The first sign Victoria Shaheen’s 12-week pregnancy wouldn’t end the way she hoped was the look on the ultrasound technician’s face.
The tech was silent as she tapped out measurements in the dim room at Ochsner Baptist in New Orleans, but her face betrayed her concern. Shaheen knew that look. This was her fourth pregnancy. She and her husband were still without a child.
The doctor came in and explained that a fluid sac around the baby’s skull was too thick. Where an abdomen should have formed, there was a gaping hole. And organs were forming outside the body.
A tiny piece of tissue from her placenta drawn out by a large needle confirmed Trisomy 18, a severe genetic disorder that results in stillbirth about three-fourths of the time. For those that survive, life expectancy is brutally brief; 90 to 95% do not live past one year.
Knowing that, continuing the pregnancy was agony for Shaheen, then 43, who couldn’t fathom putting her child through that. She asked for a dilation and curettage, a procedure that would remove the fetus and tissue. She’d had the procedure before in Boston, where she used to live.
“No, we can’t do that at this hospital,” she remembers the doctor saying. Instead, the doctor scribbled two numbers on a piece of paper. One was the abortion clinic in New Orleans. The other was the number of a doctor who ran a private office out of a house Uptown.
Under Louisiana’s current “medical futility” law, pregnant women carrying a fetus with Trisomy 18 would be eligible for an exception to Louisiana’s near-total abortion ban. But as Shaheen found out when she was diagnosed in 2018, Louisiana hospitals typically sent pregnant women with an “incompatible with life” diagnosis to abortion clinics long before Dobbs v. Jackson Women’s Health triggered an abortion ban in the state.
Without clinics to handle “medically futile” abortions, women are faced with uncertain access to abortion for medical reasons as providers and hospitals weigh legal risks and skill against patient options.
‘Something I can’t really handle here’
Hope Medical Center in Shreveport, one of the three abortion clinics that operated in Louisiana before they were shut down Aug. 1, was often on the receiving end of those cases.
“These were even more difficult cases,” administrator Kathaleen Pittman said. “Most of the times, I found in those situations the pregnancies were very much wanted.”
It was not uncommon for physicians to call Pittman on behalf of patients with fetal anomalies. Some didn’t have the training to handle it themselves. But more often it was because the hospital, particularly if it had a religious affiliation, did not allow it.
“Their opening salvo would be, ‘This is something I can’t really handle here,’” Pittman recalled.
The majority were related to some sort of trisomy, which is when a specific gene has three copies of a chromosome instead of two. Sometimes it was also because the health of the woman was at risk due to cancer, deep-vein thrombosis or a history of hemorrhage at birth.
Without clinics to shuttle patients to, many will likely be sent even farther away, if they can afford to travel, take time off work and arrange child care, said Pittman. There will also be a dwindling number of doctors who know how to provide abortions later in pregnancy. Depending on the timing of their first ultrasound, many women don’t find out about anomalies until the anatomy scan at 20 weeks. The Shreveport clinic provided training for the majority of Louisiana’s residency programs.
“Not all hospitals will have physicians that are ready and willing to take up the care for these patients,” Pittman said. “They’ve not had sufficient training because they haven’t had to.”
Law allows for exceptions
The reasons for referring patients from hospitals to clinics were not always that the hospital or doctor didn’t want to do it.
“Patients going to particular health systems even pre-Dobbs may have heard that they couldn’t receive a type of abortion care at that institution for a variety of reasons,” said , said Dr. Pooja Mehta, an OB-GYN and former medical director of the Louisiana Perinatal Quality Collaborative who now works in Boston.
Louisiana state employees, for example, were restricted from providing abortions in some situations even before Dobbs, said Mehta. Medicaid insurance, which is used for the majority of births in Louisiana, covered abortion only for life endangerment, rape or incest.
Clinics charged a fraction of what it would cost to end a medically futile pregnancy at a hospital.
Private hospitals were unwilling to consistently provide the service for fetal anomalies, particularly in the second trimester. That may not change with a law that spells out a number of conditions for which abortion is allowed. Doctors who haven’t ever provided later-stage abortions likely won’t start because of a list of conditions.
“The provider at that point may feel like they’re no longer competent to provide the service and may not receive support to achieve competency,” said Mehta.
Representatives from Ochsner, LCMC Health, Woman’s Hospital, Franciscan Missionaries of Our Lady Health System and HCA Healthcare did not answer questions about how many “medically futile” abortions they have performed since Dobbs or what their abortion policies were prior to the ban.
“The vast majority of care provided by Ochsner Health remains unaffected and within legal parameters under both pre- and post-Dobbs law,” said Dr. Robert Hart, executive vice president and chief medical officer, in a prepared statement. “Ochsner has never performed non-medically indicated termination of pregnancy. In accordance with state and federal law, we will continue to provide lifesaving care for patients experiencing miscarriages and ectopic pregnancies and appropriately address medically futile pregnancies and situations where the mother’s life and health are at stake.”
Doctors said being able to terminate a pregnancy for medical reasons might depend on who you know or where you live.
“Certainly at plenty of other hospitals, I don’t think that there are a lot of doctors willing to stick their necks out,” said a New Orleans-area OB-GYN who did not want to be identified because they were not authorized to speak by their employer. “You can tie yourself up in paperwork all weekend and call the lawyers and all this stuff.”
Termination of pregnancies performed in Louisiana under the allowed exceptions — because the fetus is medically futile or the mother’s life is in danger — must be reported to the Louisiana Department of Health. Since Aug. 1, not a single abortion has been recorded by the LDH.
A ‘well-known secret’
When Shaheen called the New Orleans abortion clinic back in 2018, they said she would need to pay for counseling ahead of time. She tried to explain that she didn’t need counseling or another ultrasound, but they said it was required. She hung up the phone and screamed.
“Every minute that goes by carrying this pregnancy was painful,” said Shaheen, who was imagining the pain her baby would be in if it survived until birth. “You never want someone that you care for to go through that.”
When she called the other number, the doctor told her she wouldn’t be able to provide anesthesia during the procedure because it wasn’t in a hospital, but she could take a seaweed suppository to help dilate the cervix. She flew to Boston the next day, where a team at Brigham and Women’s Hospital gave her the procedure.
At the time, the idea of going without anesthesia for a surgical procedure and not having a hospital team on call scared her.
“Looking back, I guess in Louisiana we would be lucky to have that option now,” said Shaheen. She recently moved back to the Northeast with her husband and 2-year-old.
That Uptown doctor was the same one who provided the majority of abortions at New Orleans’ last remaining clinic until August. She provided terminations for many medical anomalies over the years.
“I was a well-known secret,” said the doctor, 82, who did not want to use her name for safety reasons. “As long as there was an abortion clinic, (hospitals) could step away and say, ‘Oh, we don’t want to do it.’”
That unwillingness hasn’t changed with the medical futility law, said the doctor, pointing to Nancy Davis, a Baton Rouge woman who was denied an abortion by Woman’s Hospital for a fetus without a skull.
The anti-abortion group Louisiana Right to Life said in public comments submitted during a recent hearing that it does not support medical futility exceptions, particularly Trisomy 18 and 13. The group wrote that the “best way forward that supports the mother and respects the life of the living baby is to provide support for families and perinatal palliative care from the moment of the diagnosis through the duration of the child’s natural life.”
Fear of being scrutinized by the Attorney General’s Office, lawmakers and anti-abortion groups has made it easier for healthcare providers to keep turning women away, or presenting them with other options, such as induction or waiting for a natural miscarriage later in the pregnancy, which comes with its own risks.
“I could see being deathly afraid that if I do this, they’re going to definitely come after me,” said the 82-year-old doctor, who retired when the clinics closed in Louisiana. “They just say no. And so women lose.”