9.3: Case Study 2 - Social Darwinism and the Medical Question of "Defective" Children

In 1915, Chicago, Illinois physician Dr. Harry J. Haiselden publicly committed the “passive killing[21]” of newly born “Baby Bollinger” who was considered to be defective due to the fusion of his kidneys, underdeveloped skin on his shoulders, a partially developed coccyx, and no right ear.[22] According to Haiselden and the Chicago Medical society ethics committee, he acted within his moral and ethical rights—relative to advising Bollinger’s mother to not surgically intervene and in choosing not to provide potentially lifesaving surgical care to the infant.[23] Soon after the Bollinger case, a newborn named Grace Werder was also passively killed—due to the presence of water tumors, paraplegia, and hydrocephaly. The attending physician concluded that “Baby Werder” would have not had proper moral or mental functioning because of her condition and as such was denied surgical intervention and died four days after birth.[24] In response to the overwhelming medical and public support, Haiselden developed and starred in a fictional accounting of his experiences (and decision-making processes) in the 1917 film titled “The Black Stork.” The film aimed at educating the public of the potential social, physiological, and personal harms of allowing a “defective” child to live beyond birth.[25]

The idea of passively killing children with congenital defects continued into the 1980’s with the death of “Baby Doe.” “Baby Doe” was born in 1982, with Down Syndrome and an esophagus that was separated from his stomach. Due to his condition, his inability to absorb food, and his fifty-percent survival rate, the attending physician suggested that the parents withhold surgery—thus allowing “Baby Doe” to die of natural causes.[26] Several of the hospital’s pediatricians and attorneys disagreed with this assessment and sued the parents on the basis of child neglect. However, within one week of birth and before a ruling could be made, “Baby Doe” died of pneumonia and dehydration.[27] Public interest in the ethics of the Doe case led to the development of Baby Doe Rules (and Baby Doe Squads made up of state child protective agents and officials from Health and Human Services) that were tasked with ensuring that federally funded institutions provide treatment to all babies with congenital defects or handicaps (regardless of the advice of the parents or physicians) or risk being defunded.

With the birth of “Baby Jane Doe,” in 1983, however, the question of medical neglect v. parental neglect and the reach of the government fueled public debate when the baby’s parents refused surgical treatment of their daughter’s hydrocephaly and spina bifida.[28] There were also several legal cases from non-familial members of the public and unassociated lawyers. Over time, the parents of “Baby Jane Doe” won the right to be the sole decision makers of their child’s medical treatment. Within one year, the spina bifida had healed naturally and the parents agreed to surgical treatment to treat her hydrocephaly.[29] The last known interview of “Baby Jane Doe” occurred in 2013 at her thirtieth birthday party.[30] Although she has some physical and cognitive delays, she is otherwise healthy.

Several other court cases, including the American Academy of Pediatrics v Heckler, Weber v. Stony Brook Hospital,[31] The United States v. University Hospital, and Bowen, Secretary of Health and Human Services v. American Hospital Association were all in response to the “Doe” cases, the governmental response to the parents’ and physicians decision, whether or not the government should be allowed to make medical decisions for someone, and the amount of access non-hospital based institutions should have to one’s medical records. The overarching question, however, remained whether or not children with congenital sickness or diseases were perceived as being fit (in the sense of Darwinian fitness) for society—and thus whether or not they represented reproductive success— and who should be allowed to make that decision. Medical resource allocation, perceived health and wellbeing, and the child’s presumed quality of life were all tied into that general idea—a set of ideas that have continued from the 19^th century into the 21^st century.[32] Thus, the notion of customary medical care, the medical rights of children, the question of reproductive success, and the role of the government in discerning the reproductive, fundamental, and/or familial rights of the parents vs that of the child (in this case, “Baby Doe and “Baby Jane Doe”) continue to be debated.

Ethical Questions to consider:

1. What is the difference between the right to life and the right to quality of life? Who should decide the parameters of those rights and why? What role does one’s race, gender, and class play into those decisions?
2. What is the intersection between reproductive rights, the rights of the biological parents, and the rights of a child? Who should decide the parameters of those rights and why?
3. Imagine that you are either the child or the parents in one of the “Doe” cases. What specific medical, governmental, or personal rights or access would you want for yourself? How would that be shaped by your social environment, education, or economic standing?

[21] Passive killing was a term used to reference infanticide through conscious neglect or disregard of medical care for children considered to be defective and thus unfit for society. Passive killings were thusly discussed as mercy killing or euthanasia in many circles.

[22] “Another Baby Dies as Did Bollinger Boy” The Chicago Tribune (Chicago, Illinois) December 8, 1915. https://www.disabilitymuseum.org/dhm...d=1237&&page=1

[23] “Judge Clears, Yet Condemns, Dr. Haiselden” The Chicago Daily Tribune (Chicago, Illinois), November 20, 1915. https://www.disabilitymuseum.org/dhm/lib/detail.html?id=1236&page=all also see: The Day Book. Chicago Illinois 1911-1917, November 29, 1915. https://chroniclingamerica.loc.gov/l...9/ed-1/seq-30/

[24] Another Baby Dies as Did Bollinger Boy” (1915)

[25] Martin S. Pernick, The Black Stork: Eugenics and the Death of "Defective" Babies in American Medicine and Motion Pictures in America Since 1915, Oxford University Press, 1996.

[26] “Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy,” The National Library of Medicine (Bethesda, MD). https://profiles.nlm.nih.gov/spotlight/qq/feature/babydoe

[27] Ibid.

[28] Dennis J. Horan and Burke J. Balch, "Infant Doe and Baby Jane Doe: Medical Treatment of the Handicapped Newborn," The Linacre Quarterly Vol. 52, No. 1, Article 9 (1985): 45-72.

[29] Ibid.

[30] Nicole Fuller, "Baby Jane Doe, center of debate in '80s, now 30," Newsday (2013).

[31] Jack Resnik, "Weber v. Stony Brook Hospital (1983)". Embryo Project Encyclopedia (2011).

[32] Jennifer C. Kett, “Who Is the Next "Baby Doe?" From Trisomy 21 to Trisomy 13 and 18 and Beyond,” Pediatrics. 2020 vol. 146, Suppl 1 (2020): S9-S12.