By Ann Neumann

“…he and his wife have determined that it is in the best interest of the Infant Doe and the two children who are at home and their family entity as a whole, that the course of treatment prescribed by Doctor Owens should be followed…” —Circuit court for the County of Monroe, State of Indiana, “In the Matter of the Treatment and Care of Infant Doe,” 1982

Kurt Kondrich was 40, a 20-year veteran of the police force in Upper St. Clair township ten miles south of Pittsburgh, when his second child, Chloe, was born. As she took her first breaths, the doctor diagnosed that she had Down syndrome, one of the most common genetic disorders in the country.

Chloe’s diagnosis was a blow to Kondrich and his wife, Margie, who had a four year-old son at the time. “When Chloe was born, the doctors told us all the things Chloe couldn’t do,” Kurt told a Pittsburgh area newspaper last year, “Then we saw the specialists, and they started telling us all the things that Chloe will do: She’s going to play Frisbee, she’s going to run. They were a light in the darkness. It’s so important for parents to hear that.”

To help other families with Down syndrome, Kurt spearheaded a new bill that would require the Pennsylvania Department of Health to provide parents with more adequate information about Down syndrome. Known as the Down Syndrome Prenatal Education Act, it was passed in Pennsylvania last year (50-0 vote in the Senate; 196-4 in the House). The bill may seem innocuous, even a great achievement—certainly it did to most regional reporters at the time, who billed Kondrich’s effort a “labor of love.” Then you catch that Prenatal in the bill’s title. Kurt, whose brother is a Roman Catholic deacon, has been vocal about why he took up activism: to prevent abortions.

“When my daughter was born, I was deeply disturbed by the fact that they kill off these kids. Chloe is nothing but joy, and she has already brought more good to this world in 11 years than most people do in 80 or 90 years,” he told the Catholic Diocese of Pittsburgh website. Bishop David Zubik told the site, ”People with Down syndrome have a special place in my heart. They don’t hide their feelings. People with Down syndrome are a gift to society. They teach us the finer things in life. They teach us that, as Antoine de Saint-Euxpery [sic] wrote in ‘The Little Prince,’ it is only with the heart that one can see rightly.”

Kondrich and his allies have employed a rhetorical dichotomy that doesn’t actually exist. By claiming that one either cares about the lives of the disabled, or wishes them dead, gives cover to anti-abortion activists who ideologically oppose women’s constitutional right to make the best decisions for their health and families. It immediately characterizes women and doctors as corrupt, immoral, deadly. It asserts that laws must be passed to protect society from them.

***

On Good Friday in 1982, at Bloomington Hospital in Indiana, a woman, forever known in court documents as Jane Doe, was giving birth. Her husband, her doctor, Walter Owens, and a nurse were with her. It was a routine birth. Baby Doe was born at 8:19 pm and Owens placed him on his mother’s stomach. Immediately “Owens saw he had a catastrophe on his hands,” wrote The Chicago Tribune’s Jeff Lyon two years later. “You look beautiful,” Mrs. Doe told her newborn, according to Lyon. “You look different from my other two, but I love you anyway.” Dr. Owen recognized the signs of Down syndrome. While he delivered the placenta, a nurse cleaned the child and attempted to clear his esophagus of amniotic fluid but was unable to insert the catheter. The child had what’s called an esophageal artesia, a physical deformity that complicated eating and breathing.

Owens consulted with two other doctors. All three met with the husband and wife to explain the child’s defects. One suggested Baby Doe be transferred to a nearby hospital for surgery. The second concurred, saying that the baby would die without surgery. Owens, who knew that the procedure would be painful and that subsequent operations would likely be required, all of which would not address the child’s Down syndrome, suggested that they had an alternative: they could refuse consent for the surgery and let the child die. At 10 pm the parents told the three doctors that they had decided not to treat the child. One doctor threatened a court order and called the inaction of the parents infanticide. Owens and the parents decided that the child should be kept comfortable. The Does got a lawyer. The hospital’s attorney, who feared prosecution, decided to consult a judge, who could order treatment and take custody away from the parents. The judge, lawyers, doctors, and parents all met in a storage room on the hospital’s sixth floor that night. Writes Lyon:

The questions to be resolved were of a significance strangely out of proportion to the surroundings–the makeshift conference room with its ring of chairs. At issue was nothing less than whether parents ever have the right to refuse live-saving treatment for their children and whether a life of handicap is so abysmal as to warrant its termination at birth.

Only rarely in American jurisprudence had such questions been raised. On the few occasions on which they had, the courts had almost invariably ruled against the parents and in favor of life. But in those instances the doctors had always been lined up against the parents.

 In Bloomington, however, it was a different matter. There existed a strong–one might say vehement–difference of clinical opinion as to what the best course of treatment was. An experienced and much-esteemed physician, Dr. Walter Owens, was willing to go on record with the medical judgment that the child was better off dead.

The judge ruled that Mr. and Mrs. Doe could let the child die.

The nurses revolted. The Does, who had two other children at home, hired private nurses. Catholics, they had the child blessed and they named him Walter after Dr. Owens. Under pressure from local right-to-life organizations, the judge asked the County Department of Public Welfare to review his decision. The committee agreed with his ruling. Owens, made uneasy by phone calls from the hospital, decided to sit with the child to prevent intervention. As he did, two doctors attempted to intubate and kidnap the child. Baby Doe died six days after he was born. Writes Lyon, “Cause of death: chemical pneumonia, due to the regurgitation of his own stomach acid,” a result of the esophageal artesia.

On October 9, 1984, the Baby Doe Amendment to the federal Child Abuse Law was passed, making it illegal to withhold fluids, food, and medically indicated treatment from a newborn. Instead of establishing the initial plan for anonymous hotlines in every hospital that could be used to report neglect, the law ultimately placed the responsibility for reporting on hospital ethics boards, with the threat that hospitals lose federal funding if they don’t comply.

“Currently, if a case involves parents or their doctors choosing to withhold treatment,” writes Jack Resnick at The Embryo Project Encyclopedia at Arizona State University, “the review boards are obligated to report the case to child services as an instance of medical neglect. Under the rules, withholding treatment is only permissible if the newborn is irreversibly comatose, if treatment would only prolong its death, or if treatment would be inhumane. Furthermore, the law also holds that a physician’s decision for neonatal care cannot be based on quality of life, or other abstract concepts.”

Two years after the death of Baby Doe, Mrs. Doe gave birth to a healthy baby girl.

***

Down syndrome, also known as trisomy 21, occurs when patients have a whole or partial third copy of chromosome 21. Those with Down syndrome experience delayed development of physical abilities, permanent intellectual disabilities, and exhibit distinct physical features. John Langdon Down, who first described Down syndrome in 1866, “referred to his subjects as Mongoloids or Mongoloid idiots on the basis that their faces, with slightly slanted eyes, resembled those of people from Mongolia,” writes Andrew Solomon in Far from the Tree.” Those with Down syndrome once lived only to the age nine or ten, but over the decades, medical advancements have lengthened life expectancy to fifty or sixty years. Yet Down syndrome is a disorder with a broad outline; some patients are born with additional birth defects, epilepsy, or heart disease, some require extensive medical treatment throughout their lives. Others are able to live independently and hold jobs.

Currently, blood screening tests are used in the first or second trimester of a pregnancy to determine whether a fetus has Down syndrome or other defects, but they are not definitive and can be inaccurate. A positive screening for Down syndrome (particularly when a mother is over 35, there’s a history of disability in the family, or she has a previous child with a disability) often leads a doctor to recommend an invasive screening—amniocentesis, in which a large needle is inserted into the woman’s belly. This test carries risks like miscarriage (1%) and is used with caution. Yet many states have banned abortion after 20 weeks (second trimester); some allow exceptions for the mental and physical endangerment of the woman. Some states, motivated by anti-abortion sentiment, have even banned abortion 20 weeks after fertilization, a time that is well before infant viability and controversially outside Roe v Wade’s restrictions. But new testing procedures are quickly increasing the accuracy of early detection, without the invasiveness.

Even still, with a positive diagnosis of Down syndrome, it’s difficult for families to comprehend what life with a disabled child would be like. Amy Julia Becker wrote in a 2010 editorial for the New York Times’ Motherlode blog that it took her two years to potty train her daughter, Penny, who has Down syndrome. It took only one month to potty train her other child, who does not. She also notes that Penny required countless doctor visits, physical therapy sessions and independent exercises, services that she readily acknowledges she had the time and resources to take on.

In comments to Becker’s article, most parents of children with Down syndrome applaud her bravery. “We need to fully embrace diversity!” wrote Call me Mom. “This embryo is a unique human life in its earliest stage of development. This is a fact, not an opinion.” But some attest to the long-term challenges like the financial costs of life-long care, the horrors of institutionalization, fears of what will happen when they die before their disabled child, and the effect that such use of time and resources have on other children. Katz in Tennessee wrote: “For 10 years, in our home, that caregiver was my mother, and the incredible difficulties my brother’s care represented broke her spirit, resulted in a lengthy period of depression in middle age, and had lasting repercussion[s].” Katz ultimately calls her brother a blessing. Many posts express a deep distrust and disdain for doctors and the medical profession. Many comments shame women who make the decision to abort; faith in God’s plan (and our moral obligations) is a common refrain.

But there’s something else striking about the comments: many don’t consider this a woman’s decision, but society’s. As though one bright line—no abortions for Down syndrome, ever—works for all women and their families. Any concerns for financial and emotional challenge are swept under the pretty rug of sentimentality. It’s assumed that biology (something akin to God’s wisdom) is incontrovertible. That women are mothers first, that the standard is unconditional love, that the privacy of a decision only exists if that decision is the one for birth. So few commenters ask what quality of life means or acknowledge that it matters; no one considers what is wrong—or right—with eradicating a defect; accusations of infanticide go unquestioned and undefined.

The most compelling and prevalent ideas about Down syndrome are deeply entrenched in conservative norms: a mother’s unconditional love; women are incapable of making their own family planning decisions; hardship is a blessing; abortion is wrong. Every socially conservative assumption about women and their traditional roles is enforced by the claim that women who wish to decide for themselves are killers.

***

Tamar Lewin of The New York Times reported in August that between 60 and 90 percent of all fetuses diagnosed with Down syndrome are aborted. Kondrich, who consistently emphasizes the 90% statistic in his advocacy, has embedded his anti-abortion activism in the bodies of disabled children. And at the cost of women’s rights.

But the Pennsylvania bill, called Chloe’s Law, is not new or unique. Lewin notes that seven states (Arizona, Kansas, North Carolina, North Dakota, Pennsylvania, and South Dakota) currently have laws that ban abortions based on gender selection; some also include race. And in 2013, North Dakota “made it illegal for a doctor to perform an abortion because of fetal anomalies, including Down syndrome,” Lewin writes.

When seen against the backdrop of a glut of state-level bills that impose increasing restrictions and delays on abortion seekers and providers, Chloe’s bill is yet another attempt to curtail the constitutional right to abortion. This fall, the legislature in Ohio—where women are already required to receive an ultrasound and asked if they wish to view an image of the fetus before an abortion—is expected to pass a law like North Dakota’s. Two-thirds of the lawmakers in both houses are endorsed by the National Right to Life Committee. Abortion rights advocates say such laws are unconstitutional, both sides admit that they will be nearly impossible to enforce.

But it’s the use of disability that makes the laws in North Dakota, Pennsylvania and Ohio a new phase in anti-abortion legislation. In my research on end of life issues, I’ve documented that Bobby Schindler, the brother of Terri Schiavo and director of the Terri Schiavo Life & Hope Network, has long called himself a disability rights advocate, stating that his sister, who was in a persistent vegetative state with no chance of recovery, was “severely brain damaged.” For more than a decade, he’s been a regular speaker at “pro-life” events across the country.

Now anti-abortion organizations, both at the state and federal level, are bringing disability rights groups on board for their cause—a move that gives anti-choice legislators cover. To outside observers, this rhetorical and activist move may seem rights-focused and humane. What’s so bad about information? About raising awareness for the disabled?

To bioethicists, doctors and reproductive rights activists, however, it’s a new way to inject ideological laws into the patient-doctor relationship. Under the guise of disability rights, these laws target women with shame, distrust and intrusive restrictions. Kellie Copeland, executive director of NARAL Pro-Choice Ohio told Lewin, “This is interference with a medical decision following a complicated diagnosis. For us, it comes down to who makes the decision and who’s going to have to live with it. Not knowing the family and the circumstances, the legislature can’t possibly take into account all the factors involved.” Arvind Suresh at the Genetic Literacy Project wrote in August, “Debate about what information must be given to patients was active even before these laws were passed–and they centered around one thing, abortion.” Other criticism of the bills is that the materials provided by the states are not standardized and that they fail to cover the spectrum of Down syndrome (thus painting a rosier picture for parents than may be expected), and that they upend the ethical standards for genetics counselors.

In an August article titled, “Chloe’s Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing,” for the journal PLOS Biology, bioethicist Arthur Caplan wrote that advocates are succeeding in “ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.” Such laws are getting ahead of advanced genetic testing that is expected to detect defects in fetuses earlier and less invasively in the coming years.

As women continue to have children at older ages, the chance of Down syndrome increases. According to the National Down Syndrome Society, the rate of infants born with Down syndrome is 1 in 2,000 for mothers at the age of 20; 1 in 1,000 by age 28; 1 in 200 by age 38; and 1 in 100 by the age of 40. By getting ahead of more advanced testing and the increasing age of mothers, these laws escalate the discussion of a woman’s privacy rights to an all-out concern for what anti-abortion activists see as a eugenics-like effort to eliminate those with Down syndrome.

Articles have appeared at The New York Post and Huffington Post with titles like, “The end of Down syndrome,” and “In Defense of Down Syndrome Children…Like My Son,” claiming that soon children will no longer be born with the disease, a tragedy to many parents who fear that what little support and understanding society now provides will evaporate. “It’s no secret. People with Down syndrome have been targeted for extinction,” wrote Gabe Lyons at the Huffington Post in 2012.

Chloe’s father, Kurt Kondrich, who writes a column at the hyper-conservative website, RenewAmerica, wrote a post last year titled, “The case for a Prenatal Endangered Species Act (PESA).” It closed with, “As genetic testing rapidly advances isn’t it time we pass a Prenatal Endangered Species Act (PESA) to ensure the instrument of abortion does not cause the extinction of individuals our misguided world labels ‘defective’? One day soon the endangered species categories may include autism, ADHD, OCD, depression, dyslexia, shortness, brown eyes, and the list goes on and on.”

Even otherwise equality-driven advocates are susceptible to the claim that fewer Down syndrome babies means fewer rights and resources for the disabled population. Andrew Solomon, author of the award winning Far from the Tree, has reinforced this idea. In the book he writes, “The more such pregnancies are terminated, the greater the chance that more will be terminated. Accommodations are contingent on population; only the ubiquity of disability keeps the disability rights conversation alive at all.” It’s an uncomfortable logic—one that skips over the diversity of disability and the disturbing lack of available resources for the current population.

***

The legacy of the Baby Doe case is vast and confounding, but it is durable. The assertion that eugenics-minded doctors and infanticidal parents, unwilling to raise
imperfect children, must be stopped has entranced many “pro-life” groups. It’s an assertion that caused the passage of the Born-Alive Infants Protection Act by President George W. Bush in 2002, against the protestations of doctors and reproductive rights advocates that it confers the coveted status of personhood on fetuses, in contravention of Roe v Wade. The legacy of Baby Doe can be seen in the slippage from a discussion of when life begins to an assertion that aborting fetuses diagnosed with Down syndrome is anti-Down syndrome lives, an assertion that refutes the potentiality of a fetus and its current legislated status as not yet a living person. It can be seen in the whitewashing of Pennsylvania’s law as pro-disability when it’s really anti-women. About Pennsylvania’s new law, Kondrich said, “This isn’t a partisan law. It’s not a pro-choice or pro-life law. It’s a pro-information law.” Yet in other conservative or Catholic media, he rails against abortion.*

The legacy of Baby Doe can be seen in the parade of children with Down syndrome on political stages (see Sarah Palin and Rick Santorum**), like adorable and exonerating props, as their parents pursue policies that mean certain hardship for those with Down syndrome and their families. Instead of advocating for laws and services that enable the lives of the disabled, they turn disabled children into weapons against the rights of women. It’s a shameful advocacy that legislates one group’s autonomy against another’s, the lives of women against those of their fetuses. But our history of shaming women, their bodies and their decisions is hard to escape.

October is Down syndrome awareness month. It’s 25 years since the passage of the American with Disabilities Act and our social services—and social attitudes—regarding the disabled are still a gross disaster. Disability, particularly Down syndrome, may be the perfect new wedge issue in the eyes of some, but the lives of those families affected by Down syndrome would be better served in other ways. Ways that legitimately support the disabled community and don’t undermine women’s health and decisions.

***

*Journalists, do your research!

**Santorum’s child, Bella, has been diagnosed with Trisomy 18, not Down syndrome.

Past “The Patient Body” columns:

Memorials and Body Counts

How Ethics Saved the Life of Medicine

Impossible Purity

In the Blood

Pathological Sex

Choosing Childlessness

Old Man in Winter

Oh Canada!

End-of-Life Books, 2014

The Great Organ Shortage

Tending to One Another

Moral Highs and Lows

Old Philosophical Certainties

On Suicide

Reading HuffPo’s “Hospice, Inc.”

The End of Eating

Wakeful Unawareness

Faith, a Chronic Condition

A Special Sustaining Power

Your Ethical and Religious Directives

Hospitals and the Pretense of Charity

A Closely Held Business

What’s a Kidney Worth

An Irresistible Force

***

Ann Neumann is a contributing editor at The Revealer and Guernica magazine and a visiting scholar at The Center for Religion and Media, NYU. Neumann‘s book, The Good Death, will be published by Beacon Press in February 2016.