Choosing life amid a prenatal diagnosis

After losing their first baby to miscarriage, Alex and Sarah Kennedy were thrilled late last year to find out they were pregnant again. “We went in for our first ultrasound around eight weeks,” Sarah said. “As soon as she put the thing on my belly I saw a fluttering heartbeat. That just gave us so much peace.” During the appointment, the Kennedys’ doctor asked if they wanted to do noninvasive prenatal testing.

Typically offered at about 10 weeks of pregnancy, NIPT screening uses fetal DNA circulating in the mother’s blood to test for chromosomal abnormalities. It can also detect the baby’s sex. “We really did it just to find out the gender,” Alex said. “We never found out the gender of the first baby and that would have been nice.” While waiting on the results, the couple planned out a private gender reveal to share with family, friends, and social media followers.

“We had a basket of two different-colored flowers, pink and blue,” Sarah said. “Since I found out about the pregnancy first, I wanted Alex to be able to find out the gender first.” In the video posted this February, Sarah had her back turned while Alex read the results and picked up the pink bouquet. They named their daughter Haven. But a few days before they found out their baby’s sex, the couple learned the NIPT screening had also found a possible complication.

“My OB wanted to call me, the blood test people wanted to call me,” Sarah said. “That was a lot of anxiety—‘What’s wrong, why does everyone want to talk to us so urgently?’” According to the test, Haven had a 62% chance of having trisomy 18. The condition, caused by an extra copy of chromosome 18, can cause heart defects, under-developed lungs, and low birth weight. Most babies diagnosed with the rare syndrome do not survive to birth, and those who do typically die soon after birth, according to the Cleveland Clinic.

“Hearing those words on the phone call, that she’s most likely to pass in the womb, this is a life-limiting diagnosis, was super devastating,” Sarah said. During their first conversations with their obstetrician about next steps, the doctor said it was standard to offer abortion as an option. As screening tests grow in popularity, many parents like the Kennedys say they feel pressure from medical professionals to consider abortion when they receive concerning test results—even though medical boards recommend physicians do further testing before discussing abortion with patients.

The tests aren’t always as accurate as perceived, and pro-life doctors worry the tests could lead couples to abort their children even before the babies have a clear prognosis. The Kennedys refused to abort their baby. They hoped the test results were wrong, and they planned to protect her life regardless. Alex and Sarah made appointments with specialists who could give them a more definitive diagnosis. “Even though the NIPT was saying 62% chance, I kept saying, ‘Well, God can do a lot with that extra 38%,’” Alex said.

The merciful choice?

After Sarah Kennedy underwent a more in-depth ultrasound and an amniocentesis, where a lab examines amniotic fluid extracted from the womb, physicians were more confident that Haven did have trisomy 18. At that point, medical providers ramped up their pressure to abort, the Kennedys said. “I feel like the high-risk doctor didn’t really see her as a human.

She saw her as a fetus,” Sarah said. “She was really pushing termination.” The couple switched doctors and found a provider who prioritized continued monitoring and helped create a plan for birth and possible medical interventions for Haven if she survived. Though their family and friends were supportive of their choice to protect Haven, online commenters were not. Alex began posting videos of the couple writing Bible verses on Haven’s nursery wall as a way to process their experience, critics suggested abortion was the merciful choice for Haven.

“There were several people that said, ‘It’s selfish of you to carry her all the way and not terminate, because she could be in pain,’” he said. Some couples do choose to abort babies they worry will be born with serious health problems. In June, YouTuber Jesse Ridgway posted on social media that he and his wife had aborted their son after learning he had Down syndrome, or trisomy 21. Ridgway’s post drew condemnation from pro-life and disability advocates who likened the couple’s choice to eugenics. Alex Kennedy believes such a decision comes from the belief that a medically complex child would be a burden.

“But out loud they’re saying, ‘Oh, I just don’t want the baby to suffer,’” he said. “They don’t want to flip their whole world upside down.” A study published in the Journal of Genetic Counseling last year found that more than 60% of parents who received abnormal genetic results from tests on a baby’s amniotic fluid or placenta chose abortion. The rates were highest for babies diagnosed with trisomies 13, 18, and 21. In the United States, an estimated 60%-90% of babies diagnosed with Down syndrome are aborted, and in countries like Iceland and Denmark, nearly every baby diagnosed with the condition is killed before birth.

“This is the history of our genetic testing—it is with an eye toward offering to terminate this child,” said Dr. Robin Pierucci. Pierucci worked as a neonatologist for 25 years before she founded Navigating Fetal Concerns, an organization supporting parents who receive difficult prenatal diagnoses. She said that although prenatal genetic testing can be a useful tool for doctors and parents to know how to prepare to support a baby with a health condition, it is often used to end the baby’s life instead. Danish doctors first used amniocentesis to determine an unborn baby’s sex in a 1960 case.

The baby’s mother was a carrier for hemophilia, a condition that keeps blood from clotting properly and mostly affects males. Doctors determined the woman was carrying a baby boy, and because he had a 50% chance of having hemophilia, they aborted him. “In no other patient population do we offer death prior to even meeting the patient,” Pierucci said. “Even when we get the diagnosis right, a diagnosis is not equivalent to the prognosis.” As a neonatologist, and in her work counseling families of children with serious health complications, she has seen many infants live longer than expected and surpass developmental expectations, she said.

Expectant mothers often only undergo in-depth testing like amniocentesis and high-resolution ultrasounds after doctors identify a potential problem during a routine ultrasound, or now through the use of NIPT screenings. While most women have their first comprehensive ultrasound about halfway through pregnancy, companies that offer NIPT claim enough of the baby’s DNA in his or her mother’s blood at about 10 weeks to assess the possibility of a genetic syndrome. In 2012, the American College of Obstetricians and Gynecologists recommended doctors offer NIPT to pregnant women over the age of 35 or who have a history of chromosomal abnormalities in their family or in previous pregnancies.

At the time, major medical organizations recommended against offering the screening to the general population. But in October 2020, the organization again updated its guidance to suggest providers test all pregnant women. “It’s ubiquitous, it is everywhere,” Pierucci said. And even though the screening is not always accurate and medical organizations direct doctors to perform more accurate tests if red flags appear, Pierucci says she still sees physicians offer abortions based entirely on the screening. “I’m watching it be used to make medical decisions, and that’s deeply concerning.”

Most parents who opt for the NIPT screening do so before the anatomy scan at 20 weeks. In states that only protect unborn babies after viability (broadly considered to be about 24 weeks), parents may choose to abort because of the screening results or after follow-up diagnostics. But even among the 20 states that protect unborn babies in the first trimester of pregnancy, eight have exceptions for so-called “life-limiting fetal anomalies.”

Unnecessary fears

Pro-lifers point out that the screening test, while popular, is often inaccurate. Pierucci stressed that early testing options are designed to find higher-risk situations for further testing, not offer an outright diagnosis. “NIPT is a screening test. It is not diagnostic,” she said. Screenings can give a false positive for conditions like Down syndrome due to variations in the mother’s cells or a genetic abnormality in the placenta, not the baby.

Screenings for rare conditions have been found to be even less reliable. While the screening is typically accurate for trisomies 18 and 21, a 2022 New York Times investigation found that NIPT screenings produced inaccurate results up to 85% of the time for more rare conditions. Despite inaccuracies, many NIPT companies market the tests as highly accurate. And though the U.S. Food and Drug Administration does not directly regulate the tests, the agency in 2022 issued a safety warning about the risks of false positives on the screening. Days after Christmas in 2022, Mayzie Cremer and her husband learned they were expecting their first baby.

“We told both of our families earlier than most people would,” she said. Like the Kennedys, they decided to use NIPT screening to learn whether they were having a girl or a boy. When Cremer was 14 weeks along, she received the NIPT results. Her doctor called on a Monday evening to tell her she was having a girl and that the baby was at high risk for Turner syndrome. The rare condition occurs when one of a female’s X chromosomes is missing or partially missing, and it can cause growth delays and heart defects. Cremer said her doctor’s first question during that phone call was, “Per protocol, do you want to terminate your pregnancy based off of these results?” Cremer said no.

She and her husband scheduled a detailed ultrasound with a maternal fetal medicine specialist. She called her mother, who began researching the tests’ accuracy. Though her doctor said the tests were 98% accurate, Cremer’s mother learned that for rare conditions, the statistic is not as clear-cut. Early screenings for Turner syndrome are often only 20%-30% accurate. By Thursday of that week, Cremer and her husband believed the test was wrong. And their ultrasound the next Monday confirmed that their daughter showed no markers of Turner syndrome.

Still, they had to continue seeing a specialist throughout the pregnancy because of the initial red flag. Cremer gave birth to Clara in late August 2023, and she looked completely healthy. “It was seriously the biggest peace in the world,” she said. A few weeks later, blood tests confirmed that Clara did not have Turner syndrome, and she remains healthy today. Cremer says she likely would not do NIPT again. “It’s scary how much you can know,” she said. Several companies that produce the NIPT screenings have already faced legal backlash over their marketing. Last year, the company Natera agreed to an $8.25 million settlement to resolve a class-action lawsuit alleging it did not disclose that its test could produce false positives. And a new lawsuit filed in June accuses the company of overstating the accuracy of its preimplantation test for embryos created through in vitro fertilization.

The plaintiffs say the results led them to dispose of potentially viable embryos. Dr. Kerri Brackney, a maternal fetal medicine doctor in Tennessee, said it is critical that patients who choose to have NIPT screenings receive appropriate counseling after getting their results. But she said many regular OB-GYN offices do not have the time or staff to provide patients with enough information about the tests. “Using them wisely, using them with good counseling and good information, they can be helpful,” she said. “But are they used for evil? Absolutely.” Brackney believes medical providers should not offer the screening unless a mother is at high risk for an abnormality or if something concerning comes up in pregnancy.

For some parents, genetic screening can help them decide where they will deliver and who they want on their child’s medical team after birth, she said. But Brackney doesn’t recommend NIPT testing for couples who just want to know the baby’s sex early in the pregnancy. “There are options for that on Amazon,” she said.

A life worth loving

Over the course of more testing and ultrasounds, Alex and Sarah Kennedy learned that their daughter Haven, who did have trisomy 18, also had an associated enlarged heart. Doctors believed she would not survive to full term. In early July, at 33 weeks pregnant, the Kennedys went to the hospital after Sarah noticed Haven had not been as active. They listened as the girl’s heartbeat slowed and stopped. “We know she didn’t feel any pain in the womb,” Sarah said.

“We do feel peace from that.” Doctors induced labor and after Sarah gave birth, the couple and their family spent the day with Haven in the hospital. They treasured the time together. “Even with her outcome, we still wouldn’t have chosen any different,” Alex said. “We wouldn’t have terminated.” Sarah and Alex say they likely will not use NIPT the next time they get pregnant. “I would be perfectly fine waiting to find out the gender at the anatomy scan,” Sarah said. “And if we were to see little signs of something being abnormal, then we would pursue NIPT just to see.”

After posting their story online, the Kennedys said they have heard both from people who believe they should have aborted and from other families who are wrestling with a frightening prenatal diagnosis. They say they encourage those families to find joy in preparing for their baby’s arrival, even if they are facing serious health conditions. By decorating the nursery, having a baby shower, and praying over Haven, the Kennedys honored their baby before her birth. “It all goes back to loving God, loving others,” Alex said. “And one part of loving others is giving them a chance, a fighting chance.”

Source: Choosing life amid a prenatal diagnosis | WORLD

Now to the King eternal, immortal, invisible, to God who alone is wise, be honor and glory forever and ever. Amen.
1 Timothy 1:17

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Choosing life amid a prenatal diagnosis

The merciful choice?

Unnecessary fears

A life worth loving

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