I recently read a blog post in Psychology Today, written by a psychiatrist who, as a young intern at what he only describes as a “Catholic institution” in the 1960s, was one of several involved in the care, if you can call it that, of a deformed newborn.
Let me describe the Cyclops child. It had a single fused eye in the middle of its forehead. The irises pointed to the sides. There seemed to be four lids surrounding the eye like a box. It was blind, of course. A large part of the brain and head were missing. There was no nose. On investigation, it turned out that the baby’s [o]esophagus and trachea had not separated, so that feeding the child was impossible. The food would go directly into the lungs. Also, the child had extra fingers. It did not look like a baby. It did not even look like a doll. It was unworldly. Alien. It was, someone said, “one of God’s little jokes.”
In a nutshell, the parents were told that their child had died at birth, yet the poor wretch lived for almost two weeks, without food or fluids, much to everyone’s surprise and, it seems, as you might expect, unease.
Now, I can imagine that this baby’s mother could well have recoiled in horror at the sight of what she had just given birth to and rejected her child, deeming it sub-human, as the obstetrician feared, and not wanted to take any responsibility whatsoever for what would be a brief and miserable life. Perhaps she would have wished all the anguish and disappointment away at once and been more comfortable denying her child’s very existence, consigning all thoughts of her imperfect creation to a forbidden memory, creating a secret never to be spoken of, as was more common to generations gone by. But was it ever the doctor’s call to make, in any time and in any place? After overcoming her initial shock, she might well have wanted to hold her child and comfort it. It was still her child. That this was denied her I find as upsetting as the lack of palliative care the poor infant received.
Of course, the main question here is one of ethics: would it not have been kinder to end this poor child’s life immediately and preferably with the blessing of its parents? As Dr Neuman states in response to a comment following his addendum, to prolong the child’s life – by intravenous therapy – would not have allayed its hunger and would have caused more pain through injections. There was never any doubt that the child would soon die. (However, I doubt that the pain of injections should be of concern to him now, and much less then, as he did not consider the pain involved in amputating a finger.)
Dr Neuman claims that he published the blog post not to upset people, although he realised that it would, but to provoke consideration of the two moral issues it presented: to not to tell the parents about their child’s condition (and to lie about its death), and “that a child doomed to suffer the rest of its short life should have its suffering ended as soon as possible” (which was not what happened).
Indeed, hindsight is wonderful, he is entitled to his regrets, but can any of us imagine being in his situation? To turn the other cheek is the easiest thing of all, we do it at scenes of emaciated children with flies on their faces in snapshot reminders of famine on television, usually when we’re gorging ourselves in comfort; we pretend the homeless man begging for change when we’re in a hurry isn’t there and that the person following behind will give generously anyway and make up for our regrettable rushing; we push out of our minds the frantic sounds of animals awaiting destruction in shelters because nobody wants them as we’re on our way to a happier, more colourful place to collect a pet for the kids. We don’t directly kill any of them, but of course we contribute to their deaths through our ignorance and inaction. Distancing ourselves from uncomfortable truths is how we sleep soundly at night.
The doctors and nurses dehumanised this anguished child to make their guilt and disgust less prominent. They willed it to die and for the awkwardness to be over so that they could get through the day more easily. How many of us wouldn’t have done the same?
The child was incapable of surviving without considerable intervention. To prolong such a miserable life through the wonders of medicine would be cruelty itself, I feel, but to choose to let a baby suffer a prolonged death in obvious distress is unforgivable. That deliberate neglect took place in a Catholic institution makes it all the more shameful (but perhaps not quite so surprising, come to think of it, but that’s a blog for another time).
This was passive euthanasia. Active euthanasia would have been less cruel.
My view remains that families ought to make difficult decisions concerning the lives of their loved ones, not doctors. How much love the parents of one so horribly disfigured and doomed could feel for their child was not for the doctors to estimate.
Taking away a parent’s right to decide if they wish to see and comfort their child as it approaches an inevitable death is unconscionable. They should have been given the opportunity to comfort their baby, to bury their baby and grieve for their baby. They, not doctors or nurses whether well-meaning or simply inconvenienced and upset, should have made the all-important decisions on behalf of that child – their child. One can only imagine whether they would have condoned the unnecessary surgery that caused the infant to cry out in pain, but you like to think they at least could have spared their child this needless suffering.
I wonder how much attitudes have really changed.
True that nowadays, with medical advances and greater emphasis on human rights, we keep people alive who would have soon perished 50 years ago. We keep people alive, many of whom, if they could communicate their true wishes, would likely plead for an end to their misery and indignity. I know that I would. I am also thankful that abortion means that a child such as the one described by Dr Neuman, who will have absolutely no quality of life even in the most advanced nations, need never be born.
Perhaps I am not alone in being sickened by the general arrogance of the medical profession. To me, Dr Neuman seems remorseless, stubborn in his defence of not only his actions but those of his superiors, and far more concerned for the distress being caused the nursing staff than the anguished cries of a clueless newborn.
He lacked the courage and integrity to speak out against what you would like to believe anybody could identify as a great injustice. Acknowledge his tender age and inexperience, conclude that he was perhaps unable to dissent under the circumstances, yet he remains complicit in the act of deception, mutilation and starvation, and for this I find no evidence of a guilty conscience in any of his words.
I cannot decide whether Dr Neuman deserves our condemnation or our sympathy. I think those who attack him most harshly ought to read his admittedly cold words a second time and try to put themselves in his place. Glass houses and stones and all that.
Yes, he writes insensitively, his lack of empathy fifty years later is worrying, the subject matter is deeply chilling (even to generations used to freak shows and the most vile of horror fantasies), and perhaps the timing only serves to confirm his cowardice, for he regales us with his memoirs secure in the knowledge that the parents of the wretched child are probably now dead and never likely to discover the grim truth. His only regret seems to be that he did not smother the unfortunate babe when the chance presented itself, yet even this professed compassion seems to owe more to sparing the nursing staff further anxiety and revulsion. The passages of time have clearly not softened his heart to the child’s plight; being somehow sub-human clearly meant the crying baby was less worthy of the nurses’ dedication and affection.
Be disturbed by his honesty by all means, but at the same time applaud it because it makes us question our own morality and consider the issues we would rather not wrestle with; in this case, the validity of legalising euthanasia, which is something we have discussed before, and the harsh fact that we cannot truly begin to imagine how we would have reacted to such an awful, awful scenario.
I still feel they should have ended the child’s life immediately. I consider it mercy when doctors, with morphine, hasten the demise of the fatally ill and most distressed.
Which is most cruel: to prolong one’s suffering or to wish to end it by taking a life?
A final question. If you read Dr Neuman’s blog post, is anyone else more troubled by the 70-year-old denied fluids because, to her doctor, it was “time for her to go,” and wonder how many other lucid, not-so-senior seniors have been prematurely dispatched on the say-so of a ‘professional’ to whom we entrust our lives? A truly frightful thought.