Will There Be No More Disabled Children Born In The Future?
This collab story authored by Karina Sturm and Nikolai Prodöhl was originally published at Die Neue Norm and is translated from German.
Two Pregnancies, Two Decisions
“If the ultrasound shows anything abnormal, would you terminate the pregnancy,” asks the gynecologist? Sina lies in a sterile examination room in Germany while the gynecologist, her brow furrowed, studies the black-and-white ultrasound monitor and slowly moves the ultrasound probe across Sina’s slightly rounded belly. “Trisomy 21 wouldn’t be a reason for us to have an abortion. Trisomy 13 or 18, maybe,” replies Sina Leimbach and shrugs. She’s 13 weeks pregnant. When the doctor’s hand suddenly pauses, Sina immediately sees why: on the screen, there’s a large bulge on the fetus’s body almost the size of its head, even visible for an un-trained person.
Just moments earlier, Sina and her husband were joking and laughing in the waiting room—a routine that defines their marriage. Humor has always been their way of handling life’s challenges. “That moment has stuck with me, because it was the beginning of our journey, but also perfectly describes how it ended: happy,” Sina says.
Minutes later, the then 25-year-old learns that the fetus has an omphalocele, a rare congenital condition in which parts of the baby’s abdominal organs protrude through a large opening in the abdominal wall into the umbilical cord and remain outside the body. The organs are often only covered by a thin membrane. Omphaloceles are often associated with other genetic findings such as trisomy 13 or 18—which can be significantly life-limiting.
To find out whether her fetus has any changes in the number of chromosomes, the doctor recommends a placental biopsy, a small tissue sample taken from the placenta. The results are normal: no trisomy 13 or 18. Still, Sina is offered the option of abortion. “The doctor said the omphalocele was a medical reason that would allow termination even after the 12th week,” Sina recalls.
Abortion and Prenatal Diagnostics
In Germany, abortions are legally permitted up to the 12th week of pregnancy, but only after mandatory counseling and a three-day waiting period. After week 12, abortions are allowed only if continuing the pregnancy poses a risk to the pregnant person’s physical or mental health – but the latter one has a very broad definition. According to Germany’s Federal Statistical Office, there were 103,927 abortions in 2022—of which 2,373 occurred after week 12 and 740 after week 22. Most of these so-called ‘late-term’ abortions fall under a medical indication, meaning they are justified for health reasons. “In reality, this medical indication often just disguises the former so-called ‘embryopathic indication’,” says Jonte Lindemann, medical policy advisor at the Gen-ethisches Netzwerk Germany.
Until a 1995 reform, in Germany, it was allowed to abort a fetus purely because of a diagnosed disability. The law was repealed, but in practice, not much has changed.
“Technically, abortions, solely due to a fetal disability, are banned. Yet, they still happen—because doctors assume that having a disabled child would cause the pregnant person ‘unbearable psychological distress.’ That assumed distress is then reinterpreted as a health risk, making abortion under a medical indication legal again,” explains journalist and author Sasha Kirsten Achtelik, author of “Selbstbestimmte Norm. Feminismus, Pränataldiagnostik, Abtreibung”. Achtelik calls this practice deeply problematic: Firstly, it’s ableist to assume that raising a disabled child automatically causes unbearable mental suffering—it reflects how ingrained prejudices about disability remain. In contrast, people with existing mental health conditions (like depression) often face much higher barriers when they seek abortion later in pregnancy.
The Role of Prenatal Testing
Some congenital conditions can be detected through prenatal diagnostics, as was the case with Sina. The term “prenatal” refers to all tests performed before birth to detect congenital disabilities. These include ultrasound screenings (like nuchal translucency measurements), chorionic villus sampling, amniocentesis, and non-invasive prenatal testing (NIPT), which analyzes the pregnant person’s blood for chromosomal changes such as trisomies.
These tests vary in usefulness and risk profile. Invasive procedures like amniocentesis can lead to miscarriage. All can produce false positives, consequently ending in abortions based on incorrect results. Moreover, abortion remains highly stigmatized in many societies—as people who choose it are often judged. However, some prenatal tests can detect conditions requiring immediate medical attention at birth.
“Certain tests are therapy-oriented. If, for instance, a fetal heart defect is detected early, a C-section can be planned to minimize risk,” Lindemann explains. “Those tests make sense.” For Sina, knowing about the omphalocele was crucial: “It gave us time to prepare—to consult more doctors, choose the right hospital, assemble an experienced team, and monitor the pregnancy more closely,” she says. She decided against abortion immediately.
#NoNIPT
“Most prenatal tests generate suspicions that, in our ableist society, often lead to abortion,” says Achtelik. Achtelik and other activists criticize unnecessary prenatal tests, particularly NIPTs—blood tests that estimate the likelihood of trisomies 21, 13, or 18. Since July 1, 2022, Germany’s public health insurance covers NIPT if another test shows abnormalities or if the pregnant person’s “personal situation” justifies it—yet another vague term left undefined.
“It sends a fatal message that insurance pays for it,” says Lindemann. “It implies necessity and reinforces the idea that disability is preventable—and, therefore, undesirable. That’s ableist medical practice.” The alliance #NoNIPT, to which Lindemann belongs, opposes insurance coverage and calls for ethical review boards—including disabled self-advocates—to decide on future test approvals. Activists also point out that NIPT offers no therapeutic benefit.
Activists also criticize that NIPTs don’t offer any medical benefit, because they do not reduce the risks associated with prenatal diagnostics. While NIPTs themselves involve only a blood draw, a positive result for a trisomy is usually followed by invasive procedures for confirmation. “Non-invasive prenatal tests have a relatively high false-positive rate, meaning that invasive tests will also increase—and with them the risks for the pregnant person,” Lindemann explains. At the same time, knowing that a trisomy is present does not lead to any medical treatment or therapy, as trisomies cannot be cured or treated.
“These tests, and the counseling that goes with them, are carried out by gynecologists who usually have had very little contact in their lives with people with, for example, trisomy 21. And most people take this test because they ultimately want to hear that the fetus is healthy. But when they receive a result indicating that the fetus will (likely) be disabled, many of them haven’t yet thought about what they would do in such a situation. And, we very often hear that these pregnant people are immediately given a referral for a termination appointment by their gynecologists,” says Lindemann.
Killing Off Disabled Lives
NIPTs also directly contribute to certain groups—in this case, disabled people—being selected out. In the long term, this means that fewer and fewer disabled children are born. This affects people with Down syndrome, in particular. “Far fewer children with trisomy 21 are already being born than would statistically be expected. In Germany, we can assume that 85 to 90 percent of fetuses with trisomy 21 are aborted. Across Europe, the numbers are slightly lower because abortion laws are more restrictive there. As a result, birth rates are higher,” explains Lindemann. “At the same time, there is no monitoring of what the consequences of NIPT becoming a standard health insurance benefit actually are. Even before it was covered by insurance, the German Association of Gynecologists estimated that around 90 percent of pregnant people were already using the test!” In many countries that offer NIPTs as a standard test, hardly any children with Down syndrome are born today. In Denmark—one of the first countries to introduce NIPTs for all pregnant people, regardless of risk factors—95 percent of all pregnant people choose to terminate, according to The Atlantic. Iceland, according to CBS News, is even closer to a world without people with Down syndrome: since the introduction of the test in 2003, nearly 100 percent of pregnant people choose termination. And the website Gènéthique states that only one child with Down syndrome has been born in Iran in recent years. Similarly alarming figures exist for the UK, the US, and many other countries.
“This selection is not only carried out by medicine, which determines what is considered ‘normal’ and what is not—and then suggests the consequence, an abortion. The examinations and possible consequences are also, in part, demanded by pregnant people, their relatives, and their social environment. The result is eugenics—not state-mandated eugenics, but societal eugenics.” Both medicine and pregnant people, as well as society as a whole, each contribute in their own way—although, not consciously or intentionally, says Silke Koppermann, a retired gynecologist and psychotherapist and a member of the Network Against Selection Through Prenatal Diagnostics and the #NoNIPT alliance. There are no exact figures on how many fetuses are aborted as a result of prenatal diagnostics or specifically due to the detection of a disability via NIPT’s.
And NIPT’s for trisomies may only be the beginning. It is conceivable that in the future there will be many more tests capable of diagnosing a wide range of disabilities in embryos or fetuses. “In a study from Taiwan in which parents of autistic children were surveyed, 53% said they would terminate a future pregnancy if autism were diagnosed prenatally. These are results from surveys about tests that don’t even exist yet,” Lindemann says.
Amelie Defies Predictions
But Sina knows from experience that even the most comprehensive prenatal diagnostics cannot deliver precise predictions, because many of the prenatal forecasts did not come true for Amelie. Amelie is now five years old—a cheerful, bright, and courageous young girl. Little remains noticeable of the many hospital stays in her early years, the countless surgeries, and her rather rough start in life. Amelie is not your stereotypically healthy kid, but she has adapted to her chronic conditions and, for instance, wears the brace she needs for a lateral curvature of her spine all day without complaining, even though it pinches everywhere and gets in the way when she bends or climbs. “Amelie is still tube-fed because she can’t eat enough on her own. Her stomach is so small, and food is absorbed differently,” Sina says. “So yes, we still have a long road ahead of us—with physiotherapy twice a week and probably several more surgeries in the future—but Amelie is doing amazingly well.”
My Body, My Choice
Two years after Amelie’s birth, Sina becomes pregnant again. Because of the omphalocele in her previous pregnancy, she is immediately tested for all kinds of possible conditions this time, and it turns out that the fetus has trisomy 18. Trisomy 18 means that chromosome 18, which normally appears twice, is present a third time. This leads to cognitive and physical disabilities that often result in death before birth or within the first year of life. Before Amelie was born, Sina would likely have chosen to terminate a pregnancy with trisomy 18, but living with Amelie has given her an entirely new perspective. She changes her mind and decides against an abortion. “I have a cognitively typically developing child with minimal motor limitations who has learned to manage her feeding tube and brace and is a very happy kid who can participate in life when given the chance. That is why my decision changed—because I had this basis for making a decision,” Sina says. “You have to be aware that if you choose to terminate, you’re not doing it in the interest of the child. No one can know in advance what the child’s life will be like. These tests do not provide precise predictions, and they certainly say nothing about a child’s quality of life. At the same time, a woman’s autonomy is incredibly important. And it is just as valid to say: I am choosing abortion because I do not feel capable of walking this path,” Sina says.
Everyone with a uterus must be able to decide what happens to their own body. “My body, my choice,” the slogan used worldwide by activists of the Pro-Choice movement to advocate for the right to abortion, does not conflict with the #NoNIPT alliance. Opposing the selection of disabled people does not mean that activists are not also strong defenders of feminist values. “I support the right to terminate a pregnancy if you don’t want to be pregnant; to decide against having a child if you don’t want children. But I don’t think that includes choosing which children you want and which you don’t,” explains Lindemann. “For me, a critical stance on prenatal diagnostics fits poorly with the way much of the Pro-Choice movement currently argues. It is often rejected to even discuss reasons for abortions, because every decision by a woman must be accepted. But that doesn’t work when it comes to prenatal diagnostics, because in the case of a termination after a positive result, the reason is explicit: the pregnant person is afraid of having a disabled child,” says Achtelik. She adds: “There are reasons why people have these fears—most of them have to do with an ableist and hostile environment toward disabled people. If someone cannot imagine having a disabled child at all, and they know this even before becoming pregnant, I would advise them against having biological children: no prenatal diagnostic test in the world can guarantee that you will have a non-disabled child.”
By the way, according to the Federal Statistical Office, congenital disabilities or disabilities that occur within the first year of life are quite rare—only about three percent. Most disabilities are acquired during a person’s lifetime, and that can happen to anyone.
What Needs to Change
Sina’s pregnancy ends abruptly in the 17th week. Because she did not reach the 24th week, she is not allowed to give birth in the delivery ward; instead, she must stay on the general ward and wait for labor to begin. Due to the pandemic, she is alone and her husband is not permitted to be with her. It takes an entire week before she delivers the dead fetus while sitting on a birthing stool—without any support. “We do not make it easy for people to decide in favor of a disabled child, because we live in a society hostile to disabled people, where parents constantly have to fight their way through mountains of bureaucracy and obstacles are placed in their path at every turn. At the same time, most people live in parallel worlds and have no idea what disability actually means,” says Lindemann. Parents who choose to have a disabled child often find themselves largely on their own. Like Sina, they lack support in every area, and going down this path—not just once, but repeatedly—requires immense strength and resources that not all parents have.
Parents of disabled children, for example, face constant battles with funding agencies such as health insurers. There are still very few inclusive schools—and many disabled children continue to be pushed into segregated special schools, which drastically reduces their educational opportunities and their chances of ever finding work in the primary labor market. In reality, obstacles are placed in the way of parents of disabled children in nearly every aspect of daily life. This is despite the fact that inclusion is actually a right guaranteed by the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), to which every person living in a country where the convention has been ratified is entitled. But that applies only in theory. In practice, inclusion is more of a privilege—one that only the parents who can fight for it are able to attain.
Three years later, Noam is born—Amelie’s brother, who does not have a disability. But Sina did not know this until the birth, as she decided against all prenatal diagnostic testing because, by now, one thing is clear to her: there is no disability that would be a reason for her to terminate a pregnancy. “Many parents cannot imagine a disabled life. They lack the basis for making a decision [about abortion], because they do not know what life with a disability—or with a disabled child—is actually like,” Sina explains her personal view. “To create this basis for decision-making, disabled people must be at the center of society! And that has to start very early, for example with inclusive kindergartens! For the children in Amelie’s inclusive kindergarten, things like a feeding tube or a brace are completely normal. And when children learn this early on, they grow into adults who can also handle these issues,” Sina concludes.
*All names in this article have been changed after photos of Amelie were illegally used online to protect the family’s privacy.
