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"I want to put this whole business out of my own mind. It happened such a long time ago."
July 15, 2012 10:42 AM   Subscribe

The Cyclops Child is an essay published in Psychology Today by Dr. Frederic Neuman, M. D., detailing the brief life and death of a child born with Holoprosencephaly in the 1960s. Ford Vox, writing for The Atlantic, critiques the essay, and Dr. Neuman has published an addendum in response to the ensuing medical ethics debate.
posted by Chutzler (117 comments total) 40 users marked this as a favorite

 
I had the same feeling, reading that, as I do reading Lovecraft.
posted by Diablevert at 10:52 AM on July 15, 2012 [7 favorites]


Glad Ford Vox wrote his piece. Well done.
posted by ClaudiaCenter at 10:57 AM on July 15, 2012 [1 favorite]


Wow. Fascinating. A truly impossible dilemma. I agree with what they did.
posted by ReeMonster at 10:57 AM on July 15, 2012 [1 favorite]


The comments are really worth reading.

Not often I say that.
posted by Leon at 10:59 AM on July 15, 2012 [1 favorite]


I feel we (western society) have come a long, long way in the past fifty years. There have been remarkable changes in attitudes and human rights.
posted by five fresh fish at 11:03 AM on July 15, 2012 [2 favorites]


I wanted them to give the child pain killers, at least.
posted by vitabellosi at 11:04 AM on July 15, 2012 [3 favorites]


The Cyclops child is too strange for anyone to imagine.
No, actually it's not. Welcome to the age when any patient can look up almost anything they want. I read the Atlantic story yesterday and made the mistake of googling Holoprosencephaly (honestly, as they say on the internet, NSFL "not safe for life"). It really is quite a gruesome condition at its worst. But I also remembered the many threads here about people with anencephalic babies , who are often quite horribly deformed as well (you'll notice a lot of pictures of them they are wearing hats or bandages placed in a way to hide the deformities). And the mothers still want to hold these babies, memorialize their births, and prepare for their inevitable deaths in personal ways such as writing a blog or having their priest/rabbi/etc. come in to do last rites.

From Dr. Neuman's rebuttal:
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.
The whole point of the outrage is that's not the doctor's decision to make. And it makes me glad that we live in a time when at most good hospitals the mother here would have been informed of her child's conditions, offered the option to terminate, and if she decided to give birth would have been allowed to make decisions to help her and the baby feel comfortable. In some countries they would have had the option of humanely speeding the child's death. I don't think anyone is arguing that the baby's life should have been prolonged, but the parents of the child deserved the right to know and to care for their child as they saw fit.
posted by melissam at 11:06 AM on July 15, 2012 [15 favorites]


How can we fathom Dr. Neuman repeatedly describing this child as a monster?

How indeed? This is especially hard to fathom, because Neuman doesn't do this. The word "monster" appears twice in the article, both times in this paragraph:

It was a “monster.” That was the medical term used to describe a grossly misshapen baby. The doctor was concerned, then, first of all, about the effect on its mother of seeing the child. Therefore, he told the parents that it was born dead; and that the body had been disposed of. But the child was alive. This particular “monster” had deformities that were not consistent with it living for any length of time.
posted by thelonius at 11:07 AM on July 15, 2012 [9 favorites]


I had to stop reading at "It was hungry and could not be fed."
posted by maudlin at 11:15 AM on July 15, 2012 [2 favorites]


Sorry, reflecting after reading the critique ---- it is interesting to me, the power of euphemism in this point/counterpoint. Neumann calls the child a monster; the Atlantic writer recoils from that. But is Neumann wrong? What is a monster but that which has some part of humanity but yet which is not human?

If we call the child disabled, if we call the affliction a disorder, we place it in one category: human, but injured or broken or flawed in some way. By calling it a monster, Neumann places it outside humanity, and this makes it acceptable to kill. (I'm doing some code switching of my own in this paragraph, I note.)

But which is it? What determines this? Monster is a cruel word, disabled a kind one; the label flips the switch...
posted by Diablevert at 11:15 AM on July 15, 2012 [4 favorites]


What I wanted to see from Dr. Neuman in his reply was something along the lines of :
"we were extremely backwards back then and now we know better. In a modern hospital this infant should have been provided proper palliative care such as pain killers and sedatives. Infant euthanasia is still a major ethical debate and should possibly be offered as an option to parents of children such as the one in question, as well as the option to terminate before birth. "

Instead he says that the condition was too horrible and strange for the parents to be allowed to make decisions about their own child. He defends the backwards practices of that time. That is incomprehensible to me.

He asks "What exactly did we do wrong? There was no way of feeding it, so it had to starve to death." Juxtaposed with "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." So if the baby was given proper palliative care, it was done under the table? No mention of painkillers. No mention of the rights of the parents. This to me is more horrifying than any of the pictures if saw on google of children with Holoprosencephaly.
posted by melissam at 11:16 AM on July 15, 2012 [36 favorites]


Neuman absolutely does not call the child a monster. He scare-quotes the term and clearly explains it was medical usage in the 1960s. Close readings should read closely.
posted by Sidhedevil at 11:21 AM on July 15, 2012 [6 favorites]


Do not get me wrong, I think everything that hospital did to that child and its parents was wrong, from the OB who lied about the baby's status to the doc who gave Neuman the order to ligate the baby's supernumerary fingers to them not doing at least a saline drip.

But Ford Vox's piece is an inaccurate close reading. Castigating Neuman for calling the baby "it" was also miles off, as a baby with that level of physical malformation is very unlikely to have had genitalia that clearly indicated a biological sex.
posted by Sidhedevil at 11:29 AM on July 15, 2012 [3 favorites]


Side note: Whether hydration is or is not palliative for a particular patient can be a complicated question. For many dying patients, dehydration can function as a natural anesthesia, and can (paradoxically given our science! view of end-of-life care) enhance physical comfort. For some dying patients, dehydration causes complications such as mental confusion.
posted by ClaudiaCenter at 11:30 AM on July 15, 2012 [3 favorites]


The wrong began and ended with the failure to tell the parents. By putting the child into a legal limbo they couldn't do anything, to any end. I do not disagree with the desire to save the parents from having to see the child, although they have the right to do so. Care then could have been given had they wanted, else not, the child could have been put down and saved from what sliver of horrific existence it was doomed to live out. The idea that killing such a person constitutes murder is the output of a very very broken moral view of human existence. It is a shame on Vox that he could even suggest such a thing.
posted by Jehan at 11:31 AM on July 15, 2012 [3 favorites]


It really is ghastly that two weeks of starvation was considered OK.
posted by thelonius at 11:31 AM on July 15, 2012 [6 favorites]


Neuman absolutely does not call the child a monster. He scare-quotes the term and clearly explains it was medical usage in the 1960s. Close readings should read closely.

Do you think the scare quotes do much, really? To me seems a bit like letting him have his cake and eat it, in this instance. Near as I can tell from googling it, the medical definition of a monster was one that was "grotesque and usually not viable" --- if grotesqueness is one of the criteria, then I think the use of the word as a medical term certainly still carries the same connotation of "inhuman" that the common usage does. Neumann could, of course, have avoided using the term entirely --- i'd say the point of bringing it up is to remind us that back then such infants were thought of as inhuman (that being a part of the point of the whole essay). The scare quotes are a cheat and a sop to modern sensibilities that diminish little of its power.
posted by Diablevert at 11:32 AM on July 15, 2012


The story of the child aside, this:
“Why did you give that woman fluids? I hadn’t ordered anything.”

“She hadn’t had anything in two days.”

“She’s 70 years old, for God’s sake. It’s time for her to go!”

I knew, of course, of doctors who hastened the demise of painfully, and fatally, ill patients; but this woman was not suffering. She was not senile, and she didn’t even have a fatal illness. This guy decided for whatever reason that she was old enough to die!
What the fuckitty fuck fuck fuck?
posted by localroger at 11:38 AM on July 15, 2012 [19 favorites]


Yes, I think the scare quotes are very clear. He doesn't use the word "monster" anywhere else in the piece. He is being accurate in talking about the conceptual category that shaped the hospital's shocking treatment of this patient---they treated this patient so poorly because they had defined the patient as a "monster".

Now, I agree with you and with Ford Vox that Neuman has insufficiently examined his own complicity in that mindset. But leaving it out would be leaving out an important element in why shit like that happened,
posted by Sidhedevil at 11:40 AM on July 15, 2012


Note that from the the late 19th century to the late 1980s, it was a widely accepted medical belief that babies did not feel pain.
posted by elgilito at 11:44 AM on July 15, 2012 [9 favorites]


The comments are really worth reading.

I agree. I too was hoping for a little more "This was terrible backwards and I am ashamed" but this is also not something you always get from specialists and folks in the medical profession specifically in my personal experience. Neuman has replied in the comments and has written the follow-up which is what makes it all so interesting as a modern-day read. Terrible things were done not so long ago because they were more or less standard procedure and the people who made those decisions are not only around and practicing today but may be, thanks to the weird panopticon of the internet, able to discuss and explain their mistakes. I have some oogy chills wondering if those parents who never knew their child was born alive may now somehow find out.
posted by jessamyn at 11:45 AM on July 15, 2012 [2 favorites]


I couldn't get over his constant reiterations of horror. Isn't part of medical training learning how to deal with the ways the body can go wrong? Horror at the treatment the baby received is called for though; we are so cowardly in the face of unsustainable life that we cruelly starve rather than give the kindness of release. We treat dogs better than that.
posted by emjaybee at 11:45 AM on July 15, 2012 [8 favorites]


I have some oogy chills wondering if those parents who never knew their child was born alive may now somehow find out.

There are lots of stillbirths. Thanks to the ery plausible lie no individual who was told their child died in labor has any particular reason to think this was their "dead" child.
posted by localroger at 11:50 AM on July 15, 2012


This was like a punch in the gut.

I was born with a number of problems - nothing so extreme or disfiguring, but bad enough that I wasn't expected to live more than a few days. The doctors told my parents to plan my funeral, and my grandmother had a priest hurriedly baptize me so I wouldn't end up in ... wherever unbaptized dead babies end up.

They moved my mother away from the maternity ward so she didn't have to listen to crying babies and happy new mothers. She didn't see me for days. I didn't come home from the hospital for weeks (maybe months). I had to be fed with an eyedropper; I couldn't feed from a bottle or nipple because it'd come shooting out my nose.

Obviously I lived, but after many surgeries and hospital stays. I'm fortunate to have a pretty normal life except from a few extra aches and pains.

I haven't wondered until today whether any of the staff acted differently because they thought I would die anyway. It's a horrifying thought.
posted by desjardins at 11:55 AM on July 15, 2012 [13 favorites]


wait... what counts as "grossly misshapen"?
posted by desjardins at 11:58 AM on July 15, 2012 [2 favorites]


The Cyclops child is too strange for anyone to imagine.

No, actually it's not. Welcome to the age when any patient can look up almost anything they want.


Dr. Neuman said that the pictures available online don't tell the story of this particular child: "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."

He also says this regarding painkillers, in the comment section of the addendum: "Dr. Vox asserts that the baby was denied palliative care ("comfort care, including pain management.") The child was not in pain except on the occasion when I caused the pain. Attempts were made endlessly by me and other staff members to comfort it--to no avail."

As for the situation: this is what happens to dying infants when euthanasia is not an option. Newborns are still left to die slowly in hospitals today, more often than we'd like to admit, and I'm not sure our attempts at palliative care make up for that. "What if this awful thing is happening? Is there never any room for uncertainty and doubt?" about sums it up -- hard-and-fast rules tend to break down at the extremes of human physiology, and those extremes aren't going away anytime soon. We need to talk about this, to think about it, to come up with ways to deal with it which are better than the old ways. Reacting with shock and dismay when a doctor tells the truth about what happened will, unfortunately, do nothing to stop it from happening again and again and again, because in many ways it happens because no one wants to talk about it. Note that no meeting appears to have been held, no treatment plan drawn up, no group decision made; everything happened in silence and shame, an entire maternity ward reduced to individuals acting in secret.

I think that was the true wrong. The thing about not telling the mother is one of those Lady and the Tiger choices, with potential harm waiting behind each door... I tend to take personal choice as an overriding moral good, but that, too, breaks down at the edges.
posted by vorfeed at 11:59 AM on July 15, 2012 [17 favorites]


Holy fuck:

A couple of nurses had stayed home that day. It was at that point that I began to think about killing the baby....

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.

posted by mediareport at 12:12 PM on July 15, 2012


Neuman's elaborations on the child's appearance in the addendum, as if we the readers can't fathom how it could happen, doesn't accomplish what I think he means it to:

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.

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.
Dr. Neuman still hasn't convinced me the mother or child deserved that. He's like a fisherman trying to tell me about the one that got away. He's probably not a watcher of TLC reality shows either. Thanks to the wonders of the internet I, too, couldn't resist a Google image search. And my visceral reaction, no matter the extremity was "That poor, poor baby. Those poor parents." Their actions and inaction described are sickening, and the clarification of the length of time this child lived (rather hidden in the comments!) was just twisting the knife. There was still a body to hold, there was still soft skin to touch, and there was still a heartbeat for the parents to feel. My arms ache for that mother.

I, too, think a little more "mea culpa" is called for. I am glad for the critique, and hope it at the very least it leads Dr. Neuman to compose with more thought in the future. If he thinks, as he said,
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.

and that the thousand people is only literally a thousand, he is more of a relic than I gathered from reading his first essay. Though, of course, maybe more ghastly mistakes would be uncovered by future careless writing...
posted by peagood at 12:14 PM on July 15, 2012 [5 favorites]


There was definitely some sketchy medical ethics in the 1960's.

I was born in 1964. My mother was morbidly obese and probably already diabetic and apparently we both nearly died on the occasion of my birth. My parents' physician, one Dr. Jacques, sent us home after a week in the hospital (and in those days a reasonable bill that my grad student father was able to pay).

What he neglected to tell them was his considered opinion that my mother probably would die if she tried to give birth again. So a year and a half went by and my parents moved to California so Dad could fulfill the his Naval enlistment requirement which had been a condition of his fellowship to get the Ph.D. (He got lucky and didn't go to Vietnam; he spent his two years at the Naval Postgraduate School in Monterrey, CA.)

So, fortunately, one day my grandmother goes in for her checkup and Dr. J recalls that he hasn't seen R or K for awhile and inquires. Upon hearing of their whereabouts he insists that my grandmother must call them this very day to make sure they know it is absolutely imperative that K not ever again get pregnant. Since they were in fact planning on trying to have another child this caused no small amount of anguish, not only as to the risk that they might have gone some more distant place or my grandmother had a different doctor, but also as to all the plans they could have avoided wasting time on if they'd just been told the truth.
posted by localroger at 12:15 PM on July 15, 2012 [1 favorite]


I read the original article and the critique and then started reading the rebuttal and was expecting something like "Yes, mistakes were made, but we didn't know any better back then, things are different now.

Was not expecting this.

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?
....
It wasn’t really a baby; it just sounded like a baby—that's what I tell myself.


Oh wow. Oh wow. I just don't know what to say about this besides "Keep this guy away from suffering creatures." But he's a doctor, so, he's in the business of being around suffering creatures.

I also love the Orwellian-like euphamism of "treating" the extra fingers. I didn't know at first that when they said "treat" the extra fingers they meant "remove". I had some naive belief they meant putting some kind of soothing balm on them. I am so naive sometimes.
posted by bleep at 12:16 PM on July 15, 2012 [7 favorites]


This guy's philosophy of ethics seems really simplistic:

In my opinion, these ethical rules sum to one principle: unethical behavior is behavior that hurts, or has the potential to hurt, other people. There is only one good: kindness, and one evil, cruelty. Ordinarily one does not lie, for instance, but might ethically do so if it served the purpose of helping someone, rather than hurting someone as it usually does. By this admittedly vague criterion any particular act, thievery, deceit, even murder, could be ethical.
posted by mediareport at 12:17 PM on July 15, 2012 [1 favorite]


It so happened the other day that I was reading the Wikipedia article about harlequin-type ichthyosis (by which I mean I was procrastinating horribly). This article immediately reminded me of a passage excerpted in that article:

The disease has been known since 1750, and was first described in the diary of a cleric from Charleston, South Carolina, the Rev. Oliver Hart:

"On Thursday, April the 5th, 1750, I went to see a most deplorable object of a child, born the night before of one Mary Evans in 'Chas'town. It was surprising to all who beheld it, and I scarcely know how to describe it. The skin was dry and hard and seemed to be cracked in many places, somewhat resembling the scales of a fish. The mouth was large and round and open. It had no external nose, but two holes where the nose should have been. The eyes appeared to be lumps of coagulated blood, turned out, about the bigness of a plum, ghastly to behold. It had no external ears, but holes where the ears should be. The hands and feet appeared to be swollen, were cramped up and felt quite hard. The back part of the head was much open. It made a strange kind of noise, very low, which I cannot describe. It lived about forty-eight hours and was alive when I saw it."


The referenced article was not linked to an online source, as it was published in 1932. I would desperately like to know more about the few days of that child's life and of its family's life. Was it named? Did the mother see it -- did the father see it? What about any brothers and sisters? If this was a first child, the mother may not have known that this could easily happen again. Who sat up with the child? Who blamed who?

Certain forager cultures have beliefs that mandate the death of one child from any pair of twins, or of an infant whose mother has died. These have religious and magical justifications, of course, but they map directly on to a small band's inability to care for more than one suckling child per mother at any given time. Can you condemn it? I mean, I can, but I'm sitting here on the damn internet.

This is terra incognita, always and everywhere. I don't necessarily want to be on Dr. Neuman's side, but I believe that he did the best that he could.
posted by Countess Elena at 12:17 PM on July 15, 2012 [12 favorites]


Thanks to the [v]ery plausible lie no individual who was told their child died in labor has any particular reason to think this was their "dead" child.

On the contrary, the mere possibility, however remote, that it could have been their child will convince many that it was.
posted by kindall at 12:18 PM on July 15, 2012 [2 favorites]


There was still a body to hold, there was still soft skin to touch, and there was still a heartbeat for the parents to feel. My arms ache for that mother.

My gut twists for the baby -- blind, in agony, subject to a whimsical little maiming. I'm sorry, but I honestly see no reason why that poor thing, incapable of even taking nourishment, was not immediately shot full of a fatal dose of opiates and left to drift away. I know exactly why that didn't happen, but you will never convince me it shouldn't have.
posted by kittens for breakfast at 12:20 PM on July 15, 2012 [44 favorites]


Anyone who had a stillborn baby at St. Vincent's between 1959-1960 could plausibly believe or at least wonder if it was theirs. I wonder if it was preceeded by a difficult pregnancy would it be more likely to be theirs?
posted by bleep at 12:23 PM on July 15, 2012


and that the thousand people is only literally a thousand, he is more of a relic than I gathered from reading his first essay. Though, of course, maybe more ghastly mistakes would be uncovered by future careless writing...

It doesn't surprise me that he believes he's seen something so horrible that none of us can even begin to imagine it. I almost wanted to say Welcome to the internet Dr., where things even more horrible than you've probably ever seen are voluntarily perused by millions of people (certain subreddits like Spacedicks (VERY VERY NSFL) for example). And medical information available freely is causing the paternalistic culture of medicine to crumble. You can no longer do whatever you want and expect to be treated like gods.
posted by melissam at 12:25 PM on July 15, 2012 [5 favorites]


With respect to the "monster" terminology, it was only 2 years ago (i know because i was at the meeting) that "monster" as an entry term for multiple congenital abnormalities was removed from the Medical Subject Headings database that is used to index most medical articles. Yep, 2010.
posted by gaspode at 12:26 PM on July 15, 2012 [12 favorites]


Holy fuck:
...I knew then, and I still think now, that the right thing to do would have been to kill that baby...
Why is that shocking? Overall it is a very fair and reasonable thing to end the lives of irreparably compromised children. Those who cannot be saved from death can at least be saved from suffering. In some countries this is the law. But in the given circumstances of this child, his deed of killing the child would have been the most moral act of all the medical staff there. Greater harm was done by not killing the child.
posted by Jehan at 12:29 PM on July 15, 2012 [20 favorites]


they map directly on to a small band's inability to care for more than one suckling child per mother at any given time.

Not to be picky, but last time I checked most women seem to have two breasts. Besides which, it is quite possible for non parental units -- even men! -- to develop milk and feed babies if the nipples are stimulated.
posted by localroger at 12:29 PM on July 15, 2012


Regarding medical ethics in the 1960s: I'm old enough to remember that there was discussion and some controversy over whether or not a terminally ill patient should be informed that their illness was terminal, as it was believed that the knowledge of immanent death would be too psychologically painful for the patient to bear. (It showed up as a storyline in Coronation Street, as I recall.)
posted by jokeefe at 12:30 PM on July 15, 2012


Jehan, I admit a lot of the shock is in the way he talks about the experience, without many of the caveats we expect today. His simplistic philosophizing doesn't help on that score. But if you don't find it shocking that a doctor spent time thinking about the best way to smother a baby without anyone else knowing about it, there's nothing else I can say.
posted by mediareport at 12:32 PM on July 15, 2012


There is a big mental difference between giving birth to a stillborn and giving birth to a hideously deformed thing that can only barely resemble a human baby. Perhaps they were thinking about sparing the woman the thought that she had made this happen, that her next pregnancy might result in something so horrible.
posted by Foam Pants at 12:35 PM on July 15, 2012 [4 favorites]


Jehan, I admit a lot of the shock is in the way he talks about the experience, without many of the caveats we expect today. His simplistic philosophizing doesn't help on that score. But if you don't find it shocking that a doctor spent time thinking about the best way to smother a baby without anyone else knowing about it, there's nothing else I can say.
Given the circumstances, he had to. He didn't make those circumstances, he only sought to navigate them. Once we acknowledge that the best interests of that child were a speedy and painless death, we instead condemn him not for having such thoughts, but for failing to act on them.

The parents should have been informed, and proper care decided upon openly and willingly. But in his shoes, I would have thought the same things. And I hope gone through with them.
posted by Jehan at 12:46 PM on July 15, 2012 [2 favorites]



I also love the Orwellian-like euphamism of "treating" the extra fingers. I didn't know at first that when they said "treat" the extra fingers they meant "remove". I had some naive belief they meant putting some kind of soothing balm on them. I am so naive sometimes.
posted by bleep at 3:16 PM on July 15 [1 favorite +] [!]


My husband's family is prone to extra digits, among other things. His older sister, born around 1960, had her extra pinky fingers were surgically removed when she was 2 or 3 -- with, you know, general anaesthetic and painkillers after. Various cousins waited until their teens to have their extra pinky toes off. I'm still reeling from the rest of the article, and cannot believe strangulating a digit was the practice. Not to mention, a single strand of hair around a baby's toe often causes discomfort, swelling, infection and inconsolable crying and it looks freaking horrible when it happens by accident. Cripes.
posted by peagood at 12:51 PM on July 15, 2012 [1 favorite]


I think it's a little unfair, privileged, and naive to impose modern values on a set of worldviews and events that transpired 50 years ago. We are barbaric in our own ways; in evaluating the mistaken thinking of prior generations I would rather not judge but understand and perhaps in time, forgive.

It's not just that what happened was unethical, it was also that there was a totally different paradigm of ethics back then.
posted by polymodus at 12:52 PM on July 15, 2012 [18 favorites]


That baby was different from the Cyclops child. I know because no one would want a memento about having given birth to this child.

I find Dr. Neuman to suffer from a type of arrogance I have occasionally seen in other M.D.s . How does he know what reaction every other person in existence is capable of?

Some facts:

1. This baby had a condition that was not compatible with life.


This baby, who was living, was 'not compatible with life'? Doesn't even make sense.
posted by not_that_epiphanius at 12:53 PM on July 15, 2012 [2 favorites]


I don't think the problem is that he was going to kill the baby. I think the baby should have been humanely put to sleep after consulting with the parents.

The problem is the callous way the baby was treated in life and failing to inform the parents. The thing about "treating" the baby's fingers was all about personally profiting (in experience) from another creature's suffering. Without even making an attempt at easing the suffering. That is inexcusable.

To say that the parents weren't informed "for their own good", well, I don't think it was either "Don't tell them" or "Do it in the most shocking possible way." I'm not a doctor and I already know this, so I'm not okay with excusing them because it was sooo long ago. It wasn't that long ago and these are basic standards of decency. It's not okay just because they thought they were superhumans and/or God's representatives on earth.
posted by bleep at 12:59 PM on July 15, 2012 [4 favorites]


I'm still reeling from the rest of the article, and cannot believe strangulating a digit was the practice.

It was still the practice in 1974, because my thumb was removed by ligature (the bones in it had never formed).
posted by desjardins at 1:08 PM on July 15, 2012


Before I switched to molecular genetics, I was a cytogenetic technologist for twelve years. I analyzed the chromosomes from cells in the blood, amniotic fluid and bone marrows of adults, children and fetuses. The most disturbing part of the job for me was receiving "Products of Conception" specimen obtained from a miscarriage. I had to sort through a bloody mess to identify and isolate the fetus to collect cells for the study. To this day I can't decide which was worst, finding a normal looking fetus and feeling sorry for the parents loss or finding a deformed one and being glad that nature had intervened and spared the anguish that this child would have caused to the parents.

I can't remember ever thinking that the fetus was less than human, even when horribly deformed.
posted by francesca too at 1:10 PM on July 15, 2012 [10 favorites]




Calling the child a monster may appear callous but is technically accurate. In fact the greek root meaning "monster" is "terato-" and chemicals known to cause significant birth defects are called "teratogens". In their quest to spare the feelings of layfolk, the p.c. police are actually encouraging the misrepresentation of severe defects by trying to couch things in "nice" words.
posted by Renoroc at 1:14 PM on July 15, 2012 [2 favorites]


I was okay with his original artical, but I think he really went off the rails in the addendum:

I know because no one would want a memento about having given birth to this child.

I had a child with a neural tube defect, her face was not "normal", I do have pictures of her I look at occasionally and I remember her as being beautiful; the much-wanted product of love from my husband and I, even though I know there is literally no one else on this earth that would agree.

I think the "face only a mother could love" truism would be a more interesting psychological angle for the Dr to investigate. The human mind and heart have a flexibility he does not recognise.
posted by saucysault at 1:14 PM on July 15, 2012 [30 favorites]


The sixties was a screwed up time. People were socialized to put their babies with Down Syndrome into homes instead of raising them themselves. Doctors were paternalistic in the extreme-that article did not surprise me one bit. (And people in general were socialized to treat their doctors as if they were God Almighty and usually would never question them on anything. Horrible.)
posted by St. Alia of the Bunnies at 1:17 PM on July 15, 2012 [3 favorites]


This baby, who was living, was 'not compatible with life'? Doesn't even make sense.

Went down the wikipedia rabbit hole and this stuck out in an article about a man with an almost-normal IQ despite having essentially a sliver of a brain:
"What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute. "If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side."
Not that this baby ever had a chance to live, but underscores the arrogance of using such a phrase. The baby was alive, even if it was fated to die, and deserved to be treated like a living human being.
posted by melissam at 1:27 PM on July 15, 2012 [3 favorites]


As it was presumably Catholic parents, the Doctor may have been aware of factors in the family that would lead him to think the mother would be blamed/ostracised for having a demon child. Pre-vatican II Catholicism could be an odd place. Certainly there were no support groups and very few sympathetic psychiatrists.

Although I am very open about my miscarriage and anacephylic babies it amazse me how many women, only slightly older than myself, share their sad news of similiar births and tell me I am literally the only person they have ever told beside their husband. The public shaming of mothers' of deformed/dead babies is really not very far back in our past.
posted by saucysault at 1:31 PM on July 15, 2012 [12 favorites]


We cannot read a first-person account of a 50-year-old medical problem, and condemn the author using current standards. Else we might as well produce every history book in pencil, cos we'll be revising them every few years.

I can tell you that there's PLENTY in current COMMON medical practices and ethics that needs to be aired out and improved, that we really don't need to waste so much hand-wringing over a 50 year-old and very uncommon occurrence. And it's very clear to most that our approach to this sort of situation has improved in the interval.

I think that Dr Neumann was courageous and has done us a good service by presenting this challenging story. It's the Ford Voxes, who insist that such difficult disclosures must be accompanied by sufficient self-flagellation, who are impeding a more productive discourse.
posted by Artful Codger at 1:39 PM on July 15, 2012 [29 favorites]


I've said it before, I'll say it again: everybody in human history who didn't behave according to the exact ethical understandings of an early 21st-century upper-middle class person from either Western Europe or a coastal area of the US ought to be extremely ashamed of themselves.
posted by strangely stunted trees at 1:53 PM on July 15, 2012 [24 favorites]


Reacting with shock and dismay when a doctor tells the truth about what happened will, unfortunately, do nothing to stop it from happening again and again and again, because in many ways it happens because no one wants to talk about it

Yeah, you're probably right, but if someone told me they lied to me about my baby being dead and then talked about them like this I would literally find it difficult not to react immediately and violently. So...with that in mind I have nothing but disgust for this doctor and his assertion that he knows some woman wouldn't care for her baby because he didn't care for it. I don't really care if that's rational or not.
posted by the young rope-rider at 1:57 PM on July 15, 2012 [1 favorite]


This baby, who was living, was 'not compatible with life'? Doesn't even make sense.
The baby was not living, it was dying, and there is nothing anybody could do to stop that. Most such die even before they are born.
posted by Jehan at 2:13 PM on July 15, 2012 [5 favorites]


Not to be picky, but last time I checked most women seem to have two breasts. Besides which, it is quite possible for non parental units -- even men! -- to develop milk and feed babies if the nipples are stimulated.

True enough, but do you know any parents of infant twins? I do, and even with the excellent care and resources available to them, they're just holding it together. I'd hate to imagine them attempting to protect themselves from apex predators and starvation at the same time. Infanticide has always historically been a part of what Terry Pratchett called "the dreadful algebra of necessity."

I might add that I wasn't clear enough when I said that I thought that Dr. Neuman did the best he could. I don't believe that he did the best thing that could have been done -- that would have had to begin at the birth of the child, with full and frank disclosure. He did the best he could, which just wasn't very much.
posted by Countess Elena at 2:14 PM on July 15, 2012 [1 favorite]


So...with that in mind I have nothing but disgust for this doctor and his assertion that he knows some woman wouldn't care for her baby because he didn't care for it. I don't really care if that's rational or not.

While this is certainly natural and understandable, it is also something worth working to overcome. The universe is messy, complicated, and often violent and cruel. Our tiny world is populated by actors who often don't share our ethics. But they are human too, and struggling as we do to deal with it all.

It is a good thing to not treat doctors as gods. But it is a bad thing to blame people embedded in a past paradigm for acting in accord with the standards of their time. Sometimes there is no just solution. Most likely there is no God and we livei in an incredibly stable eddy in what is mostly a whirlwind of horror; if there is a God it's worse because while I can deal with the challenge of a randomly hostile universe the idea that it was deliberately made this way fills me with inconsolable despair.

The doctor in the OP had two choices, both bad. That he felt the need to write about it today says something abut the power of that paradox. It was after all fifty years ago,and he didn't have to bare his heart for the whole of humanity via the internet. He might have been a bit naive about the size of his potential audience, but he still didn't have to do it at all.
posted by localroger at 2:17 PM on July 15, 2012 [9 favorites]


This is terra incognita, always and everywhere. I don't necessarily want to be on Dr. Neuman's side, but I believe that he did the best that he could.

Yeah. I found the first story horrifying, but I was hoping that it was in some ways a discussion of how he and the field have changed. So I was not so judgy from that first piece he wrote.

Then I read the second, where he not only believes he did the best he could at the time, but that it was the best anyone could do at all, that no one made mistakes, etc, and I take back the sympathy I sort of felt after the first piece.
posted by jeather at 2:17 PM on July 15, 2012 [2 favorites]


7 Billion and counting: hard choices ahead.
posted by cenoxo at 2:17 PM on July 15, 2012


Perhaps we can excuse the mistakes of the distant past because there's literally nothing that can be done now except recognize they were wrong and try to do better. But if it's possible that people with these beliefs are still practicing, I don't think it's that more urgent to recognize they were wrong and try to do better.
posted by bleep at 2:26 PM on July 15, 2012


And, haha, um, that should say "I think it's that more urgent to recognize they were wrong and try to better."
posted by bleep at 2:27 PM on July 15, 2012


I wonder...it would be standard, now, to tell the parents, to give them the choice. And maybe because of that, because we have a protocol now, for how you're supposed to react --- palliative care, and allowing the parents to grieve, and to choose how to grieve, then maybe there would be a way for those parents to process something like this, maybe that's what would happen to pretty much everybody.

And maybe nobody would ever recoil in horror and be permanently traumatized by the experience of seeing a baby like that that was their baby, of having to deal with the time after as Neuman did.

I wonder if we comfort ourselves too much, presuming that's the case. Perhaps it would be now. But in Neumann's time, was it so likely? It depends so much on the individual....my inclination is the modern one, that it should be the parent's call. But I wonder if part of what makes this essay so terrible is the idea that maybe there would be people like that, people who'd never have another kid for fear of it, whose marriages would break apart. The failure would be on them, now, under our modern morality. Neumann's presumption is that everyone would break, ours that no one would. 13 days.
posted by Diablevert at 2:29 PM on July 15, 2012 [5 favorites]


I have some oogy chills wondering if those parents who never knew their child was born alive may now somehow find out.

I thought the same thing - what if that child's parents read this story and realized it was their child being described? I can't even imagine how they'd feel, believing all this time that their child was stillborn, and then learning the much worse truth.
posted by SisterHavana at 2:42 PM on July 15, 2012


The medicine of the time, especially in OB/GYN, was indeed paternalistic. My brother was born in 1965 with hydrocephalus and other complications, and they concealed this from our Mom for several days. (They would show her the baby all wrapped up so that you couldn't see anything). Perhaps they had some theory that the shock would be bad for her, and, hey, they have the white coats on, so that's SCIENCE.
posted by thelonius at 3:04 PM on July 15, 2012


There is a big mental difference between giving birth to a stillborn and giving birth to a hideously deformed thing that can only barely resemble a human baby. Perhaps they were thinking about sparing the woman the thought that she had made this happen, that her next pregnancy might result in something so horrible.

It was not a thing.

And while I agree that what the doctor and hospital did then were accepted practice, I think the fact that it still haunts him points us towards the reasons why it's not anymore.

What I find interesting is that his guilt keeps manifesting in a repeated declaration that the baby was a thing, that it was More Horrible Than You Can Imagine. I don't know, I have a pretty good imagination. I can imagine giving birth to a child so doomed and loving it anyway, even though my heart was broken. I can imagine wanting to say goodbye and give it as good and painless a death as possible.
posted by emjaybee at 3:04 PM on July 15, 2012 [11 favorites]


> Calling the child a monster may appear callous but is technically accurate. In fact the greek root meaning "monster" is "terato-" and chemicals known to cause significant birth defects are called "teratogens". In their quest to spare the feelings of layfolk, the p.c. police are actually encouraging the misrepresentation of severe defects by trying to couch things in "nice" words.

You say this as though the word "monster" isn't harshly pejorative. As gaspode says, the medical community has already changed the terminology, and I doubt they'd be swayed by your argument-from-word-origin.

Do you not think it's at least arguable that the terminology helped legitimize the idea that it was OK to lie to a mother about whether her child was alive? Can't we agree on an accurate term that doesn't also dehumanize those that are most definitely human?
posted by savetheclocktower at 3:18 PM on July 15, 2012 [4 favorites]


My heart hurts for everyone involved. I'm not religious, and not likely ever to be so, but I can understand how a person would embrace religion in the stark face of the truth that sometimes there is suffering, and no reason why.

.
posted by Mooski at 3:56 PM on July 15, 2012 [2 favorites]


Some facts:

1. This baby had a condition that was not compatible with life.

This baby, who was living, was 'not compatible with life'? Doesn't even make sense.
posted by not_that_epiphanius at 3:53 PM on July 15



I always took the phrase 'not compatible with life' to mean 'the person might live a few hours, or a few days, or even a few weeks, but inevitably the physical anomalies/injuries are going to catch up with him and kill him'.



Went down the wikipedia rabbit hole and this stuck out in an article about a man with an almost-normal IQ despite having essentially a sliver of a brain:

"What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a pediatric brain defect specialist at the National Human Genome Research Institute. "If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side."

Not that this baby ever had a chance to live, but underscores the arrogance of using such a phrase.
posted by melissam at 4:27 PM on July 15




There's a great blog I follow, Socially Inappropriate Mom, written by a woman whose daughter was born with holoprosencephaly (as well as a host of other issues). She has talked very openly about the guilt she's felt for not terminating her pregnancy, because the pain her daughter lives with is just staggering:

I think a big part of my guilt is that I knew about most of Aria’s problems fairly early in my pregnancy and I chose to have her anyway... At the time I was so hopeful. At the time I kept reminding myself of the cases I’ve read of children with missing brain matter who, by some miracle, only suffer minor cognitive delays. I told myself about the kids with severe hydrocephalus who weren’t deaf. I told myself that the stomach surgery and brain surgery would just be a small hurdle on the path to a productive and fulfilling life for Aria. I told myself that we were keeping her because we wanted to give her every opportunity in the world to flourish. I told myself all sorts of ridiculous shit.

Now I realize that we kept her for us. We kept her because we wouldn’t have been able to deal with choosing not to keep her. We wouldn’t have been able to live with the “what ifs”. Now she has to live with our choice. She lives every day in pain. It hurts her to be fed. It hurts her to be held. She has virtually no head control, likely will never walk, can’t see, can’t hear, and has something wrong with almost every organ. We have to give her valium four times per day to make life tolerable for her.


Every time I hear about folks like this man who functions in spite of only having a minimal brain, I think of a phrase that a boss I had at work used many years ago: "We can't fall into the trap of management by exception".

Phrases like 'not compatible with life' aren't arrogant. What's arrogant is believing that because one guy in France lives normally with a fraction of a brain, other humans born with similar conditions won't end up like S.I.M.'s daughter or the baby in the OP's article. He's a very rare exception. The others almost certainly will not be, and we can't manage our medical system like they'll all be exceptions and have fulfilling lives with very little brain cell matter.
posted by magstheaxe at 4:01 PM on July 15, 2012 [35 favorites]


Ahh, holoprosencephaly, our old Metafilter nemesis! We meet again.
posted by Justinian at 4:26 PM on July 15, 2012 [5 favorites]


Phrases like 'not compatible with life' aren't arrogant. What's arrogant is believing that because one guy in France lives normally with a fraction of a brain, other humans born with similar conditions won't end up like S.I.M.'s daughter or the baby in the OP's article. He's a very rare exception. The others almost certainly will not be, and we can't manage our medical system like they'll all be exceptions and have fulfilling lives with very little brain cell matter.

That wasn't the point of my comment at all, particularly since I have advocated giving women the option to terminate and to end the suffering of such infants several times in this thread. "Not compatible with life" refereed to the de-humanization of the child and dismissiveness of the child's pain. It's easy to throw up your arms and say there is nothing you can do if you believe something like that, instead of giving the child the best possible palliative care, which even humans that are not destined to live long health lives deserve.
posted by melissam at 4:26 PM on July 15, 2012


Wow, that's horrifying, magstheaxe. I really feel for her.
posted by desjardins at 4:32 PM on July 15, 2012 [2 favorites]



That wasn't the point of my comment at all, particularly since I have advocated giving women the option to terminate and to end the suffering of such infants several times in this thread. "Not compatible with life" refereed to the de-humanization of the child and dismissiveness of the child's pain. It's easy to throw up your arms and say there is nothing you can do if you believe something like that, instead of giving the child the best possible palliative care, which even humans that are not destined to live long health lives deserve.

posted by melissam at 7:26 PM on July 15


I apologize for misunderstanding your post, melissam. I agree that palliative care should never be denied to another human. I was thinking...well, you read my post, you can see what I was thinking.



Wow, that's horrifying, magstheaxe. I really feel for her.
posted by desjardins at 7:32 PM on July 1


In fairness, the blog isn't all doom, despair, and agony. SIM and her family truly love their daughter, and strive to make her life better every day. There's some truly uplifting stuff on her blog.

But the thing I like about the blog is that she's not afraid to talk very honestly and unflinchingly about the challenges her daughter and her family face daily. She's not afraid to state that choosing not to end her pregnancy was probably a mistake, and now her daughter is suffering for it. And she refuses to romanticize this disability, and try to say it's making her a better person, when she feels it's not. She's taking a pretty bold stance, since the common narrative for parents with disabled children is "oh, it's really a gift, I wouldn't change a thing, etc., etc."
posted by magstheaxe at 7:00 PM on July 15, 2012


I could write a Westphalia-length comment on this story but since I am on my iPad without a real keyboard I will keep it brief. Ford Vox's reply is interesting but like some earlier commenters I think he misses some points. One assertion that he makes that does not jibe with my experience is that most children with defects that severe would be diagnosed with ultrasound and subsequently aborted. That may be true, but a significant number of women still get no prenatal care, and thus not only don't know about problems early on but are more likely to have such problems. And even if you assume that all women in the US have easy access to abortion, I have seen some that not only refuse abortion no matter what, but also insist that everything possible be done for their child no matter how futile. So yes, children with that degree of deformity are still born from time to time and caring for them can be problematic. Fortunately the most severe birth defects have always been rare, so this sort of situation doesn't happen much.

The bigger question to me is what the point of the original article is. It certainly shouldn't be a surprise to anyone that medical ethics have come a long way since 1960. While the incident obviously made an impression on Dr. Neuman, he was a lowly intern at the time and since then has probably spent little or no time with newborns other than as friend or family. He really can't be expected to be an authority on just what was going on with this child. Additionally, he has apparently been ruminating on this incident for half a century; which details has he emphasized and which has he minimized or even left out? Memory is notoriously unreliable; unless he documented everything in depth at the time it happened, every detail in the story is suspect. As a psychiatrist he should know this. Did he just need to get this off his chest? Did he feel like stirring up some controversy for the hell of it? I just don't see what purpose was served by writing and publishing this article.

I'll wrap this up by assuring everyone that pediatric anesthesia is a recognized field and has been for some time. I have a colleague who trained in the late 1960s and he would never claim that babies feel no pain. I realize that view has not always been universally held, but concern about it goes back a long way among at least some physicians. Also, palliative care for newborns is much more accepted now. I have another colleague who regularly publishes papers on that topic in the neonatology literature. If this baby had been born today it would be handled very differently.
posted by TedW at 7:57 PM on July 15, 2012 [10 favorites]


Thanks for commenting, TedW. Your perspective is informative.
posted by the young rope-rider at 8:10 PM on July 15, 2012


I don't understand where the idea that babies don't feel pain even came from in the first place.
posted by bleep at 8:24 PM on July 15, 2012


"Look at this crying little person! He cries when he's hungry and when he gets stabbed by diaper pins. That doesn't mean he feels pain, though, of course. We don't know why babies cry, it's a mystery."
posted by bleep at 8:25 PM on July 15, 2012 [1 favorite]


There were monsters in that hospital, but a newborn baby wasn't one of them.

My first baby was taken straight to NICU after birth, and the pain, the terrible pain of not being able to hold him, comfort him, and protect him from the necessary medical things that had to be done to him - leaving him suddenly all alone in the world - and that is nothing to what this baby suffered. And his mother didn't know.

I can't read the other articles until I stop crying, but jesus damn, Neuman still thinks the obstetrician did "the right thing"? What a broken human being.
posted by Catch at 8:40 PM on July 15, 2012 [7 favorites]


I don't understand where the idea that babies don't feel pain even came from in the first place.

I'm not turning up any succinct citations at this late hour, but learned about this a bit in my human development courses about how this belief was turning up in the 20th century (as opposed to earlier eras.) For one thing, administering anesthesia to a tiny infant is dangerous business, and there was a belief that infant amnesia (which is a real thing) meant that the anesthesia wasn't worth the risk. (Actually, never mind the cruelty, it turns out that infant surgery without pain relief is correlated with later health problems.) It's terrible, but you can see how medical professionals with any degree of empathy who performed these procedures would gravitate to the belief that responses to pain were 'reflexes.'

My professor also mentioned (this is the reference I can't dig up) that the first pain studies on infants done in modern medical science were performed on brand-new neonates (as opposed to, say, the 8-day-old being circumcised)...but since sedation opiate pain relief was common for deliveries, those neonates were often sedated as well.
posted by heyforfour at 8:55 PM on July 15, 2012


While this is certainly natural and understandable, it is also something worth working to overcome.

Naw, I think the human desire to protect our helpless offspring is one of the things that makes us human and working against it leads to people trying to cut fingers off babies using strings.
posted by the young rope-rider at 9:00 PM on July 15, 2012 [3 favorites]


So they didn't provide anesthesia because it was a new technology and very risky (okay), but given that the baby looked like it was pain and that made them sad, they made it okay by coming up with an irrational, untested belief that the baby wouldn't remember AND couldn't feel anything anyway. Despite the fact that babies have been crying when you stick them with things since as long as there have been people. It's groupthink.

Yes yes this was all in the past and there's nothing we can do about it now et cetera but I think it just reminds us that we all have to be vigilant against groupthink unscientific attitudes when it comes to making decisions about human suffering, especially in fields that claim to be scientific.
posted by bleep at 9:09 PM on July 15, 2012 [2 favorites]


The other aspect of this that horrifies me is how casual the decision to lie about the baby's death was - how many seconds do you have, in the delivery room, to make up your mind and get the baby out of sight before it moves or cries?

Neuman has had 50 years to rationalise that decision, and placate himself with sophisms, coming to a twisted conclusion. But is he deluded enough to believe that the obstetrician in charge took any time to consider anything but "Monster! Kill it."
posted by Catch at 9:16 PM on July 15, 2012 [1 favorite]


For those that don't know, a comment (not a post) speculating about holoprosencephaly ended up being one of the most infamous deletions on metafilter.

I wonder about infants and pain, though. Who's to say that adults who are put under aren't "feeling" pain but just unable to react to it or remember it?
but given that the baby looked like it was pain and that made them sad, they made it okay by coming up with an irrational, untested belief that the baby wouldn't remember AND couldn't feel anything anyway
Looking at the wikipedia article, the belief was based on the fact that their nerves are apparently unmyelinated. It's not clear why they thought this would be the case, in non-infants C fibers transmit pain and are still unmyelinated.
posted by delmoi at 9:23 PM on July 15, 2012


And yet someone still felt the need to invent safety pins.
posted by bleep at 9:29 PM on July 15, 2012


I do have pictures of her I look at occasionally and I remember her as being beautiful; the much-wanted product of love from my husband and I, even though I know there is literally no one else on this earth that would agree.

You know, saucysault, I think that there are people who would agree. I think there are way more people who would agree than you might think.

The human mind and heart have a flexibility he does not recognise.

Very true.
posted by cairdeas at 9:33 PM on July 15, 2012


One of the best things about feminism is how the number of women in power in an organization really cuts down on the number of atrocities that organization commits.
posted by cairdeas at 9:35 PM on July 15, 2012 [4 favorites]


She's taking a pretty bold stance, since the common narrative for parents with disabled children is "oh, it's really a gift, I wouldn't change a thing, etc., etc."

I'm glad someone's brave enough to say it. My mom would never tell me that she would have aborted me if she'd known what my first years of life were going to be like, but if ultrasound had been available I think she would have. I mean, they were hell on my parents too.
posted by desjardins at 10:07 PM on July 15, 2012 [2 favorites]


I work in the field of sociology of medicine, and spent a couple of years researching the establishment of the medical subspecialty of teratology, which does indeed literally mean "the study of monsters." The idea that we should not find this appalling seems to me to be a peculiar misreading of moral relativism. In 19th century early teratological texts, infants with pronounced physical differences were referred to using the dehumanizing pronoun "it" all the time. Descriptions of the reactions of horror of nurses and visitors are often included, ostensibly to illustrate the dramatic nature of the "malformations," but functionally to frame the author as a cool, rational man of science--one who caught a fascinating case, to dissect and add to his personal collection. How the infant died is rarely discussed, but reading over 19th century teratology articles it is disturbing to note how many of the infants whose dissections are presented had conditions that were by no means fatal. As an intersex person myself, one of the things that drew me to investigate 19th and early 20th century teratology was the substantial number of intersex infants reported upon, many of them dissected, without any explanation of how the child had died.

In the 19th century, many teratologists got some of their specimens by purchasing "pickled punks" ("freakish" babies displayed in jars) at popular traveling freak shows. This permeability is also evident in the medical names given to conditions, taken directly from the freak shows, such as "mermaid baby" and, as in this case, "cyclops baby." Like freak show barkers, the early medical teratologists made their fame on the weirdness of their specimens, and made much of them being bizarre and inhuman in their medical journal articles.

In the early 20th century, teratologists were at the forefront of eugenics.

This history lurks in the background of Dr. Neuman's confessional. I think we should no more refrain from passing judgment on his attitudes and behavior than we would fail to criticize eugenics or medical torture by Nazi doctors of their "subhuman" patients.
posted by DrMew at 10:32 PM on July 15, 2012 [14 favorites]


Maybe no one else will say it, but I think they did the exactly right thing in hiding it from the parents. If I ever gave birth to a baby that deformed, I would hope like hell the hospital staff would do the same thing, and smother it in another room and never tell me. The only thing they did wrong was not giving it a quick injection, rather than leaving it to slowly die. But Catholic hospitals sadly don't believe in euthanasia.

Because really, what's telling the parents going to do? It's not like you can put your baby out of its misery, even if it is horribly deformed. Even if you know it will never have a fulfilling life. You have to try. You have to pay for expensive medical care, or someone will come after you for child neglect.

People were encouraged to put Downs children in homes in the 1960s? I think we were much more merciful then than now, where we encourage people to take them home and spend the expense raising them - and don't give them the option to do things differently.
posted by corb at 10:45 PM on July 15, 2012 [1 favorite]


The many thousands of happy families which include members with Downs are likely to disagree with corb's sentiment.
posted by not_that_epiphanius at 12:01 AM on July 16, 2012 [2 favorites]


Some families with Downs children may disagree with my sentiment, and that's fine. I know that one of my former partners' family would certainly have benefited from the choice. Having a Downs sibling destroyed his parents' lives and is now destroying his. It has literally sucked out all of their happiness, as well as their meager financial resources, having an adult barely- child that will never be able to support themselves, ever, that they can never abandon, that they are always responsible for.

I'm not saying people shouldn't be able to take Downs babies home if they want to. I'm just saying that people who weren't warned in enough time to abort should be able to drop them off at a home and be free of all responsibility for them.
posted by corb at 12:10 AM on July 16, 2012 [1 favorite]


I'm just saying that people who weren't warned in enough time to abort should be able to drop them off at a home and be free of all responsibility for them.

Oy. I hear what you are saying about the unhappiness, financial problems, stress. But, this doesn't seem like it will be a very fruitful approach for a good conversation about these things. The above sentence read like talking about an unwanted piece of trash. Regardless of everything else, the reality is that the child is a newborn baby who is that person's son or daughter.
posted by cairdeas at 12:27 AM on July 16, 2012 [4 favorites]


One of my BFFs found out this week that the child she is carrying has Trisomy 18 & Potters Syndrome. The child is already beginning to die in utero and she is being advised to have a D&E to reduce the risk to her own health. She is overwhelmed with grief and horror but wants to make sure that her child does not suffer any more than he already seems to be. Still, she is scared to look at her baby when he is born because she is afraid that she be traumatized by the sight of his birth defects.

I've read that many women who don't get to see their child after it's born have more problems later because they are tormented by the "what if" and their own imagination filling in the blanks. I've advised her to try and preserve some physical memento of him - a picture of him swaddled with all of his defects wrapped out of sight, a handprint, even. She will want to be able to remember that he was more than the sum of his numerous birth defects; he was her much loved and wanted child who was taken before his time.
posted by echolalia67 at 12:38 AM on July 16, 2012 [2 favorites]


I was a student midwife in Lancashire, England in 1974 and I remember the birth of an anencephalic baby (there were no ultrasounds then)
pretty horryfing
The baby was presented to the mother with the head completely covered and told it was going to die because of it's malformation which was incompatible with life
The mother did not want to touch the baby, she left the hospital to go home the following day
The baby was kept in the nursery, fed dextrose water - no milk - and sedatives
it was very difficult and painful for all the staff because we knew it was dying
That was then and I'm not particularly surprised by the article
posted by hopefulmidlifer at 5:39 AM on July 16, 2012 [1 favorite]


addendum _ we were ordered not to feed it milk by the doctors, so in effect slowly starving it
which was ethically very difficult for the nurses but not the drs

there was no other solution at the time
posted by hopefulmidlifer at 5:53 AM on July 16, 2012 [1 favorite]


I think we were much more merciful then than now, where we encourage people to take them home and spend the expense raising them - and don't give them the option to do things differently.

Parents have the option to give their children up for adoption. You don't seem to be extending your assessment of mercy equally to the people (and people with Downs Syndrome are people) who would have no choice but to spend their entire lives institutionalized.

The expense. Jesus. You're really coming off as heartless here.
posted by the young rope-rider at 5:56 AM on July 16, 2012 [2 favorites]


Oy. I hear what you are saying about the unhappiness, financial problems, stress. But, this doesn't seem like it will be a very fruitful approach for a good conversation about these things. The above sentence read like talking about an unwanted piece of trash. Regardless of everything else, the reality is that the child is a newborn baby who is that person's son or daughter.

But isn't this the conversation essentially about abortion, just moved to the day of birth for those people who had no idea what they were growing in their womb until it is born? (Not specifically the "is it legal to kill it", but more, pro-lifers saying "It's a baby!" and pro-choicers saying, "It's a collection of cells, and I do not want it!")

I mean, personally, I believe in strenuous medical testing, and will abort if I am found to be pregnant with a fetus with Downs. But there are states in the US now where doctors are allowed to lie to women about their pregnancy, if they think that if they tell the women, they'll abort. And there are women who don't get the opportunity to find this out. And there are ones that slip through the cracks, so the woman is surprised when she delivers.

Parents have the option to give their children up for adoption. You don't seem to be extending your assessment of mercy equally to the people (and people with Downs Syndrome are people) who would have no choice but to spend their entire lives institutionalized.

I think that parents should certainly have the ability to give the severely disabled child that the state is forcing them to keep alive into the care of said merciful state, rather than simply the ability to foist their problem off on other non-state actors. But it's a real question: how many people should suffer for one person to grow up into a kind of half-life? Parents, their natural children, maybe even their natural grandchildren? And you can mock the idea of cost being a factor all you want, but the fact is that the cost of the care of a Downs child can be the difference between thriving and struggling, or struggling and not being able to really make it well at all. It can be a prison sentence for people who are living full, complete lives, to have to give them up and be prisoner to someone who can never comprehend the sacrifice they are making. It is hurting several lives, in exchange for a partial one.

Maybe wanting there to be another option is cold. But that doesn't mean it's wrong.
posted by corb at 6:37 AM on July 16, 2012


how many people should suffer for one person to grow up into a kind of half-life?

I think possibly you might not know anyone with Down Syndrome? that is my charitable reading of your comments.
posted by gaspode at 6:47 AM on July 16, 2012 [3 favorites]


But it's a real question: how many people should suffer for one person to grow up into a kind of half-life?

By this metric every single middle-class (and richer) baby born in the US should be killed, because we all exist as parasites on the suffering and hard work of others. Unless you've done something amazing with your life, people break their backs and ruin their bodies just so you can eat and have new clothes and they ruin their health and their environment so you can have electronics to type on. How many lives have to be ruined so you can sit here and type about how people with Downs Syndrome live "half lives"?
posted by the young rope-rider at 6:56 AM on July 16, 2012 [2 favorites]


I think possibly you might not know anyone with Down Syndrome? that is my charitable reading of your comments.

I've met them. Aside from the one example I mentioned above, I've even seen some of the ones characterized as high functioning - ones that work with some sort of work program, where they come work at people's office for free and do menial labor to get experience.

It was pretty awful, though. They were certainly not functioning anywhere near like adults, though I think some were in their thirties. If they got frustrated at something, they would start howling. They would literally destroy bathrooms and track feces back into the office. They had no sense of personal boundaries and would harass women. (Sure, admittedly I'm sure it was non-sexually on their end, but NO TOUCHY is a really important standard of conduct.) They would shout at people who didn't answer their questions in the way they wanted to be answered. It made for a really awful office experience, and our boss quickly stopped doing it.

By this metric every single middle-class (and richer) baby born in the US should be killed, because we all exist as parasites on the suffering and hard work of others.

Sure, but someone else (their parents) compensates those others on the baby's behalf, and they will grow up to lead rich, full lives, and be able to compensate others themselves. It is very different.
posted by corb at 7:07 AM on July 16, 2012 [1 favorite]


Because really, what's telling the parents going to do? It's not like you can put your baby out of its misery, even if it is horribly deformed. Even if you know it will never have a fulfilling life. You have to try. You have to pay for expensive medical care, or someone will come after you for child neglect.

Yeah, how about make sure their child is at least hydrated and doesn't suffer before it dies? I think almost everyone agrees this was a different time with different standards, but I'm amazed at people who think that this situation would be OK in modern times. I suspect you didm't even read the article, because there was absolutely no chance of this child living at all. There are serious debates about non-resuscitation of borderline cases (children who are theoretically capable of living with heroic medical intervention, but will continue to suffer and be non-conscious throughout their lives), but this was not a borderline case.

In some of these cases, parents override a doctor's advice to not resuscitate, with sad consequences. This happened in my own family with a cousin who was born with a cephalic disorder. When she was an infant they re-started her heart against doctor's advice, and she lived over a decade without any sort of consciousness, ability to move, at least in a state something like dreamless sleep, but still not a real life.
posted by melissam at 7:20 AM on July 16, 2012


Corb, you might want to do some reading by disability advocates. The language you're using here ("half-life, referring to people as "ones") is dehumanizing and shockingly bigoted. And if you use a cost/benefit analysis to determine the value of people's lives, you end up in some pretty ugly places.

I suggest starting with Harriet McBryde Johnson's Disability Gulag. I also quite like Worth Living. Worth Living, I think, is especially relevant to your contempt for disabled adults who aren't functioning like adults.

"You think it's humiliating, degrading, undignified, to let another person wipe your behind. I know yours is a common attitude, but to me your revulsion seems - well - neurotic. What's the deal? When you can't wipe yourself, of course someone else does it for you. Did you degrade your infant child when you wiped that silky rump nice and clean? Were you degraded? Certainly not. There's no shame, and without shame, there's no humiliation.

If you don't believe me, believe the Sun King. In periwigs and silk brocade, Louis XIV's noblemen competed for the privilege of tending to his personal hygiene, even though he was perfectly able to do it himself. Personal assistance can be a grand luxury. It brings physical sensations that are not the least bit unpleasant. If you'd open up your imagination, you'd probably come to envy my morning routine."

I would certainly agree with anyone who says that some disabled people lead difficult, humiliating lives. But, so do some non-disabled people. And one of the main factors in whether a disabled person's life is full and rich or humiliating and empty is the support they receive from society. When people like you just want disabled people to go away, then people like Harriet McBryde Johnson end up in institutions.
posted by Mavri at 7:36 AM on July 16, 2012 [6 favorites]


[Folks, if you are not trolling do not make this thread all about your personal highly provocative feelings on a subject. Say your piece and then join the conversation.]
posted by jessamyn at 7:36 AM on July 16, 2012


, I've even seen some of the ones characterized as high functioning

Gods, you sound like you're talking about animals in a zoo. I too have worked with people with Down Syndrome and had nothing like the experience you had.
posted by gaspode at 7:50 AM on July 16, 2012 [2 favorites]


I was surrounded by differently abled children in school (they were mainstreamed in my catholic school back in the seventies) and now as an adult in both in my work and my neighborhood (and my children's school). To me, everyone is just part of the spectrum of human existence. Part of this natural integration is because there is an established network of government support for families and socialised medicine. No one (or two people) should have to raise a child alone, especially if they are lacking resources or the child will need a higher than usual resources.

Although the practices he describes seem so outrageous to me (seriously, no palliative care over 13 days?) I experienced something similar at the birth of my anacephelic daughter. We did not find out about her problems until I was in labour and my medical care was transferred from my excellent midwife to the obstetrician on duty. As soon as she heard who it was, my midwife offered me the option of going by ambulance to another hospital 30-40 mins away. He was known for his callousness, unfortunately, even though he was less than five years into his practise. He had multiple mothers in the ward and he left me to labour fruitlessly in the last stage of labour because he thought it would be better to look after the living babies. My pain, and the pain of my baby, just didn't register with him as important. After breaking my water I delivered (with a resident he brought along but didn't even think to introduce) and he quickly left the room, but before leaving he told me I could make an appointment to meet with him in a few weeks, "but be sure to identify that you had a dead baby, I see so many women I can't remember who is who.". Apparently he has improved, but it is appalling he was allowed to be there at all.
posted by saucysault at 8:34 AM on July 16, 2012 [2 favorites]


But isn't this the conversation essentially about abortion, just moved to the day of birth for those people who had no idea what they were growing in their womb until it is born?

Yes, actually, I noticed that the language in that post was similar to the language that people use around abortions of early-term fetuses. So much so that I wondered if it was really meant to show us how horrible and dehumanizing abortion is? I really hope that wasn't the case.
posted by cairdeas at 9:02 AM on July 16, 2012


Yes, actually, I noticed that the language in that post was similar to the language that people use around abortions of early-term fetuses. So much so that I wondered if it was really meant to show us how horrible and dehumanizing abortion is? I really hope that wasn't the case.

No, I fully support abortions, I don't think that they are horrible or dehumanizing at all. I think they can be lifesaving for women in many, many circumstances. I don't want to derail, but I did want to clear that up.
posted by corb at 9:09 AM on July 16, 2012


Rather than warehouse anyone, corb, we could actually create a humane system of healthcare that would not bankrupt families and would provide them the assistance they needed in their homes and in well-kept facilities (and would also ensure that their children did not end up homeless, abused, or dead after they are gone). There are lots of better ways of dealing with lifelong disabilities than "shut people with them away where corb doesn't have to deal with them."

Sheesh.
posted by emjaybee at 9:15 AM on July 16, 2012 [1 favorite]


Okay. Then, about "moving the conversation about abortion to the day of birth," that is a road that I (and most people in this day and age, I think) really don't want to go down. Right now, we have a generally accepted idea of when humanity starts. I really don't want to move that line to make born babies inhuman, or less human. Disability or not. If we start saying that disability is something that makes someone less human - and therefore rightly subject to less than human treatment, we are starting to go in a really terrifying direction. If you start going in that direction, you can't just stop at the "other" people you think should be classified as less than human. The momentum in that direction eventually comes to include your group. Let's not go there, please.
posted by cairdeas at 9:35 AM on July 16, 2012 [1 favorite]


hmm - I've met some very happy kids and parents with Down's syndrome and their parents greatest worries are what will happen to them when I'm gone , (since they no longer die early in life) and there aren't that many good institutions around

I thought the subject was end-of-life care for a fullterm severely handicapped baby who is unable to survive ?
posted by hopefulmidlifer at 9:40 AM on July 16, 2012 [1 favorite]


I recognize that medical ethics have come a long way in the last 50 years, but the paternalism of this case just sticks in my craw. It was the rule, not the exception, for doctors to lie about live births of babies with certain deformities or disabilities, and to lie about the sex of intersexed babies (as DrMew mentions above, some of whom may have been killed on that basis alone, many more of whom were operated on without the parents' knowledge or consent to make their genitalia appear more ordinary).

Yes, the infant in question here was certainly going to die, and yes, there was confusion regarding whether infants could feel pain at the time, and yes, there may have been social consequences for having given birth to a baby with severe birth defects, but none of those are valid excuses for paternalistically controlling the information about the baby and the fact that Dr. Neuman doesn't even recognize that paternalism is bad in his reflections 50 years later is appalling.
posted by notashroom at 1:57 PM on July 16, 2012 [4 favorites]


I'm glad someone's brave enough to say it. My mom would never tell me that she would have aborted me if she'd known what my first years of life were going to be like, but if ultrasound had been available I think she would have. I mean, they were hell on my parents too.

posted by desjardins at 1:07 AM on July 16


Yeah, my mother was always very pro-choice, but she told me before she died that if she had known some of the things way back then that she knew now about autism (such as the probability rates for couples who already have an autistic child to have another one, and what autism looks like on the low end of the spectrum), she would have had her tubes tied right after I was born and my younger brother would never have existed.

I am glad you're here, desjardins, and I'm glad my li'l bro is here, too. But I do wish my mom would have had the choice.
posted by magstheaxe at 2:12 PM on July 16, 2012


Yes, actually, I noticed that the language in that post was similar to the language that people use around abortions of early-term fetuses. So much so that I wondered if it was really meant to show us how horrible and dehumanizing abortion is? I really hope that wasn't the case.

Well, what's the difference? The baby was missing a large part of its brain and with any luck had absolutely zero awareness of its environment or subjective experience of pain. He or she may have been human, but in what sense were they a person?

Then, about "moving the conversation about abortion to the day of birth," that is a road that I (and most people in this day and age, I think) really don't want to go down. Right now, we have a generally accepted idea of when humanity starts. I really don't want to move that line to make born babies inhuman, or less human.

Whenever these topics come up, I get the sense that people are aware that their opinions are more or less arbitrary and that if they followed the logic of their arguments consistently they might be compelled to move the line one way or the other. It feels like we're being asked to be deliberately incurious about it and avoid following any chain of reasoning too far lest it lead us to an unpleasant place. I can understand the motivation for this but I don't think it's entirely honest or really sustainable to basically say "look, just don't think about this too hard".
posted by L.P. Hatecraft at 6:27 PM on July 16, 2012


Normally I would be happy to talk about it more L.P., but in this thread it's a derail. I shouldn't have even made those posts you're quoting. If you want you can memail me, though.
posted by cairdeas at 7:41 PM on July 16, 2012 [1 favorite]


That was a shockingly frank story, but not, to me, shocking that a doctor should say those things, or think them, only that he'd share them with a general audience. This is how doctors talk to each other and I've heard it before.

I also once attended a birth of a baby who was born with multiple severe deformities that were incompatible with life (as medical professionals prefer to put it). The baby's sex was not immediately evident, although I believe an autopsy revealed sex organs. The baby died during labor, which made the process simpler for everyone - if not necessarily easier for the parents. I wonder if they would have found more peace if they could have held a living baby for a few minutes. They did hold their dead baby for several hours, and cried and held each other. The hospital staff were respectful but uncomfortable and avoided the room - doctors and nurses are busy and, in my opinion, profoundly uncomfortable with sickness and death.

I'm not sure what palliative treatment would have been better for the child in this story. Life-extending care, including hydration, would not necessarily make things better. Certainly the parents should have gotten to make the choice, but that is actually a fairly meaningless sentence. We think we have "choice" about medical matters but for the most part we all go along with the first recommendation we hear and few of us are equipped to do the kind of research necessary to make a meaningful decision of this nature in a moment of crisis.

The big difference between then and now is that the parents would see the child, but I don't think they'd really have much meaningful say in its care. (Unfortunately there is not a widely-accepted gender-neutral pronoun. Otherwise maybe the author of the original article would have used that instead of saying, "it".)

I didn't find this story horrible, because it wasn't very surprising to me. Doctors are taught to think of people in pretty de-humanizing terms and even if they weren't, when your job is life and death, you have a different relationship to these decisions that most people do.

I wish all babies, those who are destined to die in a few days and those who are destined to live, were treated as unique, wonderful individuals who deserve compassionate care and that every baby's parents had meaningful involvement in the decisions that impact their children's health and well being, but that's not the case.

That's what this article made me think about.
posted by latkes at 9:55 PM on July 16, 2012 [3 favorites]


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