In the wake of the Supreme Court overturning Roe v. Wade, I feel an ominous cloud of governmental reach looming over my work as a neonatologist. Supporting families whose fetuses and babies have severe congenital disabilities—America’s leading cause of infant mortality—requires careful, compassionate, and complex health care. Because access to pregnancy termination for these fetal diagnoses is constricting in many states, the number of babies born annually with congenital disabilities in the U.S.—already at 120,000 per year—is expected to grow. Some neonatologists and bioethicists have long worried that laws that aimed to afford all infants specific legal protections, enacted under Presidents Ronald Reagan, George W. Bush, and Donald Trump, could interfere with our ability to support our patients and their parents in these cases. The current tide of judicial upheaval makes this concern more palpable.
The spectrum of diagnoses encompassed by the term “congenital disabilities” – structural or functional anomalies that occur as the fetus grows and develops – is wide. Treatable diagnoses, such as cleft lip, are distinct from diagnoses pertaining to severely disabled newborns. Some genetic disorders or complex conditions demand nuanced medical plans. Congenital heart disease, for example, may be correctable with surgery but is also the leading cause of birth-defect-associated infant death. Other severe disabilities present concrete prognoses. Anencephaly – absence of parts of the brain and skull – is neither treatable nor curable with modern medicine.
A cornerstone of neonatal care is parental authority, a proxy for the ethical principle of autonomy that grants parents the right to make decisions concerning their children without governmental intervention provided these decisions are in the best interest of their children. Parents’ proxy to make medical decisions for their children underscores pediatric health care. Shared decision making between parents and pediatricians is sacrosanct.
Trusting parents to make medical decisions in the best interests of their children may sound simple. But even routine decisions, such as whether their babies should receive breast milk or formula, or whether their babies should receive vaccinations, are judged and debated. When babies are fragile, unstable, face uncertain recovery, or face futures with severe disabilities, and parents weigh more complex decisions, American history dictates trust in parents further erodes. The moral difficulties of “playing God in the nursery” permeated all branches of federal government and national media in the 1980s.
Baby Doe, born in 1982 in Indiana with Down syndrome, Trisomy 21, and a malformed esophagus, required surgery to allow water and nutrients to reach his stomach. His parents were reportedly swayed by their obstetrician’s recommendations and refused the operation. Moral distress overwhelmed some members of his care team who believed the surgery correcting his esophagus would have allowed him to survive. The Chicago Tribune reported some of his nurses sought psychiatric counseling while one of his physicians debated kidnapping him from the hospital. Courts upheld the parents’ decision. Baby Doe died after six days.
In response, President Reagan’s Administration cited “heightened public concern” surrounding care of disabled newborns. He and his surgeon general Dr. C. Everett Koop issued a rule in 1983 proclaiming a “vigorous federal role” in these cases. Signs hung in nurseries and NICUs advertising “Baby Doe” hotlines, where callers voiced anonymous concerns of perceived neglect in neonatal care. In response, the government would dispatch “Baby Doe” squads to revisit agonizing decisions of parents and doctors. The American Hospital Association and other medical organizations argued the hotlines and squads were disruptive and unwarranted. While their lawsuit worked its way to the Supreme Court, Baby Jane Doe became a test case.
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Baby Jane Doe, born in 1983 in New York, had a constellation of severe congenital disabilities: spina bifida, hydrocephalus, and microcephaly. This meant she would have serious medical complications including paralysis and epilepsy. Her parents and doctors concluded she would be severely disabled. Her parents declined to surgically repair her spine. Right-to-life advocates challenged her parents’ decision and put Baby Jane Doe in the national spotlight. Her case garnered attention from the Vatican. Courts upheld the parents’ decision not to have surgery. Eventually, her spinal defect closed on its own.
The Supreme Court ultimately struck down the initial “Baby Doe” rules and their associated hotline and squads. But in 1984, Congress enacted an amendment to the Child Abuse and Neglect Prevention and Treatment Act that remains in place to this day. This statute requires all newborns to receive aggressive medical treatment with some extreme caveats noted.
The uncertainty inherent when babies are born with congenital disabilities can be daunting. Physicians strive to present parents with balanced information. Sometimes staff and families disagree on the best way forward. The Baby Doe cases underscored a need to help families and staff weigh complicated cases and process disagreements surrounding patient care. This spurred the bioethics movement. Its associated ethics committees navigate complex decisions with a type of care and consideration no legal construct could mimic.
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I carry many cases of severe congenital disabilities with me. Because the privilege in helping people grapple with the hard truth that their parenting journey will diverge at the outset from its expected path means participating in intimate conversations that fade but never vanish. I catch glimpses of people who look like my former patients’ parents on crowded street corners or at my sons’ school events, and these glimpses bring me back to those bedsides.
To help families delineate dignified goals of care for fetuses and babies who have diverse congenital disabilities, to do this with reverence, is a practiced skill at which I am continually struggling. It means acknowledging within myself all I do not know and recognizing my goal is to inform and listen, not to judge. It means making space to process. It means not recoiling at the wide range of emotions parents display. It means understanding how intensive care can feel relentless or aimless or futile in the face of some congenital disabilities. It means acknowledging how intensive care can provide hope and a way forward for others. It means asking ethicists for guidance.
While ethics committees steered the moral compass in NICUs over four decades since the Baby Doe era, the political landscape evolved. Congress passed the Born-Alive Infants Protection Act in 2002 clarifying that any infant born with signs of life, at any stage of development, should be provided legal status and assessment by a medical provider. In 2005, the government again threatened to investigate anyone withholding medical care from infants and to defund hospitals permitting this practice. In 2008, Congress passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act mandating provision of scientifically sound information and support services for parents whose fetuses and babies were diagnosed with congenital disabilities. In 2020, President Trump issued an executive order proclaiming anew that all infants born alive have the same dignity and rights as other individuals regardless of disability.
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Indeed, every infant born alive should unambiguously be afforded the dignity of medical care. Medical care, however, is myriad in its forms and interventions. When newborns have life-limiting diagnoses, including some extreme congenital disabilities, palliative care can be warranted. This spring, guidance from the American Academy of Pediatrics reemphasized the importance of shared decision making with parents in pediatric palliative care. Perinatal palliative-care programs aim to inform parents about their babies’ diagnoses and possible paths forward while also providing psychological services and grief support. Many perinatal hospice organizations grew in response to an outcry from parents who had lost babies without healing outlets. Decades of advocacy by parents diminished the paternalistic decisions of physicians in every avenue of pediatric medical care including end-of-life care.
Whether the current wave of legal turbulence will creep into neonatal care and undermine parents and bioethicists is unknown. We have not seen a shift so far, but the ripple effects of Roe’s revocation have me and many others who care for newborns nervous. Because no law or judge can correct congenital disabilities, nor can laws keep pace with medical progress. Fragile babies rely on others to advocate for them and give voice to their lives. No one is more equipped for this role than their parents.
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