What is your opinion of medically stopping the growth process of severely disabled patients?

I think it’s just fine if that’s their choice. They have tremendous dedication to their children, and if this is another procedure that can help their quality of life – so be it. I don’t see the problem.

But I would like to think it would only be an option in extreme cases.

It’s not my family, I won’t judge.

They dehumanized their daughter (in a very kitschy way, by transforming her from a human being into a “Pillow Angel” – excuse me while I vomit) and then they performed surgical experiments upon her.

Remind you of anything? Goebbels and Streicher had to dehumanize Jews before Mengele felt free to do his little surgeries, too.

@pdworkin: You’re joking, right? The first part, fine. I can accept your opinion. It’s yours. But comparing the parents to nazis? Really? Sigh.

Actually, it’s not her parents specifically that concern me. It is the mindset of dehumanizing the handicapped in order to transform them into something more convenient that I object to. The Nazi comparison is a little hysterical, but it makes the point. The issue is: who is a human being, entitled to human rights, and how do we determine that?

@pdworkin: I think it’s merely an effort to continue to act as a parent to their child. Instead of handing her off to a series of nurses and caretakers. And I can fully understand that need.

@pdworkin That is exactly what first came to mind (my people were Mengele’s favorites, by the way… he had a “liking” for us which is not a good thing. Goebbels hated us just as much as the Jews, us being one of two people in the Final Solution itself) but only for a minute.

However, in this one case it is not to harm or torture… the reasons and methodology are completely different. In this case it is for ease of taking care of the patient. The parents could not have done so at home without it and she would have had to be institutionalized. The problem to me is the precedent. If this is ok, where does it stop being ok? How far is the envelope pushed?

I am more in agreement with @asmonet on this one… this one case.

However, again, who decides when such measures are taken? Who is the judge and what is the criteria? That is where my problem develops.

Well, @asmonet, you and I often disagree. In fact, once you tweeted that you “fucking hate pdworkin”, so I don’t expect that we will be finding much common ground.

@Arisztid: I would think only the parents are fit for that role.

@pdworkin: You were pissing me off that day. :)

I don’t hate you, really. But I don’t think you bringing my tweets from a separate site that I don’t interact with you on is in very good form. That’s not going very far towards us getting along. I’ve tried to be civil to you, try and return that courtesy.

@asmonet I think that it would have to be the parents and the medical community.

I can easily see parents of much less disabled children doing it when the child has a chance of some degree of success or out of pure sadism. There are parents like that.

I can see the medical profession doing it out of desire for money.

That is why this case is a disturbing precedent to me.

@Arisztid: I see your points, and completely agree. :)

We’re on the same page, darling.

I haven’t read the article, but the notion is interesting. I know a family that has an adopted son with fetal alcohol syndrome. He is mentally at the level of about a five year old on most things, emotionally he is all mixed up, and he can seriously lash out, even becoming violent. He is now 18 and larger than his parents, both of whom have physical handicaps as well. He could choose to do something they are trying to keep him from doing for his own safety, and they can’t physically stop him, not only that but he could seriously hurt them. I don’t think I see these procedures as being ethical, but it certainly would have been a useful approach in this case.

I find this totally unacceptable, they cut off her breasts too! Maybe, others can give their input and change my mind, but as it stands, it is totally unacceptable, and I would never agree to this, for one of my children. Like they said, “it’s dehumanizing.”

I wish I had the stamina of @dalepetrie. I would then take the time to discuss this fully. But I will say that I have examined this issue, these parents, this daughter and her syndrome and their solution in a class I took last semester in Cultural Medical Anthropology. About 30 students and a Professor (who was the mother of a child with severely disabling cerebral palsy herself) spent three days reading and talking about the issues of personhood and disability. This is just to let you know that my earlier remarks aren’t reflex, kneejerk responses.

@Snarp I would only even consider this if physical maturity did no good for the child. If the child could get any benefit from his/her physical maturity, I would not do it. I do not think I would do it for a child who can run and play like I would think a 5 year old could. Conversely, the child you describe with FAS is, as you said, violent. That is one of the hallmarks of FAS.

@smashbox I do not know what I would do if I was her father. In another article about this, it was described that it came down to the girl being institutionalized for the rest of her life if she reached physical maturity, this measure being done so she could be cared for by her parents.

I do not remember why they did the double mastectomy but, unless there was a direct problem with breast growth, I would not agree to that.

I, literally, cannot put myself in the parent’s shoes and think “what would I do?”

@pdworkin I never think that you are speaking off the cuff.

Given that we now have proof that it can be done, I am highly disturbed by the idea.I would much rather see parents given extra help to care for their children, even as they mature, than to see this. As the aunt of someone with a severely disabled stepson who is now entering puberty, I felt a need to comment.

They currently are having to teach this ‘boy’ (mentality of a 6 or 7 year old) about his body, and what is right and wrong to do, as well as when. It is not easy to handle. But they are managing, because they have to. He is not institutionalized, so they are the main caregivers.

As for this particular situation… well, let’s break it into ‘what if’s’ a bit. What if the parents die? Who cares for the forever young child? Will she be institutionalized? I can see that causing it’s own set of problems. What if a medical breakthrough occurs and she could be ‘cured’ of her mental issues? Should she be denied it, so she can never have issues with being a child for the rest of forever? Or should she be cured, and then either be a forever child or have to undergo countless treatments and surgeries to live some semblance of a normal life?

What if she were not as bad as the parents said, and they just wanted a little girl forever? Who tells them no? The doctors? If that were to be trusted, then there would be no black market of human parts… and there is.

Now that it has been done, it opens up a lot of darker issues, given human nature. If it has been done, it will be abused. I see pedophiles, scammers, and more, looking greedily at what has been done. And trying to figure out how to cash in on it.

Thanks for the thoughtful answer @Keysha.

@Keysha you break down a lot of the specifics and problems. I shall give my opinion in order:

1) I consider your nephew to get benefit from his physical development so, to me, the sort of thing in this article would not be an option.

2) your what ifs:
a. Who gets the child if the parents die? Here lies dragons. Does the child go to a proper institution or to a pedophiliac uncle who has been waiting for a chance and can get her because he is “blood kin”? Wherever she goes, who is going to speak out for her if she is sent to a pervert? Who is going to know?
b. What if a medical breakthrough comes through and the patient can be cured? And there lies more dragons. That is one of the big issues I have. I have the exact same problems that you do.
c. What if she were not as bad as the parents said? Here lies another dragon. Add to that, how much did they pay the doctor to agree?

3) Back to in general:
a. Body parts. Guess what… another dragon.
b. Pedophilia. A huge ass dragon. I can easily see pedophiliac parents conning (or bribing) doctors to agree to this for that reason.

@Arisztid: As I understand it, you can’t undo that kind of damage to an organ. Particularly the brain. There are developmental milestones that if missed are not able to be revisited. A cure may help others, infants. But I very much doubt it would help those who have grown up with it.

This procedure will improve the child’s quality of life by making it easier for the parents.

Thank you for providing a link to the story details!

I think this treatment was abhorrent and as it turns out illegal, according to the story.

It appears the parents were motivated by the difficulties with which they would have to cope as she grew to adult size. It had nothing to with any risks to their daughter.

I am even more shocked that physicians agreed to proceed with such mutilation. Most hospital legal departments, I would think, would counsel against allowing such procedures where it was not clearly in the patient’s interest.

The exposure of this case is likely to deter doctors and hospitals from carrying out such sets of procedures in the future without prior court approval. I sincerely doubt that such approval will be forthcoming.

I think the parents should be required to submit to third part supervision to make sure no further ”shortcuts” are taken in her care.

Without having read the article, I understand the concept and the parents’ desire… and need. For example, parents of severely autistic children often wonder… what happens when this child grows to physical maturity, and I / we can no longer control him by physical restraint? What about when he grows to sexual maturity and takes a liking to a little girl? And has no internal controls to tell him what is right and wrong. At that point, he’s likely to do something that will definitely take him to a place no one wants him to be.

@Keysha, I understand your desire, too, that “you’d like to see the parents get more help”. I’d like to live in Candyland, too. But we don’t, and those parents aren’t getting the help they need, either.

@pdworkin has a point of view… which I don’t agree with in this case. I don’t think that what the parents are doing (and until I see evidence to the contrary I presume that they are loving parents, like most parents all over the world) is “dehumanizing” in any way.

@Arisztid, it’s a good question. A hard one without easy answers, but worth discussing.

@asmonet The kicker is at this time such is irreversible. For the foreseeable future it is. However, we cannot predict the future.

@Dr_Lawrence I think a better way of handling this would have been to make affordable care available for the child as she matured. The patient, with proper in home nursing care, could have quite well been cared for. <rant = “random”> It is sad that such care is not available for many people because, in America, we cannot afford it. </rant>

I hope that, at the least, this case brings other such cases to greater consideration.

@Futomara It shall in this case but Keysha’s concerns are truly valid. I hope they do not come to pass.

@CyanoticWasp Thankyou. Ever since I read of this case, it is something I think about.

This is a doctor playing God at the request of two people who are not the patient.

@Arisztid: I doubt it’s within the near future, or would be in time to help this generation. Besides you’re saying we shouldn’t do this in case we can make them better later? I say, why wait on a miracle that may never come? Do what you can, while you can.

@CyanoticWasp It might be instructive if you visited the parents’ web site about their Pillow Angel, and read it critically. In my opinion it is very revealing as concerns their motives, which I believe were almost entirely selfish. I’d be interested in hearing what you think after you see that.

@asmonet Actually I am saying that I am torn on this. I understand why it is done and see how it can be beneficial, but all of @Keysha ‘s points are valid.

I saw the original story on this awhile ago and I have given it a good deal of thought and I am still torn about it. This is one of the few issues about which I cannot form a solid opinion.

@Arisztid: Perhaps I was skimming too fast, thanks for clarifying for me. I can completely understand not finding solid ground either way in a situation like this. So, I’m for the option and will let the individuals decide what’s right for themselves.

@asmonet No problem. :) I am hoping that all of the moral, ethical, and medical quandaries this case has opened shall cause the medical community to evaluate any such future cases with more care. I cannot imagine the protocol for this, from criteria for such action to familial resources, care if the primary caregivers pass on, etc. I would not consider the current foster care system to be an option of caregivers. There are too many abuses in it.

I am glad that I am not the one to make the decision.

I remember reading about this – now, just like then, my first instinct is to side against the parents – they do not know the future any more than I do…however, if there was even a chance that in 10–20 years, there would be a breakthrough in cerebral palsy treatment that would allow this person (who’s been stunted because her parents want an easier life) to live in a fashion that simply can not be predicted by medicine of our time…I understand that her parents are in a difficult situation and I can not say, of course, what I’d do (though I’m pretty sure I wouldn’t do what they did)...yet I am against turning kids into ‘pillow angels’ (I’m with @pdworkin on this one…the religious overtones make it even worse)...and I can’t quite understand why it was so necessary to remove all of organs that would make her sexually mature…there is no reason to cut off her breasts…and the period? it’s not ‘suffering’...it’s NORMAL, for f’s sake…her parents have made a LOT of assumptions…probably based on their own very limited experience of life…and now we will never know what Ashley’s life may have been like…even if you present to me all patients that are now living as adults with cerebral palsy, I will still say ‘she could have been different…what if?’...

@Arisztid You and many other regulars already know how strongly I favour accessible health care for all and especially for the disabled and their families.

A family with such a disabled child like this girl should never have been so desperate for help to resort to their “Ashley Procedure”

The more I hear about this family, the more their motives are suspect.

The girl deserved and still deserves better.

@pdworkin, I don’t know what “parents’ website” you had in mind, but I read the CNN article that @Arisztid left in the Q, and I still agree with the parents’ decision.

If a child with this kind of mental development (lack of) grows through normal physical maturity, then what happens when she reaches sexual maturity, too? I am sick to death of all the criticism leveled at people who do things like this which includes statements (such as made in the CNN article: “Growth retardation is not a substitute for adequate home aides and home assistance.”

Fine. Wonderful. I don’t live in an ivory tower, though. Where the hell is the “adequate home aides and home assistance” for the line of people who would like that?

Welcome to the real world, where real people have to deal with real problems, without the benefit of ivory-tower ethicists—who offer nothing but a “tut-tut, you ought not do that.”

@Simone_De_Beauvoir I cannot think of any logical reason for removing the child’s breasts.

The only reason I could see for stopping sexual maturity would be if normal hormonal flux would harm the child which I cannot imagine how this would be an issue.

@CyanoticWasp As someone who has worked in the health care profession since 1982, I can attest personally to the fact that if the family were provided with funds for proper supportive nursing care, their daughter, fully grown, would have been quite easily and well managed at home. The family would have to have been vigilant in watching the staff but it is quite doable.

It could be respite care, say a 4 hour shift every day to three days a week (for such things as bathing the child or the parents being able to take a break), or it could be a live in nurse or the day broken into 12 or 8 hour shifts… round the clock care with staff trained to do exactly this. I have done it so I know it works. I also know it only works if the patient has money or excellent insurance.

Sadly, this happened in America… land of “oh my God, what if I lose my healthcare, what am I going to do??” The family losing their insurance could land their daughter in a State run facility. I have worked briefly in those too. Trust me… that is a fate worse than death.

Pillow Angel? The expression alone is thoroughly sickening, makes me want to throw up.

Baseball bat is much more effective than doing it medically. Cave man discovered that ones upon a time. It is lucky that he had wild animals to kill instead.
Now a days baseball bat is still effective in taking good care of people who have done such things. Stoning them works as well.

Now to answer your Link. It might have been the best thing for that particular individual. We still don’t know why she was born so bad off. I suspect that so great a disability could have been detected much sooner and a better solution could have been found. In this case it not only caused the death tof a good doctor I also made every body else’s life more difficult. Also there is the problem of what happens when the parents no longer can take care of the kid.
I leave this with a question. Can they detect such a condition in the first trimester of a pregnancy? If they can this whoe think could have happened due to medical and parental negligence.

I’ll tell you what makes me so angry about this (and by the way, Google Ashley’s Page and you will find the parents’ excuses for their crimes) is that I have had a friend for the past 25+ years who is severely disabled from CP. He is a complete quadriplegic and has only the use of his neck muscles, so that he can turn and nod his head. This enables him to use a headband with a laser device that moves a cursor on a computer. He has a straw in his mouth. Different combinations of sips and puffs activate different technologies so he can steer his chair, open specially made doors, etc.

I met John when he was five. He is now over 30. I watched him mainstream himself through school in Santa Monica while fighting the school board all the way. He got a standing ovation from his class when he graduated from Santa Monica High School. He then went to art school, and graduated with a BFA in animation. He is an artist. He works full time as an animator. (By the time he was sixteen he was a regular visitor to Disney Studios, where he was given the “Bible” of Disney animated characters that every Disney animator works from)

Explain to me why it would have been OK to desex him, stunt his growth, halt the development of his secondary sexual characteristics. I will publicly kiss the ass of anyone who can explain why that should have been done to my friend.

Oh, by the way, he can and does enjoy orgasms.

I think it must have been a horribly difficult decision. I understand both sides of the argument, but never having been in that situation, I don’t know what I’d choose to do. My gut reaction is to think that this extreme modification was not the right thing to do. And, God knows, the term “pillow angel” only makes everything worse. It seems to turn a child into a pet, or a stuffed toy.

One thought….if the parents were totally selfish they’d just drop her off at an institution. It sounds like they want to take care of the child themselves.

I didn’t read the article…those things twist me up too much. It’s easy for us to arm-chair criticize. I have no other comment.

I have to admit that I am totally confused by this issue. If I had been born slightly more autistic than I was… Who can make the decision? If given the theoretical choice, I would prefer to have been aborted. Who decides? And at what point is a decision not permissible? Who decides that a child will never be able to make a decision on her/his own (never have adult competancy)? If it’s done for ease of care; then when does the option to do this become an obligation to do this? It’s the same slippery slope as with assisted suicide; when does the option to die become an obligation to die?

@stranger_in_a_strange_land This child, at 10 years old, had the mental development of a 6 month old and, due to whatever is wrong with her, the doctors stated that she would get no better. I have not done enough research to know whether or not this is true of this disorder or what criteria the doctors used to decide this.

I know that CP does not necessitate brain damage but do not know anything of static encephalopathy.

I know that the term “pillow angel” raises my hackles.

@syz I would like to hope that I would be in a sufficient financial position, if it was me, to provide the kind of nursing care I described in my last post. Since I have to work I could not be the one to provide the care 24/7. That would be my hope.

@walterallenhaxton I do not know enough about the condition to know if this was detectable in utero.

If it was, then the whole abortion issue comes into play and we all know how much of a mess that one is.

“Pillow Angel” – sickening

I can kind of understand the sterilization. What if this child or another in her situation were not supervised and got pregnant? Or the boy with fetal alcohol syndrome who is violent with the mind of a 5 year old, but will have the hormones of a grown man, gets a girl pregnant (or even rapes her, god forbid) will the parents have to pay child support?

The rest of this greatly disturbs me because I would hate to see us become desensitized to this practice. What if people who just like the baby stage or toddler stage want to keep their children small? Will their brains still develop? Can you imagine having a fully matured mind with the body of an infant?? The potential abuse of this procedure is horrifying.

No takers? Where are all the defenders of the procedures?

As someone who is raising a violent ADD, ODD, Bipolar son who is now taller than I, I can certainly see how parents might wish a difficult child would remain small so the parents can handle the child physically more easily. However, it seems to me that it is heaping insult upon injury. The child was born with problems, and all of this surgery and medication can only cause more pain and problems for the child.

Such children are very often underestimated by many people. My aunt was told to send her first-born son to a “home” because he wasn’t going to live long. If he had been sent to a home he probably would have died young. Instead he is now in his fifties and, while, far from normal, he has a job (in a Big Building making Boxes), can purchase his own lunch (Burgers) and can get around on public transportation (the Bus). He really likes the letter B

I cannot defend whatever procedures the parents inflicted on their daughter. None of it was for her benefit, but only for theirs.

@Val123, I think you’ve made the best comment here so far, and the only one worth a damn: “It’s easy for us to arm-chair criticize.”

I’m sick and tired of everyone weighing in to say how awful the parents must have been… without having been there. (And none of the comments about “my friend is this…”, “my sister was that…” have any relevance whatsoever. You weren’t there, were you?)

@Arisztid, as to why they didn’t want their daughter’s breasts to grow, I would think that would be obvious. Surely in your experience you’ve at least heard of “face and body of a woman, mind of a child”. As awful as this all seems… those parents live in the real world, and fortunately for most of us it’s a place we don’t have to go to. (And as for the commentary about “if they had this or that”—including income, help, alternate caregivers, etc. etc.—it would be manageable, it sure must be lovely to speculate on all of the things that someone else ought to have to manage just perfectly.)

I can’t criticize a single thing they’ve done, whether I would have done the same or not. I’m sick and tired of all the self-righteousness evidenced here tonight.

—@CyanoticWasp, it is a discussion board…the question asked for comments. Giving an opinion is not the same as being self-righteous.
opinion…1. a belief or judgment that rests on grounds insufficient to produce complete certainty.
2. a personal view, attitude, or appraisal.
http://dictionary.reference.com/browse/opinion
self-righteousness-confident of one’s own righteousness, esp. when smugly moralistic and intolerant of the opinions and behavior of others.—

@CyanoticWasp Whether or not she had had these surgeries, the child would be bedbound with the thoughts and actions of a 6 month old. If she wound up in the wrong hands, the “body of a woman” comes into play. As she is now, she is a pedophile’s dream..

Unfortunately, often care like I described is not manageable. It does not matter what is right and what is wrong. Only the facts matter. Unless you have bloody good health insurance, you are screwed and the patient will wind up in an institution. What insurance the family has determines what kind of institution. If it is no insurance, the child would wind up in a State institution.

@CyanoticWasp Your answer is the only one that can really be called self-righteous. You contributed nothing thoughtful or discriminating to the discussion. If we removed your post, no one would miss it. At least everyone else has been willing to address the issues. You won’t even think about them.

I guess….I skimmed the article. Where did the risk of pedophilia come in? Was it mentioned in the article, or was this a Fluther-take.

Regardless, I grew up near a mentally retarded boy-turning-into-a-man. Seven years after we moved to the neighborhood, I and my sisters were flagged to…be careful. He was an eight-year-old when we moved in, 15 when we got the “warning.” I, personally, have concerns with severely mentally retarded kids hitting puberty….especially males, whose muscle mass is growing accordingly….having the same hormonal urges as the rest of mainstream kids…..but with really no idea how to handle those urges other than as they come…...

@Val123 The threat of pedophilia is conjecture. This child is kept in a permanent state of the kind of youth that would appeal to that sort. She is, I would guess, going to outlive her parents. I am hoping that proper care has been arranged for her.

This was just conjecture about a potential problem with this sort of thing.

I have heard of the same things, Val, and my wife’s nephew is in a similar situation. He is quite the handful.

My niece’s stepson does not have this issue in any way,shape, or form – regarding girls. He has reached puberty, and as such, gets erections and, like a child, wants to ‘play’ with himself, because it feels good. He has no interest in girls. If a male with the mind of a young child ‘rapes’ a girl/woman, I have to question who put the idea into his head. Show me the average 5-year-old that would think of doing it. I’m betting you can’t.

I looked at the mother’s blog. I’m sorry, but they did not do it to keep from having to put her in an institution. They make that crystal clear. They did it for her ‘comfort,’ exclusively.

This is what raises the most flags for me… in neon orange with red flashing lights: They say that once they knew the procedure was possible, they did not hesitate in moving forward as fast as they possibly could. Yet they were told at her age of 5 months to put a stomach tube in for feeding, as it took 8 hours of constant feeding to get enough nutrition into her for a day. They not only did not ‘move forward as fast as possible,’ but they delayed until she was 5 years old. At that time they finally gave in, because when she was sick with a cold, she would refuse a bottle, and end up in the emergency room, severely dehydrated. But this had to be done ASAP for her comfort? I doubt it.

@pdworkin, you were up on your soapbox straight away to compare the parents to Goebbels and Streicher.

‘nuff said.

I was comparing the process of dehumanization in this case to dehumanization in that case. I didn’t mention the parents being anything like Goebbels and Streicher. I said that the propaganda had to come before the surgeries. Go read it again. You misunderstood.

I stand, err sit, corrected about my wife’s nephew. @Keysha is my wife.

@pdworkin, you wrote “They dehumanized their daughter” (with a snide side remark), and in the next sentence you asked “does this remind you of anyone?” and brought up Goebbels and Streicher.

Perhaps you misunderstood your own post. It doesn’t particularly surprise me.

I don’t intend to squabble with you. It doesn’t enhance anyone’s understanding of the issues, and it hijacks the thread. If you need to continue to insult me you are welcome to send me private messages.

I love how one person can derail topics like this. not I wish certain people on this site could grow up just a little.

I’ll have to peruse all of this later, but apparently, she grew to be 5’ 4’’.

From a mere perspective of practicality, that doesn’t really help much.

For the purpose of some invasive treatments, that might have some other quite negative effects, they took off a few 10’s of kg of mass. It kind of reminds me of that scene in Phantom of the Opera: “Welcome to Singsing. We will remove your teeth: they are very unhygenic” or something like that).

Further, what if she was successfully, or even partially successfully treated? Now we have a healthy, or near healthy, girl/woman with a stunted body.

@Civic_Cat The thing is is, even if these extreme measures are valid with this one patient, this is going to set a dangerous precedent.

I do not know enough of the history of this one patient to know if she has had any negative effects from this procedure and the question of whether or not she has negative effects from it is not going to be answered until she has lived out her life.