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I want to thank those people who commented on my posting “The Cyclops Child.” Some comments were critical; and I thank you for them especially since they bring into relief the ethical issues I wanted to address. The concerns they express are my concerns.
Some of these critical comments, however, indicate that I have done a bad job of telling this story. I want to make certain things more specific. Please do not consider my remarks here as an attempt to change anyone’s mind about anything. I know that is not possible. For instance, some people have the reasonable idea that all babies should be treated the same, with care and respect, no matter what. I cannot quarrel with that. Babies have a special place in our lives. It is impossible to look at a new baby without smiling.
But this particular baby was special. One reader commented that she knew of a similarly deformed or defective child that was loved and nurtured during the brief time the baby was alive. Its short life was memorialized by its parents with a photograph. That baby was different from the Cyclops child. I know because no one would want a memento about having given birth to this child. You may not believe me. That is my fault, because I have not described the child adequately. It may not be possible for me to do so.
Some people objected to the word “monster” to describe the baby. I do too. I would not want any human being to be described in such terms. As I made plain in the blog, this was the medical term used to describe this sort of child—and certain others. When I looked up the Cyclops child in the library that day, I found it under the heading of “Monsters.” I was shocked by that name and am still. I think, I hope, that the term has since fallen into disuse as a description of a seriously deformed child. But I understand very well why the term “monster” was used.
A number of readers likened this child to someone with cerebral palsy and to someone else who had been disfigured in an accident; disabled persons who were distasteful to certain finicky individuals by virtue of their appearance. Someone else suggested that the Cyclops child was given short shrift because it was particularly ugly, on a scale of ugliness where we all fit somewhere. I think when I mentioned a deformed and impaired child, the reader pictured a Down’s baby, perhaps, with the facial stigmata of that condition, or perhaps one of the peculiar looking children who are born with one of the other chromosomal abnormalities—eyes too close or too far apart, a tiny head or a swollen head. The Cyclops child was another thing altogether. It is so rare, thank God, that it is very unlikely that any of the thousand people who have read this post has seen anything like it. Except for this particular child, I have never seen anything like it; and I have been practicing medicine for over 50 years. Aside from the doctors who interned with me, I have never known any doctor who has ever seen one. A Cyclops child is born somewhere on earth only every few years. It is not just ugly or deformed, it is horribly crippled. It was not possible to look at such a child without a visceral reaction. It is important to know all this to understand what happened during that time on the pediatric ward.
I do not think I can help the reader imagine this child. It is too far outside ordinary human experience. There are pictures of Cyclops children extant on the internet. I could have reproduced such a picture in my blog, I suppose, but sickening as these pictures are, they are not so terrible as the child I rocked in my arms long ago every day trying unsuccessfully to comfort it.
Does any of this matter to the way the baby was treated or should have been treated? No. But I want to paint a picture of what the people around this baby were experiencing.
The Cyclops child is too strange for anyone to imagine. But, perhaps, the reader can imagine something else. Try to imagine an interaction between that child and its mother. Imagine her reaction to this horribly deformed child doomed, obviously, to die. I think the mother would have been crippled by seeing the baby she just gave birth to. Perhaps you think I am exaggerating. Is it possible to be crippled simply by seeing something? It is. I have seen someone marred permanently by seeing a twin brother who was walking besides him crushed by falling masonry. More than one soldier has been damaged permanently by standing next to a friend who has been blown apart.
But if you cannot imagine this being true about a woman seeing her own child, try imagining that a doctor believes it to be true. If so, what should that obstetrician have done?
Some facts:
1. This baby had a condition that was not compatible with life. It was doomed to die. Nothing could have been done to save it. Usually such babies die in the first few minutes of life. Perhaps the obstetrician knew that when he told the parents the baby had been born dead; but I doubt it. He responded instinctively, I think.
2. This child was suffering. It was going to suffer the rest of its short life. A number of readers’ comments suggested I should have been more concerned about the baby than the staff. But the staff was not in turmoil because they thought the baby was ugly; It was because the baby was suffering, and they could do nothing to help it. Although It was missing a large portion of its brain, it could, plainly, still feel hunger and pain, perhaps thirst too. I always wondered how the baby survived that long without fluids. I think that a nurse may have given the child saline by clysis (an injection under the skin) when no one else was looking. At least, then, the baby would not have been thirsty throughout its brief life.
A number of readers suggested the baby was treated badly. What exactly did we do wrong? There was no way of feeding it, so it had to starve to death. Besides avoiding the stupid and cruel business of treating the child’s extra fingers, I don’t know what else could have been done for this child. I would be interested in any thoughts anyone has about this. In particular, what should I have done?
Finally, I am disturbed to discover that some people think I have said something here would justify treating disabled persons disrespectfully. Or worse. I wrote a novel “The Seclusion Room” in which a baby with Down’s Syndrome is depicted as cheery (as they usually are) in contrast to the narrator, who is chronically depressed. A sufferer of Down’s Syndrome can be happy. I wrote also about the Thalidomide babies that were appearing all over Germany when I was stationed there. These were young boys and girls with flippers instead of arms. I wrote about them in “Maneuvers.” I think their lives are no less valid and valuable than my own.
Before I submitted “The Cyclops Child” blog, my daughter asked me why I wanted to publish something that was going to make some people angry and upset some others. There are different reasons: First, it presents real ethical problems that are worth thinking about. Doctors wrestle with these problems out of the sight of others who prefer not to be aware of them. But they should be aware of them. Second, I have to admit, I would like to grab those people who are smug and certain about what is right and wrong and say to them, ”What about this?” “What do you do here?” “What if this awful thing is happening?” I understand, all babies should be treated the same with care and respect. No matter what. I get it. I agree. But what about this very extraordinary situation? Is there never any room for uncertainty and doubt?
Other people at other times have had different ideas. There was a time, in Sparta, for instance, when babies were left out on a mountainside to die if they were deformed. The Spartans thought it was unethical to allow a child to grow into a compromised life. But we are right, of course, and they were wrong. In my more sensible moments, I know I can’t reach these people who are so certain. They are unreachable.
Finally, I want to put this whole business out of my own mind. It happened such a long time ago. (c) Fredric Neuman 2012
