On many levels, the United States is a land that is solicitous toward disability. Over the past half century, it has adopted national legislation to render public services and private establishments accessible to people with a wide range of conditions. Everything from curbs to crosswalks to shop entrances has been rendered safer for people in wheelchairs or with vision and hearing conditions. Access to education, health care, and employment have seen improvements, with resulting increases in lifespan. Special athletic competitions (thankfully without having fully able-bodied people insisting they have a right to compete) have become community staples. Heroes like Heisman Trophy winner Tim Tebow have emerged, transforming public perception and celebrating the lives of the disabled, including individuals with Down syndrome.

Despite these advances in social and medical outcomes for the disabled, other trends have become established, contradicting a positive narrative and limiting horizons of hope. In March 2022, a report from the Republican staff of the Congressional Joint Economic Committee estimated the social costs imposed on society from the abortion of children with Down syndrome as a result of the expansion of noninvasive prenatal testing (NIPT). This testing (not always accurately) can potentially identify the presence of a health concern. According to the report, chaired by Utah Senator Mike Lee (R), the use of NIPT as a screening tool has contributed to the tragic statistic that an estimated 67% of babies diagnosed prenatally with Down syndrome are aborted in the United States.

The toll is even higher in other nations. A figure reported by the National Health Service (NHS) in the United Kingdom in 2021 found that 87.26% of babies prenatally diagnosed as having Down syndrome were aborted. A compelling report from CBS News nearly a decade ago asked the question, “What Kind of Society Do You Want to Live In?” Reporters Julian Quinones and Arijeta Lajka documented how the near universality of prenatal screening in Iceland had led to the “near eradication” of Down syndrome in the island nation. The story is poignant and empathetic to these children, as well as to the fears of families that receive such a diagnosis, but the starkness of the language still masks to a degree the cruelty at work — after all, it is not Down syndrome that is being eradicated by these means but the human beings who have it. The starkness would be clearer if the eradication of people with malaria were being discussed.

For a time, it seemed as if cultural progress would take the lead in reducing society’s tendency to isolate or abandon babies with genetic maladies. In the 1960s, Eunice Kennedy Shriver founded the Special Olympics to encourage opportunities for young people with physical and intellectual disabilities to compete in sports at all levels of society. The attendant publicity and flood of positive stories about the triumphs and camaraderie of these children was a key factor in growing recognition of the dignity and equality of these boys and girls. In 1984, at a ceremony in which he also honored assassinated Egyptian President Anwar Sadat and the late Jackie Robinson, Ronald Reagan bestowed the Presidential Medal of Freedom on Mrs. Shriver. In his prepared remarks, he said of her, “with enormous conviction and unrelenting effort, Eunice Kennedy Shriver has labored on behalf of America’s least powerful people ... from creating day camps to establishing research centers to the founding of the Special Olympics, her decency and goodness have touched the lives of many[.]”

Five years later, the first television series featuring a major character with Down syndrome premiered to great popular and critical acclaim on ABC. With far fewer networks than today, the program commanded a wide audience. It ran from 1989 to 1993 and was the first of a number of programs to feature similar characters and to humanize people who have been subject to so much mistreatment through the decades. This trend continues with stellar films like “The Peanut Butter Falcon” and contemporary comedians like Shane Gillis, who has an uncle with Down syndrome and often includes his story in his shows.

Perhaps even more important has been the work of the Harvard- and Massachusetts General Hospital-based Dr. Brian Skotko, who has spent his career promoting the well-being of children with these conditions and documenting their happiness and accomplishments. A key analysis of survey results Dr. Skotko and colleagues published in 2011 in the American Journal of Medical Genetics found that “Among those surveyed, nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% [of] people with DS expressed love for their families, and 97% liked their brothers and sisters.”

These are facts, the survey showed, that children with Down syndrome very much want their parents and the public to know. As Skotko and his coauthors wrote, “People with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.”

Many parents do not choose NIPT, and thousands of children with Down syndrome are born each year in America, though far fewer than would be expected if each such pregnancy was welcomed and each baby protected. A November 2024 estimate from the U.S. Centers for Disease Control asserted that some 5,700 children with Down syndrome are born in the United States each year. The 2022 Supreme Court decision in Dobbs v. Jackson Women’s Health Organization restored the ability of the states and federal government to legislate protections for the right to life, including the unborn with fetal concerns. Still, many states today include exceptions in their abortion laws that allow the destruction of these children, with limits around 24 to 26 weeks or no gestational limit at all. Some states require that the fetal condition involved be “lethal,” that is, predicted to result in death soon after birth. Britain’s National Health Services records the number of such abortions in the United Kingdom, but precise figures are harder to derive in the United States’ diffuse health care systems.

Protecting more of these children in our country requires renewed effort to support families as soon as possible after they receive a diagnosis of a fetal condition. An exemplary new effort in this regard is being led by Dr. Robin Pierucci, a Clinical Assistant Professor in the Department of Pediatric and Adolescent Medicine at Western Michigan University. A neonatologist who, after 25 years, stepped back from full-time practice, she began working last year with the nonprofit group Voice for the Voiceless in Arizona, an organization devoted to finding ways to promote comprehensive support for motherhood in America. The effort has led to the formation of Navigating Fetal Concerns, which Dr. Pierucci helms with the intention of reaching parents who have received an ominous fetal screening test with what she calls “compassionate guidance that is informed by medical data.” This care is delivered free of charge and provides personalized support to address complex diagnoses.

Dr. Pierucci notes how often the delivery of even a suspected adverse fetal diagnosis is accompanied by an instant recommendation of termination, which in itself can be traumatic to the parents. Her creed, she explains, is that “a newborn’s first and primary diagnosis is, it’s a baby.”

In testimony before the U.S. Senate on the Born Alive Infant Protection Act in 2020, Dr. Pierucci elaborated:

“All other diagnoses (prematurity, respiratory distress, sepsis, etc.) are secondary and never negate the first one. Because of their preeminent diagnosis, (human baby), we are always obligated to care, whether or not we have the ability to heal. This means that all human babies who are born alive are our patients and as such, medical personnel should be ready to either directly provide the medical standard of care or be prepared to stabilize the baby until a team with more advanced training arrives.”

In today’s challenging climate for protection of the unborn despite so many advances in care for the disabled and successful interventions earlier in pregnancy, efforts like Navigating Fetal Concerns are more urgent than ever. Dr. Pierucci concedes that in the current environment, pro-choice medical groups like the American College of Obstetricians and Gynecologists appear to have won a victory that termination of these vulnerable babies is “women’s health care.” A revolution in reverse will be no easy cause to win. But she insists that “every life is inherently valuable.” She seeks outcomes where every child she helps “never knew a nanosecond where they did not know they were loved.” If she succeeds, a growing network of passionate medical personnel will be available to answer every call from alarmed parents who have received news they did not expect.

Prevalent as it may be, even ubiquitous in some nations, every abortion of a child like this is not merely a violation of the Hippocratic tradition, but a contradiction of medicine itself. It is a lethal act visited upon individuals identified as having a disease, who are then rendered synonymous with their malady. It is a deadly verdict, the very end of care. Heroes like Dr. Robin Pierucci are rising up to mark out another path.