Florida’s abortion ban has an exception for fatal fetal anomalies. So why was this woman forced to go to Virginia?

This article is part of The 19th News Network’s Abortion on the Ballot series.

Emily Friend decided to paint the nursery a delicate green. She had originally settled on purple — gentle and welcoming, a color she hoped would make her baby feel at home. But Friend, who lives between Arcadia and Port Charlotte, in Southwest Florida, couldn’t find room furnishings to match the hue. So she and her boyfriend decided on a delicate green that felt joyful, perfect even if it wasn’t their first choice.

The paint color was one of a million small details running through her mind, alongside which toys to buy during Wal-Mart runs; how the couple would upgrade the old crib that child after child in her own family had fallen asleep in; how Friend, then 25, would tell people about the pregnancy.

After her first ultrasound this spring, she sat her family down and pulled out the images from the appointment. The reaction was better than she could have hoped. Friend’s mother gasped, stunned and clearly excited, before she started to cry. Her grandmother followed with more tears. Her father, the stoic one, was beaming.

Friend felt the same eager anticipation. Every Sunday, she checked her pregnancy tracker to see how much her baby was growing compared to various foodstuffs: one week, the size of a berry, another the size of an olive.

Yet her joyful decision-making — the onesie shopping and the baby shower planning — would soon give way to a far more agonizing set of questions.

Only a few weeks after that family meeting, Friend learned from the bloodwork — the same draw that would tell her she was having a boy — that there was a 4 in 10 chance of a life-threatening fetal anomaly. Maybe the test results were a fluke, she told herself. And 40 percent wasn’t that high, right? Friend resolved to stay calm. Instead of worrying, she spent the weekend — her first Mother’s Day of many, she hoped — buying flowers and maternity clothes.

At a follow-up appointment that Monday, the doctor warned Friend that she needed to visit a specialist as soon as she could. She saw a perinatologist three days later, who identified a host of congenital defects: clubbed feet, brain abnormalities, potential issues with his liver and organs. They performed more advanced testing. The following Monday, additional blood test results brought more definitive news: Her baby boy had a chromosomal condition known as Trisomy 18, an anomaly that is fatal before the first year of life in more than 90 percent of cases. Those who survive are still severely disabled. It was, the doctors told her, a diagnosis “incompatible with life.” Statistically, her baby — if she had a live birth — would only live a few weeks, at most. But with Trisomy 18, most pregnancies end in miscarriage or stillbirth.

No matter what Friend decided to do next, her options were already limited in Florida.

She was just past 16 weeks pregnant. The Sunshine State limits abortions after six weeks, with an exception for pregnancies with fetal anomalies. But it soon became clear to Friend that doctors didn’t believe it applied to her situation. While waiting for the advanced test results, Friend’s doctor offered to confer with colleagues in nearby St. Petersburg to see if termination would be an option under the law in Florida.

When the results confirmed Trisomy 18, the doctor did not offer to connect her with abortion resources in Florida. Instead, she gave Friend two options: She could continue the pregnancy, or she could call the National Abortion Hotline, which helps people navigate abortion bans, including finding financial and logistical support for out-of-state travel. The subtext was obvious. Doctors didn’t believe Friend’s diagnosis qualified for a medical exception. If she didn’t want to face the high probability of watching her child die — or wait to miscarry — she’d have to travel out of state for an abortion.

Sobbing in her car, she and her boyfriend tried to figure out what options, if any, they had. She couldn’t believe just how quickly things had taken a turn.

“He was fine for so long — until he just really wasn’t,” Friend said.

Serious fetal health complications have become a central talking point in the fight over abortion rights across the country. Several women who have filed lawsuits challenging their states’ abortion bans have specifically cited their inability to terminate pregnancies in such circumstances. A Texas woman named Kate Cox sued her state over access to an abortion after doctors discovered Trisomy 18 in her fetus. Cox was forced to leave Texas, which doesn’t have an exception for fetal anomalies, despite hers and her doctors’ arguments that continuing a likely nonviable pregnancy could also threaten her own life — the only time where that state’s law suggests abortion can be legal.

A handful of states with abortion bans — Florida, North and South Carolina, Georgia, Alabama, Indiana, Iowa and West Virginia — have included language that purportedly provides an exception in cases of fatal fetal anomalies. But in practice, securing those exceptions often proves impossible. The problem is, it’s not always clear what it means for an anomaly to be fatal. And if physicians in Florida err on the side of permissiveness, they risk being charged with a felony that carries up to five years prison time.

It’s an issue some will vote on this November. Florida is one of 10 states voting directly on abortion rights. The measure, Amendment 4, would enshrine abortion protections up until fetal viability — typically around 23 to 25 weeks. Florida is one of only five states where the results could actually reverse an active state ban, one of the only viable paths in a conservative-run state. Recent polling suggests that the proposal is falling short of the 60 percent voter support needed to pass ballot measures.

Organizations supporting and opposing Amendment 4 have raised millions of dollars. The state’s Republican apparatus, headed by Gov. Ron DeSantis, has come out strongly against it, leveraging state resources to campaign against the measure and attempting to block TV stations from airing ads that support it. After some waffling, former President Donald Trump, a Florida resident, recently said he would vote against the measure.

For proponents of Amendment 4, the law’s toll on people like Friend — and the doctors who care for them — have taken a starring role. The main campaign organization supporting the amendment has highlighted the burden the state’s abortion laws have imposed upon people facing complex wanted pregnancies, emphasizing the difficulty patients and doctors face in navigating exceptions. One ad, released in October, highlighted the experience of another couple who could not get an abortion after doctors discovered a fetal anomaly. In that case, Deborah Dobert gave birth to a baby who died after 92 minutes.

Opponents of the measure have tried to refute those arguments, saying that people with medical needs are still able to get abortions through the exceptions. The state law says patients can terminate their pregnancies through the first two trimesters of pregnancy if doctors discover a “fatal fetal anomaly” — to qualify, patients need two physicians to assert in writing that this is the case, based on “reasonable medical judgment.” The state has added in other exceptions, including an allowance for abortion up to 15 weeks of pregnancy if the patient is pregnant as a result of rape or incest and can produce supportive legal documents such as a restraining order, police record or court order.

These exceptions are controversial in anti-abortion communities, with some arguing that patients should give birth and rely on palliative care for newborns. Proponents of the state law say that allowing abortion in these rare situations is a common-sense approach. It’s also one that could be more politically palatable, especially as abortion bans continue to fuel public outrage.

“Very few people think abortion should be illegal in all cases. Carving out these exceptions is a way for Republican lawmakers to be like, ‘Look, this isn’t a total ban,’” said Ashley Kirzinger, a pollster at KFF, a nonpartisan health policy research, polling and journalism organization. “If you want to have an abortion policy in place in your state that you can generate support for — not entirely bipartisan but you may get some support among independents — these exceptions are the way to do it.”

The language of the Florida law’s exception, asserting that the anomaly must be “fatal,” suggests a black-and-white situation. In September, the state health department issued a bulletin about the exception, declaring: “The law is clear.”

But doctors aren’t so sure.

Often, an anomaly can mean it is incredibly likely that a pregnancy will not be viable, but doctors cannot offer a completely certain guarantee. It’s also not clear whether an anomaly that will ultimately lead to death — in a matter of days, or weeks or months — qualifies.

“Fetal anomalies are not that common, but when we see them, the vagaries of the law and murkiness of the law really hamstring doctors,” said Dr. Chelsea Daniels, a Miami-based physician who cares for patients at multiple Florida Planned Parenthood clinics. “It’s true for all the clinical health exceptions that they barely feel like they’re exceptions. Trying to interpret the vagaries, we ultimately feel really muzzled.”

The lack of clarity means that health care providers — those working at abortion clinics and hospital-affiliated specialists who treat high-risk pregnancies — are often defaulting to the most conservative interpretation. With something like Trisomy 18, for example, multiple physicians told The 19th that because there is a small chance a baby will live, even for a little bit of time, they don’t believe that would be enough to qualify for an exception.

This is all made more complicated by the cutoff of Florida’s abortion ban. In July 2022, a month after Roe v. Wade fell, Florida began to enforce a 15-week ban, which was superseded this May by the six-week prohibition now in effect. If Florida’s previous 15-week ban offered even a narrow window, the transition to the current law — which took effect May 1 after a protracted legal battle — has made care in cases of fetal anomalies nearly impossible to find. Most are discovered at a 20-week ultrasound.

“There is at least a chance I might catch it before 15 weeks,” said Dr. Alexandra Levy, an OB-GYN in the Miami area who has directed patients out of state after diagnosing fetal anomalies in their pregnancies. “There are many things I will not catch until the 20-week scan, but that gives me at least a chance. Six weeks is virtually a total ban.”

Florida data shows that in the years leading up to Roe’s overturn, close to 750 abortions were performed annually because of a “serious fetal genetic defect, deformity or abnormality.” As of this September, only 219 took place in the state. One maternal-fetal medicine specialist in the Orlando area, who asked that her name be withheld because she has been harassed at work for her support of abortion rights, said that she can make a case for an abortion in about half of the fetal anomaly patients she sees. These instances have included cases when patients discover diagnoses like anencephaly, in which the fetus does not develop large portions of a brain or skull, and for which there is no known treatment.

But the rest cannot get an abortion in the state. It’s because she simply cannot say for sure that the anomaly will in fact result in immediate death — even if the odds are clear.

“If it’s not fatal — they won’t die imminently — they have to go out of state for an abortion,” said Eileen Diamond, the director of a Fort Lauderdale-based abortion clinic who has counseled multiple patients under such conditions since Florida’s six-week ban took effect.

This dynamic has also emerged in other states with similar exceptions. Dr. John Allbert, a maternal-fetal medicine specialist in North Carolina — where a 12-week ban allows abortions up to 24 weeks in the case of “life-limiting fetal anomalies” — said he has referred numerous patients further north to Virginia and Maryland upon discovering fetal anomalies that likely rendered pregnancies nonviable.

But that journey isn’t always feasible for his patients, and many who aren’t able to leave the state for an abortion have as a result been forced to stay pregnant. Even those who he believes can qualify for the state’s narrow exception often can’t afford the termination procedure in-state, which is not covered by insurance and can cost thousands of dollars.

“It’s terrible, it’s awful to tell them,” he said. “It makes you want to cry.”

In June, Friend and her partner drove 90 minutes from their home and boarded a budget airline flight from the Tampa airport  to Richmond, Virginia, the only place they could find a doctor who would perform her abortion. She’d borrowed money from her grandmother to cover the flights. Her father was paying for their hotels and cabs. A collection of abortion funds had agreed to pay for her procedure, which would cost just shy of $7,000. They would eat frozen food at the hotel to keep the trip as inexpensive as possible.

Friend’s abortion took two days. On the first, they dilated her cervix using laminaria, a type of sterilized seaweed. The process was so painful that it caused her to spend the night vomiting. She felt almost guilty about how distracted she was by her discomfort — it felt like she should be using every muscle to mourn her son. The next day, just past 18 weeks of pregnancy, she went in for her abortion. The experience marked her first time as a patient in a hospital.

The procedure went smoothly. Afterward, the hospital staff gave Friend what they called a “remembrance box,” with a small heart-shaped pillow and a set of tiny inked footprints.

Friend and her boyfriend spent one more night in Richmond. The next day they checked out from the hotel at 10 a.m. and wandered the city, waiting for their 9 p.m. flight home. She was still sore and bleeding. On the flight, the air pressure added to her discomfort — it was, she said, “horrifically painful.” The trip felt like another insult to injury — she couldn’t even take her son’s remains on the flight. Those arrived in the mail, damaged from the journey.

“I wish I could have been home,” she said. “I wish I could have just been home with my animals and in my house. I wish that I didn’t have to have him shipped back in the mail and have the box come and he’s like half crushed in even though it says human remains on the side.”

Months later, Friend is still behind on her bills because of the trip, trying to figure out when and how she could pay back her family. It’s hard to talk about her son without crying. His remains sit on her dresser, and she still has a hat one of her customers at work knitted for him. She keeps wondering whether her boy would have someday been the kind of kid who liked dinosaurs or construction trucks, or whether he’d have preferred sharks.

And though she wants to get pregnant again, she is terrified something would go wrong, and that she’d be forced once more to travel hundreds of miles away.

Friend had always supported abortion rights. She was devastated when Roe was overturned, comparing it to “The Handmaid’s Tale.” When Florida’s six-week ban took effect, she and her boyfriend discussed whether they should leave the state.

Come Election Day, Friend plans to back Amendment 4. She has never cared about politics and largely doesn’t trust politicians. But this year, she said she will probably vote for Vice President Kamala Harris because she has campaigned on preserving abortion rights, even though Friend is hardly enthusiastic about either candidate. Friend has begun regularly checking her phone to see if she could find any information about how Amendment 4 is polling. The churches near her home, a more conservative area, are surrounded by “No on 4” yard signs. It makes her feel ill every time she drives past.

For Friend, the stakes are existential.

“It’s my rights,” she said. “And I’m so fucking scared it’s going to happen again — what happened to my son. I don’t want to have to go all the way to Virginia. I can’t do it again. I can’t go through the pain again.”

On November 5, Friend will vote for the first time. In a different world, she would also have a two-day-old son.