,” he said. “For pregnant patients facing these really significant diagnoses, It’s critically important … to have that choice, and it shouldn’t be taken away.”

For now, at least, perinatal palliative care is the only path available to Texans with lethal fetal diagnoses who can’t leave the state. Lawmakers have made it extremely clear that there will be no effort to expand access in the push to clarify the existing exceptions.

Rep. Charlie Geren, the Fort Worth Republican who is carrying the clarifying bill in the House, said at the hearing that he wished they were adding an exception for lethal fetal anomalies.

“But that’s not what this bill is about,” he said.

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