"Over all the years that followed, I found myself thinking from time to time of that picture, my hand over the baby's mouth. I knew then, and I still think now, that the right thing to do would have been to kill that baby."
Like a morbid time capsule from the mind of an elder New York psychiatrist, a report surfaced this week in which Dr. Fredric Neuman essentially confesses to criminal breaches of medical ethics. His essay "The Cyclops Child," which appeared on the website of the journal Psychology Today, recounts the dishonesty and cruelty surrounding the brief existence of a child with severe birth defects. Compounding the offenses detailed in the story itself, Dr. Neuman uses dehumanizing terminology -- referring to the infant as a "monster" -- and focuses disproportionately on the hardship endured by hospital staff, as opposed to the dying child (or "it," according to the author). An anachronism of some unadulterated views from a voice of the medicinal community circa 1960, "The Cyclops Child" is an offending document in itself.
I will summarize here the critical facts resurrected by Dr. Neuman, but please do read his entire essay as well. While he withheld the specifics, I estimate that the hospital was St. Vincent's (now closed), and the year was 1959 or 1960 (based on my review of his curriculum vitae). The essay -- which catalogues what would today be considered kidnapping, assault and possibly murder -- shocks our modern sensibilities. "As a person with disabilities, I find this entire post chilling," one of Dr. Neuman's readers wrote. "I hope the NY state medical board investigates the physicians involved and takes appropriate action," chimed in another.
Here's what happened. A mother gave birth to an infant with a fatal developmental defect called holoprosencephaly. Infants born today with this condition are almost unheard of, as most women will opt to abort the pregnancy when the condition is identified on an early ultrasound. Fifty years ago, women didn't have this option. They were treated by obstetricians who felt that they operated on a higher plane than the rest of us, paternalistically keeping information from patients and limiting options however they saw fit. In this case, the obstetrician decided the parents should not know that the baby was born with the condition. Instead, he and the rest of the team lied to the parents, telling them their baby was dead.
A word about this baby's condition, holoprosencephaly. As humans develop in the womb from a bundle of cells into distinct tissues and organs, the nervous system emerges from a structure called the "neural tube." In rare instances that doesn't form appropriately. In the case of holoprosencephaly, a defect in the neural tube occurs at the head, and various midline structures like the brain, eyes, and mouth may not fully form. In this case, Dr. Neuman describes the deformity using "cyclops" -- which is actually a valid medical term, but is used here outside of the appropriate pathological context -- in describing eye tissue that did not separate into two distinct eyes. It is disturbing that the term holoprosencephaly never occurs in his essay.
The baby is treated as an object and given no gender, referred to as "it." In the events that followed there is no indication that he received any palliative treatment, as would be the standard today (comfort care, including pain management).
The hospital staff expected and hoped that the newborn would soon pass away, but he did not. They left the child ignored in the back of the hospital nursery. Doctors and nurses waited for him to starve. An excruciating death watch followed that dragged on for about 13 days, as Dr. Neuman notes in the comments section of his piece. The child's cries anguished nursery staff who kept the dark secret. Dr. Neuman wrote:
"There was a price to be paid. Dying though it might be, the staff still had to tend to it, to change it, to clean it, to hold it in repeated attempts to comfort it. The baby was suffering, and so was everyone else. Earlier, I had caught an aide crying. A couple of nurses had stayed home that day. It was at that point that I began to think about killing the baby."
Dr. Neuman did not kill the baby. But he did torture him at the direction of his senior resident, who asked him to practice a finger amputation procedure on the child:
"The way you treat a baby's extra fingers is to tie a ligature, a string, as tight as you can around the base of the finger. The blood supply is cut off, and after a while the finger falls off.
When I went over to the baby, it was lying quietly in its bed. It did not object when I picked up its hand. But when I tied the ligature around its finger and pulled tightly, it screamed."
The newborn finally died. The parents of the child never knew of the suffering or the needless procedure. Dr. Neuman still believes he should have euthanized the child:
Over all the years that followed, I found myself thinking from time to time of that picture, my hand over the baby's mouth. I knew then, and I still think now, that the right thing to do would have been to kill that baby. It wasn't really a baby; it just sounded like a baby--that's what I tell myself. But I would like to stop thinking about it. After all, the whole thing happened over fifty years ago.
I'd compare Dr. Neuman's sickening tale to the work of Edgar Allen Poe, except that Dr. Neuman has not written a piece of creative fiction. This is the truth, we're told. So, has Psychology Today just published potential evidence in a trial for murder?
That's possible, but in no way probable, says Professor Martin Guggenheim of the New York University School of Law. Despite the fact that the statute of limitations doesn't run out on homicide, Guggenheim can't imagine a city prosecutor being interested in the case today. "Particularly because St. Vincent's is no more, I'd be more than a bit surprised if a prosecutor would do anything about this," Guggenheim says. All the other crimes - the kidnapping, the assault, the lies - are far too dated to be actionable.
Disability scholar Rebecca Garden, who teaches medical bioethics at Upstate Medical University, points out that despite the prevailing 1960's attitudes in this essay, deciding when life is worth living is still a contested issue. Disability rights advocates are still dealing with this on a daily basis. In this context, she feels Dr. Neuman's blog post is "distressing on many levels."
"This piece seems to be a complex and conflicted mix of confession, provocation, and defense or apologia," Professor Garden told me. Parts of "The Cylops Child" are written in the present tense. There is a passage where Dr. Neuman suggests that an obstetrician could smother such a baby. His observation that "such things happen" isn't confined to the past, Garden observes.
How can we fathom Dr. Neuman repeatedly describing this child as a monster? According to Laurence McCullough of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, we're merely witnessing equally valid discourse from another era. Our modern scientific understanding that such developmental anomalies are errors of reproductive development derived from our evolutionary biology carries little human meaning, Prof. McCullough points out. A monster was considered "a portent sent by the Gods to punish transgression."
At least that's something people can somehow grasp and justify. "What may, at first, strike us as a wrong-headed or even repellent discourse of the past... turns out to have a distinct advantage over our own," McCullough says.
Though I would like to think of "The Cyclops Child" as a dusty artifact, it nonetheless appeared on my computer in 2012, from the mind of person living contemporaneously. I find myself trying to construct a narrative around it, to explain and contain it. Maybe Professor McCullough is right that "human scale" explanations at least offer us a framework to comprehend the things that distress us.
Alright, then. I'll believe the essay is a monstrosity published by the Gods to punish one doctor's fifty-year-old transgression.