WASHINGTON — In Utah, more of Dr. Cara Heuser’s maternal-fetal medicine patients are requesting early ultrasounds, hoping to detect serious problems in time to choose whether to continue the pregnancy or have an abortion.
In North Carolina, more obstetrics patients of Dr. Clayton Alfonso and his colleagues are relying on early genetic screenings that don’t provide a firm diagnosis.
The reason? New state abortion restrictions mean the clock is ticking.
Since Roe v. Wade was overturned, many health care providers say an increasing number of patients are deciding the fate of their pregnancies based on whatever information they can gather before state bans kick in. But early ultrasounds show far less about the condition of a fetus than later ones. And genetic screenings may be inaccurate.
When you find out your fetus has a serious problem, “you’re in crisis mode,” said Sabrina Fletcher, a doula who has helped women in this predicament. “You’re not thinking about legal repercussions and (state) cutoff dates, and yet we’re forced to.”
About half of states ban abortion or restrict it after a certain point in pregnancy. In Utah, it’s generally illegal after the 18-week mark; in North Carolina, after 12 weeks.
This leaves millions of women in roughly 14 states with no option to get follow-up diagnostic tests in time to feasibly have an abortion there if they wanted, a paper published last March in the journal Obstetrics and Gynecology found. Even more states have abortion cutoffs too early for mid-pregnancy ultrasounds.
“More people are trying to find these things out earlier to try to fit within the confines of laws that in my mind don’t have a place in medical practice,” said Alfonso, an OB-GYN at Duke University.
When done at the right time, doctors said prenatal testing can identify problems and help parents decide whether to continue a pregnancy or prepare for a baby’s complex needs after delivery.
One of the most common tests is the 20-week ultrasound, sometimes called an “anatomy scan.” It checks on the fetal heart, brain, spine, limbs and other parts of the body, looking for signs of congenital problems. It can detect things like brain, spine and heart abnormalities and signs of chromosomal problems such as Down syndrome. Follow-up testing may be needed to make a diagnosis.
The type of ultrasounds patients receive – and when in pregnancy they have one done – can vary depending on the risk level of the patient, as well as the equipment and policies each practice has. For example, some women may have a first-trimester ultrasound to estimate a due date or check for multiple fetuses. But it’s not standard practice because it is too early to see many of the fetus’ limbs and organs in detail, the American College of Obstetricians and Gynecologists says.
It’s impossible to spot problems like serious heart defects much before mid-pregnancy because the fetus is so small, Heuser said. Nonetheless, she said, more patients are having ultrasounds at 10 to 13 weeks to get access to abortion if needed.
Experts say there are no statistics on exactly how many people opt for early ultrasounds or make choices based on them. But some health care providers say they’ve noticed an uptick in requests for the scans, including Missouri genetic counselor Chelsea Wagner. She counsels patients from around the nation through telehealth, frequently discussing the results of ultrasounds and genetic tests.
Wagner said these early ultrasounds can’t provide the assurance patients are looking for because “you can’t give somebody an ‘everything looks good’ or a clean bill of health off of an ultrasound at 10 weeks.”
Doctors also can’t make a firm diagnosis from a genetic screening, which is done at 10 weeks gestation or later.
These screenings, also called “non-invasive prenatal tests,” are designed to detect abnormalities in fetal DNA by looking at small, free-floating fragments circulating in a pregnant woman’s blood.
They screen for chromosomal disorders such as trisomy 13 and 18, which often end in miscarriage or stillbirth, Down syndrome and extra or missing copies of sex chromosomes.
The accuracy of these tests varies by disorder, but none is considered diagnostic.
Natera, one of only a handful of U.S. companies that makes such genetic tests, said in an email that prenatal test results are reported as either “high risk” or “low risk” and that patients should seek confirmatory testing if they get a “high risk” result.
Some may be pretty accurate, doctors said, but false positives are possible. In 2022, the Food and Drug Administration issued a warning about the screenings, reminding patients and doctors that results need further confirmation.
“While genetic non-invasive prenatal screening tests are widely used today, these tests have not been reviewed by the FDA and may be making claims about their performance and use that are not based on sound science,” Jeff Shuren, the director of the FDA’s Center for Devices and Radiological Health, wrote in a statement.
The agency is poised to release a new regulatory framework in April that would require prenatal screenings, and thousands of other lab tests, to undergo FDA review.
Even before Roe was overturned, pregnant patients have sometimes been confused by what prenatal testing does – or doesn’t – reveal about the pregnancy or fetus, said bioethicist Megan Allyse, whose research focuses on emerging technologies around women’s reproductive health. She said it’s important for doctors to go over the limitations of such screens and emphasize that the results they receive are not diagnoses.
Alfonso and Wagner said they advise getting diagnostic tests too. In addition to amniocentesis, which removes and tests a small sample of cells from amniotic fluid, these also include CVS, or chorionic villus sampling, which tests a small piece of tissue from the placenta. Both carry a small risk of miscarriage.
But lately, Wagner said, there’s “more urgency to patients’ decisions” in many states.
That’s because of the specifics of test timing. It can take a week or two to get the results of genetic screenings. CVS is offered at 10 to 13 weeks gestation, with initial results taking a few days and more detailed results around two weeks. Amniocentesis is typically done at 15 to 20 weeks, with similar timing for results.
If a state has a 12-week abortion ban, for instance, “some people may have to act on a screening,” Alfonso said.
Wagner said she’s had to counsel patients who couldn’t afford to travel out of state for an abortion if they waited for diagnostic testing.
“They are forced to use the information they have to make choices they never thought they’d have to make,” she said.
Some states restrict abortion so early that women would not have the chance to get any prenatal testing done before the cutoff.
That was the case for 26-year-old Hannah in Tennessee, which has a strict abortion ban. An ultrasound in late November, at about 18 weeks gestation, revealed she had amniotic band sequence, which is when very thin pieces of the amniotic membrane get attached to the fetus, sometimes causing fetal amputation and other problems. In Hannah’s case, the bands were attached to many of her baby boy’s body parts and ripped open multiple areas of his body.
She called clinics in Ohio and Illinois looking for a place to terminate the pregnancy, while her genetic counselor’s office phoned roughly six facilities. She finally found a clinic 4 ½ hours away in Illinois and had the procedure in early December at 19 weeks gestation. A set of results from the amniocentesis – which was done to look for the cause of the problem – came back the day after her abortion, and other results after that.
Hannah, who didn’t want her last name used for fear of backlash, said it’s “awful” to have to think about state timelines, and to travel long distances out of state, when dealing with something like this. But she’s grateful she had a firm diagnosis from the ultrasound and enough information to feel confident in her decision, which she made so her baby wasn’t in “pain and misery.”
“I know some women are not that lucky,” Hannah said. She named her son Waylen.
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Ungar reported from Louisville, Kentucky.
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