ItThe Supreme Court was overturned. Roe V. WadeAs a neonatologist, there is a cloud over me that I sense is looming. 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. Many bioethicists and neonatologists have been concerned for years that the laws that were passed under Donald Trump, George W. Bush and Ronald Reagan would limit our ability to provide support to our patients. This concern is made more acute by the current wave of judicial turmoil.
The spectrum of diagnoses encompassed by the term “congenital disabilities” – structural or functional anomalies that occur as the fetus grows and develops – is wide. Cleft lips, which can be treated, is different from those affecting severely disabled infants. Nuanced medical plans are required for complex genetic conditions or other complicated disorders. Congenital heart disease, for example, may be correctable with surgery but is also the leading cause of birth-defect-associated infant death. Others severe disabilities have specific prognoses. Anencephaly – absence of parts of the brain and skull – is neither treatable nor curable with modern medicine.
Parental authority is a cornerstone of neonatal healthcare. This proxy represents the ethical principle autonomy and allows parents to decide what is best for their child. Parents’ proxy to make medical decisions for their children underscores pediatric health care. The shared decision making of parents and pediatricians should be considered sacred.
It may seem simple to trust parents with medical decisions that are in the best interest of their children. It is not easy to make routine medical decisions such as whether their baby should have breast milk or formula. American history shows that parents lose trust when their babies are in danger, fragile and unstable. The moral difficulties of “playing God in the nursery” permeated all branches of federal government and national media in the 1980s.
Baby Doe was born in Indiana, 1982. His parents were reportedly swayed by their obstetrician’s recommendations and refused the operation. Some members of his medical team were in moral distress and believed that a surgery to correct his esophageal problems would have saved his life. Chicago Tribune Reports state that his nurses sought out psychiatric counselling while his physician debated the idea of kidnapping him. 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. American Hospital Association (AHA) and other medical groups argued that hotlines and squads were unnecessary and incontinental. Baby Jane Doe was a test case that they brought to the Supreme Court.
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Baby Jane Doe was born in New York in 1983. She had severe congenital disabilities, including spina bifida and hydrocephalus. She would be suffering from severe medical conditions, including epilepsy and paralysis. Both her parents and doctors believed she was severely handicapped. Her parents refused to operate on her spine. Right-to-life advocates challenged her parents’ decision and put Baby Jane Doe in the national spotlight. Vatican officials were particularly impressed by her case. Courts upheld the parents’ decision not to have surgery. Her spinal defect was eventually closed by her parents.
The Supreme Court ultimately struck down the initial “Baby Doe” rules and their associated hotline and squads. In 1984 however, Congress passed an amendment to Child Abuse and Neglect Prevention and Treatment Act. It remains in force to this day. The law requires that all newborns receive medical attention with certain caveats.
Congenital disabilities are a source of uncertainty for babies. This can make it difficult to know what to do. Parents should be provided with balanced information by doctors. Family members and staff sometimes have different opinions about how to proceed. Baby Doe case highlights the importance of helping families and staff to weigh complex cases and resolve disagreements around patient care. The bioethics movement was born from this. The associated ethics committees help with complex decisions, providing care and consideration that no legal structure could match.
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I am able to carry with me many severe cases of congenital disabilities. It is a privilege to help people deal with the fact that their parenting path will differ from the expected. This means I am able to have intimate conversations which fade, but not disappear. 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.
It is difficult to help families set dignified goals for care of babies and fetuses with diverse congenital disabilities. I continue to struggle at this skill. Recognizing all that I don’t know is a part of this process. It also means acknowledging my limitations and knowing that my goal is not to judge but to inform. This means allowing yourself to be open and allow for others to do the same. This means that parents should not be afraid to express their emotions. Understanding how intense care may feel ineffective, futile or ineffective when faced with some congenital disabilities is key. This means accepting that intensive care may offer hope for others and provide a path forward. This means that you should seek guidance from ethicists.
Over the four-decades since Baby Doe, NICUs have been governed by ethics committees. But the political landscape has changed. In 2002, Congress approved the Born-Alive Infants Protection Act. This law clarified that all infants born with signs and symptoms of life at any age should have legal status. It also required that a physician evaluate them. Again, in 2005 the government threatened to probe anyone refusing to provide medical attention to infants. They also defunded hospitals that permitted this practice. Congress approved the Prenatally and Postnatally Diagnosed Condition Awareness Act in 2008. This law required parents to provide scientifically valid information and support services to babies and fetuses with disabilities. Trump’s executive order of 2020 declared that infants who are born alive will have equal dignity and rights to all other people, regardless how disabled they may be.
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Each infant should, in fact, be given the dignity and respect of medical treatment. There are many types and methods of medical care. Palliative care is warranted when newborns are diagnosed with life-threatening conditions, such as some severe congenital disabilities. American Academy of Pediatrics guidance this spring emphasized the importance of parents being involved in decisions regarding pediatric palliative treatment. Perinatal palliative-care programs aim to inform parents about their babies’ diagnoses and possible paths forward while also providing psychological services and grief support. Parents who were unable to find healing for their children caused a lot of perinatal hospice associations to grow. The paternalistic decision-making of doctors regarding pediatric care has been weakened over the years by advocacy from parents.
It is not clear if the current wave in legal turmoil will affect neonatal care or undermine bioethicists and parents. While we have not witnessed a significant shift, ripples of the current legal turbulence are being seen. Roe’s revocation have me and many others who care for newborns nervous. Congenital disabilities cannot be corrected by law and judge. Laws also can’t keep up with medical advancements. Children with disabilities are dependent on their families to be advocates and to give them a voice. Parents are the best equipped for this job.
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