To do it, she had to leave her home in eastern North Carolina and travel four hours to Richmond, Virginia.
It’s an outcome J didn’t expect for her first pregnancy. She and her husband were eager to become parents. They set up baby registries, started decorating the nursery and prepared to bring their baby home. J was so excited that she took her husband, her parents and in-laws to a boutique ultrasound facility one Saturday when she was nearly 16 weeks pregnant to see their growing baby girl.
During that ultrasound, the technician became quiet. Then came the devastating statement: “I'm really sorry, but I'm seeing multiple abnormalities.”
J, identified by her first initial to protect her privacy, said she was desperate for the baby in her belly — whom she’d been saying good morning and good night to every day — to be okay.
However, her OB-GYN, and later a maternal-fetal medicine specialist, confirmed a host of developmental issues. The baby had a cyst on the back of her neck that was bigger than her head, severe abdominal swelling, excess fluid around her left lung and club foot. She was also behind on all her fetal growth markers.
J had an abnormally low volume of amniotic fluid. This fluid plays a vital role in fetal growth and development and also helps with clear ultrasound imaging, so low fluid volume can make some of the visualization tricky. The doctors suspected that there were even more issues they couldn’t clearly see on the ultrasound.
Even J’s untrained eyes could tell so much was wrong.
The doctors couldn’t determine what was causing the developmental issues but were clear that the prognosis was poor — that she likely wouldn’t make it to term. J was a good candidate for termination, her doctor told her, though they said they would support her if she decided to continue the pregnancy.
North Carolina’s stricter abortion law, which took effect in July 2023, bans most abortions past 12 weeks in pregnancy. The law includes exceptions allowing some abortions later in pregnancy for rape and incest, medical emergencies and for “life-limiting” fetal anomalies.
But when it came to providing an abortion in the second trimester under the “life-limiting” fetal anomalies exception, J said her doctor was reluctant to sign off on an abortion without an official diagnosis, which was difficult due to the imaging limitations and inability to perform an amniocentesis, a prenatal test used to diagnose certain fetal problems, due to her low volume of fluid.
That hesitancy forced J across state lines.
“We were basically told that they were not hopeful for the pregnancy, but with the political landscape and not having a diagnosis, they were a bit more hesitant to put such a strong label on it,” she said. “It was made very clear to us that we were not going to make it to term — that even if we did continue the pregnancy, it was going to end up in a termination whether it was the baby was sick enough to qualify finally, or I was sick enough or she passed inside of me.”
If J waited, there was a chance she would later qualify for abortion care in North Carolina, but she didn’t want to risk extending her daughter’s suffering or sending her own health into crisis.
“That was something that I refused to do,” she said. “I'm not going to be a walking tomb.”
Days later, she traveled to VCU Medical Center in Richmond where a doctor performed J’s abortion when she was 17 weeks and 2 days pregnant. In Virgina, abortion is legal through the second trimester of pregnancy for any reason, and there is no waiting period — unlike North Carolina, which has a 72-hour waiting period after state-mandated counseling.
J and her husband were grateful for the out-of-state access, though she is still angry that she was pushed far from home for care by what she views as a political law that’s not rooted in the interest of her health. Navigating the state’s abortion law compounded the trauma of the “worst moment of her life,” she said.
“I had to spend my last night with my daughter inside of me in a crappy hotel in a city I didn't know,” J said.
Despite North Carolina’s abortion law passed by Republican lawmakers in 2023 allowing abortions during the first 24 weeks of pregnancy for “life-limiting” fetal anomalies, medical providers working with pregnant patients say that there are exceptions on paper, but in practice situations present with so much nuance and uncertainty that they can leave some patients behind. J’s experience of traveling out of state for an abortion, along with the experiences of other women and medical providers NC Health News spoke with, illustrate the complexities around navigating a law that dictates medical care that never fits in a box.
Granting exceptions
Republican state lawmakers touted the law with its inclusion of exception categories as “common sense,” but doctors say that the exceptions do not align with the complex gray areas of pregnancy care. While well-intentioned, they serve to delay care and call into question judgement, doctors repeatedly told NC Health News.
Additionally, North Carolina law requires that all abortions past 12 weeks under the exceptions be provided in hospitals, which means the state’s 14 abortion clinics are not options for these patients.
“Politicians thought they were crafting really thoughtful, well-meaning language, but it doesn't work out that way,” said Matt Zerden, an OB-GYN in the Triangle who serves as associate medical director at Planned Parenthood South Atlantic. “You can't create exemptions for the complexities of these conditions, and the roadmap for patients is just not understood.”
For abortions past 12 weeks due to fetal anomalies, the law states the diagnosis must be defined as a “life-limiting” disorder by current medical evidence and be “uniformly diagnosable” to qualify.
Doctors fill out paperwork and submit the forms to the state Department of Health and Human Services when granting an exception for fetal anomalies. It’s not a pre-approval process; rather it’s documentation based on a provider’s medical judgement that can be later subject to review.
The process and unknowns involved has a chilling effect on care, said Amy Bryant, an OB-GYN in the Triangle. Even providers following their best medical judgement can’t help but weigh the legal risk.
“I think there are a lot of providers who just feel extremely uncomfortable providing care that they would otherwise provide because they're just uncertain about whether something bad could happen to them, and that really changes a lot of the dynamics of how providers interact with patients and what they're willing to offer them,” Bryant said.
DHHS is mandated to compile an annual statistical report tracking abortion volumes. The first report released in December 2024 reflects the first six months under the stricter abortion law, which went into effect July 1, 2023, during which time there were 18,638 abortions. One percent, or about 186, of these procedures occurred past 12 weeks for allowable exceptions, according to the report.
The data is not broken out by exception category, and a DHHS spokesperson declined to provide more details to NC Health News by citing that it is not part of public record.
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Broad language causes confusion
Two years later, the term “life-limiting” remains broad and open to interpretation, which medical providers say leads to variability in patient care.
Zerden said he’s seen doctors arrive at different conclusions for the same diagnoses, demonstrating gray areas of the law.
“It is just so haphazard,” Zerden said.
“One may tell you, ‘Oh, I don't think this would qualify. I'd go to Virginia,’ while the other would say, ‘Hey, I've got a colleague at Duke. I think this would qualify, so let's get you to Durham,’” he said. “Then others may just be disapproving and not even mention it, and patients are meant to find out for themselves.”
Jeffrey Wright, a maternal-fetal medicine doctor in Wilmington, said that in his opinion, the law is working fine and that there’s “general understanding for most of these cases.”
Medical providers warned against a firm list of qualifying conditions that could further box in care.
“The reality is that there are very few things we encounter prenatally that are black and white,” said Rachel Veazey, a reproductive genetic counselor in the Triangle. “There are very few pregnancies that act exactly like a standard case.”
Veazey thinks there will always be a level of uncertainty and confusion navigating the abortion law, as no two pregnancies are the same.
“There are some calls that have surprised me, and there are some denials that have worried me or concerned me,” Veazey said. “As a genetic counselor, we are not the ones signing the life-limiting forms, so there’s not really a sense of risk that I am taking on as a provider. I feel very deeply for the physicians who are having to put their names on the forms and really be willing to back up what they're signing.”
Some providers are seeking out opinions from several colleagues before signing off to feel more comfortable that their judgements align before taking action — to have more confidence if the decision were to ever be challenged later, according to Jenna Beckham, an OB-GYN in the Triangle.
Hospital attorneys are also being consulted to interpret the legal language and how it applies to the medical care of an individual patient.
“I think many OB-GYNs would probably say they know their attorneys by name and probably have their cell phone numbers and have a lot more communication with them than in the past,” Beckham said.
Arbitrary deadlines and rushed decisions
North Carolina’s previous abortion law allowed abortions up to 20 weeks for any reason. The current law permits abortions for qualifying fetal anomalies during the first 24 weeks of pregnancy. While health providers appreciate the additional four weeks of access, they say the time frame still does not provide sufficient time to identify all the problems that can arise in pregnancy.
“There's still plenty of things that present after that time, and there's still somewhat of a rushed timeline for many anomalies,” said Amelia Sutton, a maternal-fetal medicine doctor in Charlotte.
Most fetal anomalies are discovered during the second trimester, primarily through an anatomy ultrasound scan performed between 18 and 22 weeks of pregnancy. Often, if an anomaly is discovered, further evaluation is warranted, including appointments with specialists, more imaging and genetic testing, that can provide more information about the issue.
Sutton said that all takes time, usually several weeks, meaning care for anomalies discovered within the legal timeframe can often push against the 24-week timeframe — or have no shot at all of falling within.
A diagnosis of a fetal anomaly is often a crushing blow to people carrying deeply desired pregnancies, and patients need time to process the news and consider the possible outcomes of the pregnancy, said Sutton who counsels patients through these hard moments. Her patients also want as much information as possible — often desperate for news that will point to keeping the pregnancy.
The 24-week cutoff adds “arbitrary pressure” on providers and patients alike — even rushing decision-making in some cases, Sutton said.
“I've had patients that have opted for termination without that additional information because they want to go ahead and make that decision within the state, because they don't have childcare, or they don't want to have to travel, whereas they may have wanted to wait to gather that additional information if they didn't have that deadline looming,” Sutton explained.
The abortion law can also make patient counseling more challenging.
“Just because they don't qualify as ‘life-limiting’ in the state of North Carolina does not mean that it is a great outcome or a quality of life that every family would consider acceptable,” said Veazey, a genetic counselor.
This was the case for B, a woman from Mecklenburg County, who was forced to leave the state for an abortion when she was 12 weeks and 4 days pregnant. She chose to end her pregnancy after receiving a fetal diagnosis of Down syndrome.
Pushed out of state
North Carolina’s law bans abortions at any gestational age due to Down syndrome, which is one of the most common genetic differences in a human embryo. Thirteen states have language banning abortion based on some form of genetic anomaly, with nine specifically citing Down syndrome, according to the Guttmacher Institute, a national organization that tracks trends in reproductive health.
B, who is identified by her first initial to protect her privacy, doesn’t think there should be a ban on abortion based on the diagnosis. She and her husband conducted hours of research and discussed what they thought they could handle as parents before deciding to terminate her pregnancy.
“Thinking down the line — already being advanced maternal age as well — me and my husband thought, do we want to be almost 80 years old caring for somebody with Down syndrome when they're 40 or having to put them in a state-run facility?” B explained. “Or if we did have additional kids, are they going to be responsible for the care of this child that we have? … People see the happy cases of Down syndrome or like the cute babies, but they don't necessarily always think about what it's gonna look like down the line or the fact that it can be really severe.”
Data shows that a majority of women opt to terminate their pregnancies after a Down syndrome diagnosis.
But instead of going to an abortion clinic near her home, B and her husband drove hundreds of miles and stayed in an unfamiliar city and hotel for the health services they chose.
“At the same time, you feel like you're being looked at as a criminal because you can't get the care you need in the state where you live because it's against the law,” B said. “So just obviously a shitty experience having to do that.”
J faced similar hardships going out of state to terminate her pregnancy with a “laundry list” of fetal anomalies. To make it to her appointment in Virginia, J and her husband had to drive four hours to Richmond, take days off work, get family to take care of their animals and incur additional costs for gas, hotels and food. But it’s the emotional trauma from the trek out of state that J said will stick with her the most.
“It was really hard to know that my last night with her couldn't even be home,” J said. “I had to be in a random hotel off a highway, and it felt really disrespectful to my daughter.”
The doctor in Virginia who performed J’s abortion said that her baby had already declined from the ultrasound images taken just over a week earlier in North Carolina.
“The fluid had just collected in her entire body, so from head to toe she was swollen with fluid, and it was compressing her bones in her body and her organs,” J said. “They said that it was so severe that they struggled to get her footprints for our memento box, which unfortunately you can tell.”
After a brief recovery period at the hospital, J and her husband made the hours-long drive home while she endured heavy bleeding from the procedure — an expected outcome.
J and her husband opted to do post-mortem genetic testing on their baby’s remains and found that she had Turner syndrome, a condition affecting only females where one of the X chromosomes is missing or partially missing, resulting in a variety of medical and developmental problems. Fewer than 3 percent of pregnancies in which the fetus is diagnosed with Turner syndrome result in live birth, according to the Turner Syndrome Foundation.
Navigating NC’s restrictions
Even when receiving an abortion in North Carolina for fetal anomalies, the time limit still weighs on patients who are stressed by the time crunch and others who create backup plans for if they don’t qualify for an abortion in their home state.
E, a woman from Mecklenburg County also identified by her first initial to protect her privacy, learned at 19 weeks pregnant that her baby had a heart defect. She was referred to two specialists, and the additional genetic testing offered would take three to four weeks to come back. As she navigated these difficult appointments and awaited test results, she was conscious of the 24-week deadline looming.
At 21 weeks, she received a diagnosis of Tetralogy of Fallot, a critical congenital heart defect in which the baby’s heart does not develop properly during pregnancy.
After consulting with the pediatric cardiologist, hours of research and joining groups with people who have kids with the condition or people with the condition themselves, E and her husband made the difficult decision to terminate the wanted pregnancy in June 2024 rather than face difficult years of surgery and the potential need for a transplant. E’s doctor determined she met the criteria for a “life-limiting” anomaly and could receive abortion care in the state.
Even after hearing that, E booked an appointment at a Planned Parenthood clinic in New York near relatives as a backup option — unsure she would obtain the procedure in her home state before the cutoff. Ultimately, she did, at close to 22 weeks.
She said this extra hardship is overlooked when simply looking at the numbers of abortions that do occur in North Carolina — a state that has become a hub of abortion access, given stricter laws in surrounding states.
‘Angry at the state’
Despite exceptions on the books in North Carolina, Zerden, an abortion provider at Planned Parenthood working in North Carolina and Virginia, said he’s seen North Carolinians in Virginia who would rather travel than navigate the counseling, waiting period and paperwork that it takes in North Carolina to obtain an abortion for fetal anomalies.
“People are traveling because they're scared and desperate, because their doctors are misinformed and the health care systems are misinformed,” Zerden said.
But not everyone can travel out of state to receive an abortion due to a host of limitations, including transportation, the cost of a hotel, time off work or lack of childcare.
Veazey has seen this with one of her own patients with a fetal anomaly, who exceeded North Carolina’s gestational limit and did not have the resources to travel out of state for an abortion.
The patient ended up carrying the pregnancy to term, and the baby died shortly after birth — as expected, Veazey said. It was an emotionally challenging experience the mother didn’t want to go through.
The three women NC Health News interviewed for this story all wished their pregnancies had gone differently. They all wanted to hold a healthy baby at the end. They also desperately wish that their care could have been different without North Carolina’s abortion restrictions, which they say compounded the pain of their experiences.
“I was sad at the situation and really kind of angry at the state of North Carolina for making me have to go through that,” B said. “But I don't regret doing it.”
This article first appeared on North Carolina Health News and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.