Jeni Box was 13 weeks pregnant when she got what she called “the most devastating news of our lives.”
It was February 2018. Box, a Kansas City native living near St. Louis, knew that her husband, Jake, would be shaken to hear her crying over the phone.
“I’m OK,” Box, then 36, told him, trying to settle her nerves when he answered, “but we got really bad news about the baby. I need you to leave work.”
The Box family already included two boys, Kellen and Everett, ages 1 and 3. Soon her husband was by her side. She broke the news about their third child, still growing inside of her.
“It’s a girl,” she said of the daughter they’d name Libby Rose. “And she’s dying.”
Over the days that followed, they made a profound and difficult choice: abortion.
They knew the probable consequences of the baby’s diagnosis, trisomy 18, a rare genetic disorder with severe and almost always fatal abnormalities: small head, clenched hands, heart problems, organ problems, mental disabilities, growth deficiencies, a struggle to eat and breathe.
“Most babies with trisomy 18 are stillborn,” Box said. “Most likely, I would have delivered a dead baby. If she was still alive, most likely she would have died within hours or days of being born.”
What the Boxes also know is that under Missouri’s new abortion law — banning abortions after eight weeks into pregnancy — people like them would no longer have the option to end a pregnancy, even in the case of a severe or fatal genetic anomaly.
Barring a successful challenge in court by Planned Parenthood in St. Louis, the last remaining abortion clinic in the state, the law will take effect Aug. 28.
At that Planned Parenthood, physician Carley Zeal estimates that she and her colleagues perform two or three abortions each week as the result of prenatal testing that shows what she called “major genetic and anatomic anomalies.” Most usually aren’t detected until after eight weeks of pregnancy.
Down syndrome and spina bifida are most common. But the list also includes trisomy 18, trisomy 13, which is a chromosomal disorder in which only 10 percent of babies live past a year, and others like acrania or anencephaly.
“Acrania means the fetus does not have a skull,” Zeal said. “And anencephaly means that the high-functioning portion of the brain has not formed at all, so above the eye level there is nothing present.
Missouri’s law would rank among the strictest in the nation, all but requiring anyone carrying a fetus diagnosed with Down syndrome or spina bifida or even fatal genetic abnormalities to carry that pregnancy to term. The other option would be to seek an abortion in a less restrictive state, including clinics in neighboring Overland Park or in Granite City, Illinois.
“I think bans like the one Missouri has instituted are devastating for families,” Box told The Star. In February, Box spoke out against House Bill 126 before a Missouri legislative committee. “It is stripping away the right of parents to make a medical decision. For us, it was sacred.”
Her decision, she said, was hardly made without tears or turmoil.
“If she is born alive,” Box said she thought of her unborn daughter, “she is going to suffer. She is going to be in immense pain all her life, even if that life is five minutes or five days or by some miracle, five years. How could I condemn my child to that life knowing that she would suffer?”
But shouldn’t every child, abortion opponents argue, have the opportunity to live, even if that life is brief?
In the first half of 2019, an unprecedented number of states enacted increasingly restrictive abortion laws, banning the procedure at early stages of pregnancy: 18 weeks in Arkansas and Utah; eight weeks in Missouri; six weeks, when a fetal heartbeat can be detected, for Georgia, Ohio, Mississippi, Louisiana and Kentucky.
In May, Alabama Gov. Kay Ivey signed the most restrictive abortion law in the nation, banning it outright at all stages unless the pregnancy threatens the mother’s life.
The new laws have yet to take hold, as they have yet to go into effect or are being challenged in court. Half, including Missouri’s law, provide no exception in cases of rape or incest.
Less discussed is how many of the same laws also effectively prevent people from choosing an abortion even in the case of a severe abnormality.
The reason: The most common prenatal tests for genetic problems aren’t conducted until much later in pregnancy, long after the six week “fetal heartbeat” bans or Missouri’s eight-week deadline have passed.
Amniocentesis, which analyzes cells drawn from amniotic fluid, is done between 15 and 20 weeks into pregnancy. Chorionic villus sampling — known as CVS, in which cells are taken from the placenta — happens between 11 and 14.
Most parents don’t get to know the sex of their baby until the first major sonogram at 18 to 20 weeks, when physicians can get a full view of the baby in utero.
“It is not until then,” Zeal said, “that we find that there could be multiple things wrong with the heart or with brain development or a severe spina bifida. All those things have ranges to how severe they might be. If they are severe enough, they might be reasons to end a pregnancy.”
Some states, such as Louisiana, Kentucky, Georgia and even Alabama — with a near ban on all abortions at all stages of pregnancy — have written narrow caveats into their laws. They allow abortions in grave situations like the Boxes’, in which there is a “medically futile” pregnancy or where a “lethal fetal abnormality” would cause a baby to die at birth or soon after.
Missouri’s law, signed in May by Gov. Mike Parson, has no such exception. Doctors who go against the law face up to 15 years in prison.
Abortion opponents are sympathetic, but resolute.
“It is very difficult. It is traumatic. It is very hard to get through some of these,” said Susan Liebel, the state director for the Susan B. Anthony List, a national organization whose goal is to help overturn Roe v. Wade, the 1973 Supreme Court decision that legalized abortion.
Their fundamental belief is that abortion is wrong, immoral and ought to be outlawed, notwithstanding a severe or fatal prenatal diagnosis.
“We do believe that everyone has the right to life. That’s where the phrase comes from,” Liebel said.
“It is a little counterintuitive. While it is extremely traumatic for families to have these kinds of diagnoses, we know — let’s say the baby does die, or dies shortly after birth — we know that the grieving process is actually better for the woman by actually going ahead and giving birth.
“It is a very difficult situation. It is a very heartbreaking situation. But, after aborting, we know there are so many issues with post-traumatic stress, depression.
“If you think about people you know who have had these unfortunate situations and they go ahead and the baby dies, those are usually the people who call their baby into the room and give their baby a name. This is the family who will say, ‘We have three kids, but we have one in heaven.’ They might bury or, in some way, honor that child. When it is terminated or aborted, it is usually not honored in that way.”
Like many aspects of the abortion debate, the effect on women’s mental health continues to be debated. But among the conclusions of a 2008 review of scientific literature by the American Psychological Association, “having an abortion does not increase a woman’s risk for depression, anxiety or post-traumatic stress disorder.”
Jeni Box has a wall on her home with photographs.
“I got a heart made of paper roses and it has her initials on it,” she said of Libby Rose. “She is a part of our family and a part of our story. I will always miss and grieve that we never got to know her.”
Box, nonetheless, thinks it would have been “hellish” and “horrific” to get the diagnosis she did at 13 weeks and have Missouri law force her to carry the pregnancy to term.
“If I knew she was going to survive and have a meaningful life,” Box said, “I would have quit my job and sold my home, if we could afford her care. But she was not going to have a life that met the standard of a meaningful quality of life.
“I said to Jake, I said to him, ‘I think I can survive this if I have an abortion. I know we’re making this choice out of love. I know we’re sparing her pain and we’re not breaking our children’s hearts. But if I deliver a dead baby, I don’t know if I can come back from that.’”
A form of eugenics?
Equally fraught is the issue of Down syndrome, the most common genetic disorder.
About 5,300 children are born with Down syndrome each year. In 2015, a paper in American Journal of Medical Genetics also estimated that another 3,100 Down syndrome pregnancies are aborted each year following prenatal testing.
Missouri’s law explicitly bans abortion done solely because of a diagnosis of Down syndrome.
“No person shall perform or induce an abortion on a woman if the person knows that the woman is seeking the abortion solely because of a prenatal diagnosis, test, or screening indicating Down Syndrome or the potential of Down Syndrome in an unborn child,” the law reads.
Others states such as Indiana, Louisiana and Ohio have enacted similar laws, all of which have been blocked by courts. Missouri’s Down syndrome provision, together with a provision that bans abortions on the basis of race or sex of a fetus, is being challenged as part of Planned Parenthood’s suit, filed Tuesday in federal court.
Abortion opponents introduce such provisions to prevent what they have come to call “fatal discrimination,” “selective abortions” or “antidiscrimination abortions.” The claim is that, as a result of prenatal testing, the population of individuals with Down syndrome is slowly being wiped out and that abortions are being used as a form of eugenics.
Introducing the Down syndrome amendment into Missouri’s abortion law, Rep. Shamed Dogan, R-St. Louis, raised that specter. He said he was inspired by a story from Iceland.
In August 2017, CBS News claimed Iceland, because of prenatal screening, had all but eradicated Down syndrome. It reported that nearly 100 percent of women who found out they were having a child with the disorder chose to abort. The piece went viral, repeated by countless news outlets.
“You see almost an elimination of Down syndrome babies and children from their society,” Dogan told his colleagues on the Missouri House floor. “That gets to a fundamental question of what kind of society do we want to live in. … We don’t have quite that extreme rate in America, but that is extremely disturbing to me because it evokes the idea of eugenics.”
Said Liebel of the Susan B. Anthony List: “We are terminating people who don’t meet our needs, or our abilities, or what we think is a person or a human. That gets us down a slippery slope.”
The Icelandic government tried to correct the record as the story spread. Iceland had not eradicated Down syndrome, the government said, nor is it trying to do so.
Iceland has a tiny population, fewer than 340,000 people. It logs about 4,500 births each year. Down syndrome occurs in about 1 in every 750 to 800 births, meaning the country statistically would expect about six children born with Down syndrome yearly. Instead, two to three children are born with it each year, as some women who get screened decide to continue their pregnancies.
In the U.S. it is about 5,000 yearly; some 250,000 Americans have Down syndrome. About 67 percent of women whose pregnancies screen positive for Down syndrome choose to end those pregnancies, according to a 2012 study published in the journal Prenatal Diagnosis. In Iceland, it is between 80 and 85 percent.
“Among the misconceptions which have been promoted,” the ministry stated, “is the claim that the policy has been adopted by the Icelandic authorities of preventing mothers from giving birth to children with Down syndrome. These statements are not based on facts.”
But the story persists, as does the larger moral and ethical issue of prenatal testing and abortion.
In May, Pope Francis weighed in on prenatal testing, urging physicians to help women bring to term even sick infants likely to die at birth or soon after. Last summer, he likened abortion and the use of prenatal testing to the “white glove” equivalent of Nazi-era eugenics.
“Last century, the whole world was scandalized by what the Nazis did to purify the race,” Francis said. “Today we do the same thing but with white gloves.”
More recently, he compared the practice to hiring a hit man.
“Is it legitimate to take out a human life to solve a problem?” the pope asked attendees at a Vatican conference on abortion and prenatal testing. “Is it permissible to contract a hit man to solve a problem?”
In state after state, lawmakers who present abortion bans regarding Down syndrome — as well as for provisions barring abortions in cases of race and sex selection — do so, they say, as a matter of civil and human rights.
To that, abortion-rights backers respond: Nonsense.
Abortion rights proponents argue that any talk of eugenics and discrimination is just a volatile rhetorical tool, a calculated way for opponents to attack and further erode abortion rights.
“These are just additional efforts to undermine abortion access for all women. They are trying to limit as much as they can piecemeal,” said Mallory Schwarz, executive director of NARAL Pro-Choice in Missouri. “The focus on Down syndrome is meant to inflame an emotional response. They are not protecting people with certain genetic mutations. They are simply limiting options and abilities of parents to plan for their families.”
Zeal of Planned Parenthood said, “It almost feels as though they are using these vulnerable people as political pawns. People in really awful situations making difficult decisions ought to be able to make those decisions privately, as opposed to the government coming in.”
The Down Syndrome Guild of Greater Kansas City, which supports people with Down syndrome and their families, takes no position on laws. Amy Allison, the group’s chief operating officer, acknowledges that they work with families with strong feelings on both sides of the debate.
“In general, we have many families who are extremely pro-life and are all for these bans and bills and say this is eugenics,” she said.
The organization also has many parents who support legal abortion and believe that individuals with Down syndrome, their families and public emotions are being exploited for a political agenda, Allison said.
“We have moms who would not want to be forced to have their child,” Allison said. “They chose to have their child.”
She said the claim that 90 percent of women who discover they are pregnant with Down syndrome abort those pregnancies is incorrect and “hysterical.”
“It doesn’t help. It doesn’t,” Allison said. “It only increases parental anxiety. Of course we want to keep every baby born with Down syndrome. Life with Down syndrome is good. It’s different, but it’s good.”
But she said the incorrect claim of eugenics only stokes parental fears and reluctance to continue a pregnancy to term. About 50 babies will be born in Kansas City this year with Down syndrome, Allison said. The organization serves 1,600 families.
“If all people read is that nine out of 10 women terminate, they think there is nobody with Down syndrome,” Allison said. “Our birth rates (in the Midwest) have not declined with prenatal testing.”
Sara Jahnke, now 40, was 37 years old when she and her husband, Nicholas Orlando, found out the baby she was carrying would be born with Down syndrome. Crosby, whom Jahnke described as a joyful, blond-haired, blue-eyed boy with a love of “Sesame Street,” football and sandboxes, is now 3.
“He walks into the room and lights it up,” the Prairie Village mom said.
Although early on, Jahnke was informed about the option to abort, there was no part of her that considered it.
“To me, at the time I got pregnant, I already felt connected to it as our child,” Jahnke said, “especially at the point when I started to feel him move.”
Like her daughter, Ainsley, now 12, Crosby even in utero seemed to respond to his mother’s voice. Jahnke and her husband both come from large families. They knew they would be immensely supportive in helping them raise a child with Down syndrome. The couple could afford to have Nicholas, her husband, stay home to care for Crosby.
“I would say that I don’t regret at all not choosing abortion,” Jahnke said. That said, she added, “I also wouldn’t judge someone else for making that choice, because it is different. It is very different.”
Jahnke has concerns about how the medical community deals with women once prenatal testing shows that a child has Down syndrome. Her own experience with her obstetrician was excellent, she said, although that’s hardly true for everyone.
“For every friend I’ve made who has a positive diagnosis experience, I know two who were given misinformation or encouraged to abort,” she said. One friend who now has a child with Down syndrome, she said, went to an obstetrician who specialized in high-risk pregnancies.
“When they got the diagnosis,” Jahnke said, “the comment from the physician was that the only choice would be to terminate this pregnancy.”
Some parents have noted that once prenatal testing predicts Down syndrome, or any other number of genetic anomalies, the language physicians use sometimes tends to shift, even if not so subtly, from talking about one’s pregnancy as “the baby” to “the fetus.”
“The story that is painted for many is a sad life with a child who will never be independent or a contributing member of society. What I’ve learned is that is far from the current truth,” Jahnke texted. “It is an amazing experience that has impacted my life in ways that I never expected. I don’t think the medical community ever gives that.”
The Down Syndrome Guild of Greater Kansas City thinks it’s important for parents to know they have support and options, such as adoptions through organizations like The National Down Syndrome Adoption Network.
Still, Jahnke thinks it is wrong for Missouri and other states to prevent women in similar situations from choosing abortions. Receiving the diagnosis is hard enough. Choosing to have a child with Down syndrome or other genetic anomalies requires resources many don’t have. Being told you have no choice in your own state, Jahnke said, only makes the choices harder and the pressure and stress greater.
“I don’t think it should be illegal,” she said. “I’m happy that I made the choice that I did. But I understand that not everybody is in my position.”