The women who made painful choices challenge Texas’s severe abortion ban

After Danielle Mathisen and her husband realized they would be having a baby girl, they started calling her “Mini”. “We figured she would be a mini-me,” Mathisen said.

Related: Texas women give harrowing testimony on impact of extreme abortion ban

For months, Mathisen’s pregnancy appeared normal. Genetic testing went well. Her parents were thrilled – this would be the first grandchild in the family.

But in September 2021, two weeks after Texas banned abortion past six weeks of pregnancy, Mathisen went in for her 18-week anatomy scan. And Mathisen, then a 25-year-old fourth-year medical student, quickly realized that something was terribly wrong.

Doctors soon confirmed Mathisen’s fears: the fetus had only one kidney, severe scoliosis, a partially formed umbilical cord and improperly positioned hands and feet. The fetus also had an underdeveloped brain.

Mathisen’s pregnancy was at risk of ending before she ever gave birth. If Mathisen did give birth, her baby would probably die from respiratory failure shortly afterward. “She doesn’t have enough brain to tell her lungs how to breathe,” Mathisen said.

If she continued the pregnancy, Mathisen’s health could be at risk, too.

Soon after her diagnosis, Mathisen started calling abortion clinics in Colorado. They were booked solid. Her mother ultimately found her an appointment at a clinic in New Mexico, which Mathisen said was holding appointments open for Texas women. The appointment was for the very next day.

Afterward, when she returned to Texas, Mathisen and her husband told everybody that she had had a miscarriage. “Continuing a pregnancy that was not going to end up with a baby in the crib, but a baby in the casket – it did not make sense for me, personally,” she said.

Now, though, Mathisen has gone public with her story. She is one of 20 Texas women who have sued their home state, arguing that they were denied medically necessary abortions. While Texas bans almost all abortions, the procedure, according to state law, should be allowed in medical emergencies. But abortion rights advocates and doctors in the state say that the exceptions in the law are so vague that doctors can’t decipher them. Instead, they are forced to watch until patients get sick enough to intervene.

The Texas supreme court will hear arguments in the case on Tuesday. Rather than demolishing Texas’s abortion ban outright, the women – as well as two doctors who have also joined the case – are hoping that the court will agree to clarify the state’s abortion exceptions.

A judge in Austin, Texas, heard arguments in the case in July, in a hearing believed to mark the first time that women testified in court about their experiences with abortion since the US supreme court overturned Roe v Wade last year.

Amanda Zurawski, the lead plaintiff in the case, talked about learning that her cervix had dilated too early in her pregnancy. She had no chance of giving birth to a healthy baby – but she was also unable to get an abortion in Texas because doctors could still detect a fetal heartbeat, she said. Zurawski ultimately developed sepsis and spent three days in the ICU.

Samantha Casiano testified about discovering that her fetus had been diagnosed with anencephaly, a condition where parts of a fetus’s skull and brain do not develop properly. But she did not have the money to travel out of state for an abortion, so she gave birth to a baby daughter who struggled for air and died just four hours after birth. Casiano was so overcome on the stand that, in the middle of testifying, she threw up.

A few weeks after the women’s testimony, in August, the judge issued a preliminary injunction, ordering that doctors be allowed to perform abortions in cases where patients have an “emergent medical condition” that threatens their life or health.

But Texas immediately appealed that ruling, which froze the preliminary injunction. In court filings, attorneys for Texas argued that doctors, not the state, are responsible for what happened to the women in the lawsuit.

“These independent decisions by third-party medical providers, right or wrong, break any purported chain of causation” between the abortion ban and any medical emergency, they alleged.

In any case, the attorneys argued, these women don’t have the legal right to sue, because the pregnancies at issue in the lawsuit are in the past and they are no longer at risk of imminent damage from Texas’s abortion laws. Multiple women involved in the lawsuit, including Mathisen, became pregnant again.

Nick Kabat, a staff attorney with the Center for Reproductive Rights, which is representing the women in the Texas case, said that the Texas state supreme court –made up exclusively of Republicans – could buy that argument. Kabat is preparing for the possibility that the justices rule that, in order to sue, advocates need a plaintiff who is actively in the midst of a medical emergency.

“They could say that what you need is a woman who is in an emergency in desperate need of an abortion,” Kabat said. “So basically, someone who has amniotic fluid dripping down their leg or they’re actively bleeding, where they have an IV connected to them that’s really keeping them alive. And you know what, if they say that, then we’ll find that patient, because the patient exists in Texas, unfortunately.”

At the end of August, the Texas government enacted new legislation to, in theory, allow doctors to perform abortions in cases of ectopic pregnancies – a life-threatening condition – or when a pregnant person’s water breaks too early for the pregnancy to be viable.

But critics say that those exceptions don’t cover the vast array of nuanced issues that can arise in pregnancy. In addition, rather than completely shielding a doctor from prosecution, the new exceptions offer doctors a defense in court only after they have been charged – a legal mechanism known as an “affirmative defense”.

“Whatever fix the Texas government thinks it has adopted, it hasn’t solved this issue,” Kabat said. “That law has not changed the way doctors are practicing.”

Related: Abortion providers on two years of Texas ban: ‘We’re living in a devastating reality’

Mathisen ended up moving to Hawaii for her OB-GYN residency, rather than remain in Texas, where she had once hoped to work.

“I’m currently pregnant with another baby girl, and I would love for her to live across the street from her grandma,” Mathisen said. “Right now, I can’t do that, because I don’t think I could go back to Texas and practice medicine if I cannot do abortions.”

Since the Texas lawsuit was first filed in March, the Center for Reproductive Rights has filed similar lawsuits in Idaho and Tennessee. The Center is also representing a woman who has filed a federal complaint against a hospital in Oklahoma that, she says, refused to give her an abortion for a dangerous and nonviable pregnancy. Instead, staffers at the hospital allegedly told the woman to wait in the hospital parking lot until she was “crashing”.

If the Texas state supreme court rules in favor of women like Mathisen, it will not set a legal precedent for the lawsuits in other states. But Kabat believes it would help.

“These abortion medical exemptions are worded in very similar ways,” Kabat said. “A ruling in Texas in our favor would be powerfully persuasive to justices deciding similar cases in other states.”

Throughout her ordeal, Mathisen clung to one small source of comfort: in the ultrasound, Mathisen could see that Mini’s hands were curved into the shape of a heart.

“Like the heart that Taylor Swift makes,” Mathisen said. “The heart that she made with her hands, through all of my tears and sobbing – I was like, ‘She’s OK.’ It was just a sign that everything was going to be OK, even if we ended the pregnancy.”