Ethics debate over US girl "frozen in time".

Taxidermy

She was my neighbor's daughter who was born a short time before I was. Her parents were young modern and educated, mine were none of these things. Robin's parents could not understand why I was progressing so fast and their daughter just laid there. When they found out why, they were heart broken. They took care of her as long as possible, which meant that they moved when she was small to a house better suited for her needs.

The girls maternal grandparents moved into the house next door, so we were kept aware of how Robin was doing. The whole family loved the girl, and she made visits to her grandparents house every so often. They would strap her into her wheel chair and neighbor girls would push her around as she twisted and wailed in the chair. She never progressed past that early baby stage, and when she got too big for her parents to continue caring for her, she was put into a care facility. I kind of remember it being the state mental hospital, about the only thing available back then, but I could be wrong. I do remember her grandmother crying about Robin having to be put away in a place like this, and I'm sure Robin's parents felt the same. Robin lived to be in her twenties, I believe. I still remember the pair of her white satin leather high topped shoes that was handed down to me when I was about four or five.

as I am just learning about it now. It's a strange story, and it makes me sad. My initial reaction is that, if the doctors believe it's okay, then I shouldn't be concerned about what they are doing to her. But, then I think that there are doctors who perform C sections at 8 months, followed by lipo, on pregnant women. So, they aren't always ethical.

I have absolutely NO PROBLEM with their decision to keep her alive, but this course of treatment designed to retard her natural physical growth is just sick.

up, change her diapers, feed her....and protect her from perverts when she reaches adolescence and can get pregnant. Walk a mile in their shoes before you condemn.

they're often related.

I respect their right to keep her alive.

But this bizarre altering of her natural physiology for the sake of convenience is just unethical.

There are some lines that shouldn't be crossed.

You mean you already made up your mind after reading one story on the subject?

i dont believe in forced transgendering either.

i dont really care one way or the other on this debate...but a transgenderd individual can make their own decisions. this person couldnt. big difference

altering someone to look like a child forever and keeping them alive for selfish reasons of keeping the child.

Guess they don't want her if she grows up.

Walk a mile in their shoes.

When medical ethicists disagree, I think we should leave these decisions to families.

And considering that this child will always have the awareness of a 3 month old infant, I think the family made a reasonable decision.

"But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."

proposing. They are creating a condition called Primary Amenorrhea, with side effects that include Low Bone Density (which means they'll break easily), Osteoporosis, and Heart Problems. They should be discussing this with SEVERAL Reproductive Endocrinologists, because they are limiting her life span rather substantially with this treatment. (For example, the Osteo will be hitting in her mid twenties, the bone density will probably begin causing breakages by her early thirties, and her heart will most likely give out around her forties.)

The female body requires both estrogen and progesterone as part of its development cycle; puberty sucks, but women who DON'T get it in a "Primary" situation (thus keeping the body of a child) are at substantial health risks, and die young -- even with fully functioning brains. (The condition affects one in a million women.)

But I suppose that's why there's "a passionate argument in disability circles and beyond." :shrug: I suppose they'll save on tampons. What would they do if it were their son?

by the patient, thus unethical.

I guess a good question is, is she happy?

I don't think the girl's interests are what is really motivating these "parents".

Miracles or deception?: the pathetic case of Audrey Santo

As we near the next millennium, the media have been pointing to "millennial madness" as the source for a wide range of divine claims. Yet the faithful have been seeking miracles and finding them - they believe - in unlikely forms and places for years. These include apparitions of the Virgin Mary (for example in the Bosnian village of Medjugorje, beginning in 1981), bleeding statues and crucifixes (e.g., in Quebec in 1985), and miraculously appearing images, such as the portrait of Mary seen in a splotch on a tree in Los Angeles in 1992 (Nickell 1993; 1997). Now there are reported healings and other "miraculous" phenomena attending a comatose teenage girl in Worcester, Massachusetts.

Pilgrims currently stream to the home of Audrey Santo who has been bedridden since 1987, when, at the age of three, a near-drowning left her in an unresponsive condition. Visitors to the home chapel, converted from a garage, report healings after being shown statues that drip oil and communion wafers that bear smears of blood.

Skeptics may not be guilty of excessive doubt when they wonder how and why a tragic figure who cannot heal herself is able to heal others. The Catholic Church is often skeptical of such extra-canonical phenomena as well. It has distanced itself from Medjugorje (where six children supposedly conversed with the Virgin Mary), and the local bishop proclaimed the Medjugorje affair a fraud.
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Interestingly, a year after Audrey's accident, her mother, Linda Santo, spent $8,000 to take her to Medjugorje in hopes of a miracle. As even a sympathetic priest admitted: "On a rational level, this was an extremely absurd idea. It was absurd. It should not have been done. It was medically wrong. And I think from all kinds of angles, sane people would say it was even spiritually wrong" (Sherr 1998). Expecting her daughter to be cured, Linda Santo bought her sandals so she could walk. But as it happened, instead of being helped, Audrey suffered a sudden cardiac arrest. She was revived but had to be returned home by air ambulance at a cost of $25,000 - a bill her grandmother mortgaged her home to pay. Linda Santo's response to the near-fatal incident was to blame it on the proximity of a Yugoslavian abortion clinic (Harrison 1998; Sherr 1998).

More:
http://www.findarticles.com/p/articles/mi_m2843/is_5_23/ai_55683965/pg_1

possibly decades of painful menstrual periods, and more difficulty for any caretakers down the line, when she will always be limited to the brain functioning of a three month old infant?

Explain how nature has failed this fellow human.

certainty that she is. And they know that her development stopped at the level of approximately 3 months of age.

She can cry, smile, and laugh; and, like a baby, she can be bored. But she can't tell where it hurts, or understand people who speak to her.

She can't turn herself over or change her own position. Do you think when she gets too big for her parents to care for her that she'd be better off in a nursing home where the aides turn her over every two hours?

Or could she be better off staying smaller, so her parents and/or siblings can keep her home as long as possible?

If her physical reality rattles the cage so much?
She's not sufficient as is obviously :sarcasm:
This , to me, is a hella slippery slope IMO.

Her parents say they would still want to care for her if she weighed 300 pounds. But the fact is, they wouldn't be able to be as closely involved in her care if she were much heavier. If she grew to her projected adult size, simply turning her in bed, for example, would involve ropes and joists. But as she is now, either one of them can pick her up and carry her into another room with them, or put her into a double baby stroller.

She cries if she remains for very long in a chair sitting up, and when her breast buds started to develop, she seemed to be uncomfortable with the straps across her chest. (Breast buds can be very tender.) So that was another issue. Also, they were afraid that if her breasts fully developed, it would be harder for her to lie comfortably on her stomach.

But all this is on their blog. Something tells me you'd rather make snap judgments than actually read it.

hormones so they won't end up being short statured? Is that a problem for you too?

-- and NOT a "normal" OBGYN, who only sees this type of issues once a career (if that).

Who can say? What is happiness that it is possible to have it when you can do nothing but lie around immobile, completely unable to do anything for yourself, and have people take care of you for all your life? Is simply knowing that people love and care for you and do for you enough to create "happiness"?

It would be like being a baby all your life, only having a consciousness that grew up while you did not. Imagine having the mind of an adult trapped in the body of a baby, with the skills of a newborn (as in, none). What would that be like?

of an adult. Her mind is like that of a 3 month old infant. As such, she can be bored, she can be comfortable, she can be in pain, she can be hungry. But she can't communicate any of that to her caregivers, except by smiling, laughing, or crying, etc. She can't point to where it hurts or understand what her parents are saying, and she doesn't seem to recognize them either.

She suffered a terrible head injury as a child, and is now 33. She has round the clock nursing care. Her body grew to maturity, her mind did not.

in Day Treatment. She could not sit up, talk, or eat. She was about the same size Ashley will be, except only around 40 lbs. I could pick her up in my arms like a baby. She recently passed away at the age of 52. She outlived both her parents and had no siblings.

It was very sad. She would look deeply into our eyes and the faint traces of a smile would form on her face. We knew she was aware of us and appreciated what we did for her.

How much harder that would have been if she were three times that size.

They want their "baby" to stay that way - just like she "stays right where we place her - usually on a pillow". just :puke:

Is this about HER, or about THEM?

This crosses the lines of responsible and ethical medical care.

If I had such a child, what would I do? I don't think I'd feel particularly power-trippy about it. But I might feel there was something important I was doing by attempting to give my love to my child in such an unselfish way as doing whatever I could to see to it that she suffered as little as possible for however long she was on this earth.

Most of the time, we love with the expectation that we will be rewarded by getting love back. If we have children, we know the love is one-sided at first and whatever our kids feel for us is all selfish at first, but we teach them and we expect they will grow to love us. But when you raise a child knowing that child will never "love" you the way most offspring do--that you will do all the giving and them all the taking, always--it's a very pure form of love, if you honestly expect neither anything back from them nor any special admiration for what you do.

I know what I'd do. And it sure as heck wouldn't be *that*.

We all went through it with the Schiavo ordeal.

I know what I feel. I know what I would do. It may not be what you would do. You might think me heinous. I might think your choice heinous. We are all different people with different ideas of how life should be lived.

holy fucking meeeping miffy on a merry go-round!

that is just plain sickening.

It does seem very bizarre. But before I passed judgment on it I'd want to find out whether it bears any relationship to how easy it is for caregivers to take care of her. I think some people are indeed reading this and thinking her parents are doing it because they want some sort of real-life china doll or "bonsai girl," or because they like the idea that she stays put once placed somewhere. I'd like to think that is not the whole story.

Surgery should be a LAST intervention, and only done when necessary.

The parents' blog lists many medical reasons, including, according to doctors, a lower risk of bed sores (lighter weight patients develop fewer), and better functioning bodily systems in general, because of the increased ability for people to be able to move her around (she can't change her own position). Also, having fully developed breasts would make it more uncomfortable for her to be supported by straps around her chest when she sits up, or when lying down on her stomach. (Large breasts run on both sides of the family). Cramps and painful menstrual cycles were another concern. The girl can experience pain and cry like a baby. But, like a baby, she can't say what hurts or understand why it hurts.

I think you should read the parents' blog (in the post below) before judging their motives.

and the medical ethicists were highly involved.

doesn't find out about this- talk about a religious right dream come true!

...people who never grow up into adults capable of "sinning", i.e. having sex.

was the primary concern on these parents' mind.

Edited to add: The possibility of being raped in some institution by a caregiver? Sadly, yes. It has happened, and horribly, some institutionalized women have become pregnant that way. Then you have a real mess.

only" folks could realistically expect to put a stop to all the fornication that bugs them so much.

I have relatives with a severely handicapped child. Like I said, my first instinct is not to second guess. But honestly, in this case? The level to which they have interjected with non-necessary surgery and the like... it's ethically tough. I don't know what the answer is, but I'd be lying if I didn't say it bugs me a tad.

http://ashleytreatment.spaces.live.com/blog/

They don't sound like Jesus thumpers to me. Just caring parents trying to do their best for a disabled child who can feel pain she will never understand or be able to describe.

My point wasn't that THIS case had anything to do with Jesus thumping.

I said two totally distinct things upthread. Please don't conflate them.

your point wasn't all that clear. It still isn't, at least to me. Sorry.

To elaborate- I have relatives with a severely handicapped child. I am extremely reluctant to second guess the decisions of any parent in that situation. However, you're talking about extreme medical intervention that, well, I mean it's sort of uncharted territory and it would be hard to argue that it's immediately, medically necessary. It's a tough call.

That was point #1.

Now bear with me for a second.

Point #2, which was (sort of) a joke: "I just hope that the Bush Admin. doesn't find out about this- talk about a religious right dream come true!

...people who never grow up into adults capable of "sinning", i.e. having sex."

See, we're spending hundreds of millions of dollars trying to keep kids from screwing before marriage (even when it's quite likely many may not get married until 30 or later) at the behest of the Religious Right. Really, what seems to have their shorts in a wad is all this unauthorized fornicatin' that the rest of the population so stubbornly engages in. My point, facetious as it was, was that jeez, here's a way they could keep everybody childlike and innocent and sexless. (I won't even tie it into the Catholic Church's record on protecting pedophile Priests, as tempting as that may be)

Sort of like welding everyone into chastity belts. Which is what they're already pissing away my tax dollars essentially trying to do, at least with well-funded dogma of dubious effectiveness, as we speak. (and violating the Establishment clause with a lot of thinly veiled proselytizing)

It was a joke, but it was aimed at the Bush administration and the Theocratic nutbars who run the GOP, and not at the folks in the news story. Sheesh. Now I feel like John Kerry.

I hope that clears it up.

Sorry to have been so dense.

Peace.

Without breasts, and with a body that looks more like a child's, there is a reduced chance of rape, and a zero chance of pregnancy due to rape.

The radical surgeries and hormone treatments performed to keep this child from growing and developing normally physically will NOT keep her from being raped. She'll be safe from rape in her parents' care, presumably, but if she has to be institutionalized, rape is certainly a possibility.

If they wanted to ensure that she wouldn't become pregnant if raped, she could have been sterilized with laparoscopic surgery requiring only a tiny incision instead of a hysterectomy, which is major surgery involving a lot of pain.

It doesn't eliminate it, but it reduces it. Limiting her size also increases the likelihood that she could live out her days in her parents care, or possibly one of her siblings, instead of in an institution.

Also, a hysterectomy today no longer has to be major sugery. Are you familiar with vaginal hysterectomies?

Did you read the parents' blog? They go through the medical issues in some detail.

http://ashleytreatment.spaces.live.com/blog/

Seriously. Read my post again, then tell me what I'm saying there. Because for the life of me, I can't figure out how you don't get what my point was.

reading your response.

But my first reaction was that you thought the parents took the action they did in order to control the daughter's budding sexuality, for some puritanical purpose.

situation. It's a REAL tough roe to hoe, no matter how you look at it.

Disregard the big windy explanation upthread. :)

but I know that if I did, I would only have compassion for them. I wouldn't be second-guessing them.

I think these parents are trying to do their best. Their decision might not be what everyone would decide -- it might not even be the "best of all worlds" decision -- but I believe that they and the doctors involved made it in good faith.

It goes into a bit more detail.

http://ashleytreatment.spaces.live.com/blog/

And photos:
http://ashleytreatment.spaces.live.com/photos/

Edit: After reading the blog, no way will I pass judgment on these parents.

Would I hesitate before having surgery done on a child of mine? Absolutely. But it doesn't seem to me as if this surgery was done out of mere "convenience." It sounds as if concern for the girl's quality of life was part of it...it just may not be a decision everyone agrees was best for her quality of life. But that's probably not a thing easily to be determined by one not intimately familiar with the situation.

I might feel less disinclination to judge, for example, were the girl possessed of normal mental faculties, and fully aware of what her parents were having done to her and that it would forever deny her the right to any sort of sexual maturity.

"I might feel less disinclination to judge, for example, were the girl possessed of normal mental faculties, and fully aware of what her parents were having done to her and that it would forever deny her the right to any sort of sexual maturity."

A normal girl being surgically altered to prevent physical and sexual maturity. I'd be very inclined to judge this one.

This would be monstrous and criminal. You didn't mean it this way, did you? I must be taking this the wrong way. I'm genuinely confused here.

So I think you two basically agree. Me, too.

I was being a little sarcastic when I said I'd be "very inclined" versus "less disinclined" to judge parents who would have surgery performed on a normal girl to prevent her from reaching physical and sexual maturity.

How could anybody consider such a bizarre situation and say they'd be "less disinclined" to judge. Or even "very inclined" for that matter. How about, "I can't fucking believe something so hideous would even be contemplated!"

At first I thought this was just a mistake in phrasing, but it seems to make good sense to you. I'm sorry. Maybe I have some kind of dyslexia going on here because I'm just not getting it. Am I somehow reading this wrong? Have I become irrational without realizing it?

This idea would be laughably absurd in a sickly humorous way if it weren't for the fact that, some, I guess, think it may be debatable in some way. Like, it has it's pros and cons. Like, it may take a little thought to figure out what's right and what's wrong with this issue.

Something's gotten mixed up here. You don't really believe doing what's been suggested might be ok in some circumstances, do you? If you respond, please say "no".

BTW, my feelings on this hypothetical have nothing to do with my thoughts on the OP.

Some people have an understated, tentative, non-assertive way of expressing themselves. I think he was making the point that the two cases would be very different. Of course you wouldn't do the procedure on a normal child.

So, as you request, my answer is NO. What MIGHT apply in the case of Ashley definitely would NOT apply in the case of a normal nine year old.

Next day now. You're right that I was over-reacting to his wording. I understand what you're saying about some people being understated in expressing themselves. It's inconceivable that he meant it the way I read it (literally). I guess I was just trying to get him to rephrase his statement for the record, just to make it clear.

I shouldn't cast stones, I've been guilty of phrasing a thought in such a way that people take it the wrong way myself often enough. I probably did it here in this thread. I could have been gentler in pointing out what I thought was a mistake in wording. In fact it may not have been a mistake in wording at all. We can't see facial expressions or hear emphasis when reading a written thought, and that can make all the difference in the world. Someone can say something completely normal, but when we see it in print a lot of the "ambient" context is lost and it can be read as entirely opposite what the speaker meant.

I try to be aware of this, but I'll try harder. Thanks for the helpful response. You could have tried to make me look like an ass and you didn't. I appreciate that very much and I'll remember it. I'll try to do the same in the future.

And I know many think it is weird, but as a healthcare worker I can see what might motivate them.
For one...as someone pointed out....changing her diaper, picking her up, etc. As the parents/caregivers get older, their job won't get harder forcing them to institutionalize her.
Another thing to consider is after they are gone since she will presumeably live a full adult life span, she will survive her parents.
If you have never seen the treatment of mentally ill adults in some facilities...then you may not understand.
The personna of a child may assure better care for her as she ages since most caregivers will relate to her on a childlike and nurturing level.
I can't condemn--I've never walked these shoes and hope I never have to.

And I'd imagine a full grown adult would be much more subject to bedsores, infection, etc. than a child.

Furthermore, I doubt the doctors would even be considering it if there weren't some sort of ethical validity to their side.

that the doctors brought up. Also, being able to move the girl around more easily keeps all her systems working better.

http://ashleytreatment.spaces.live.com/blog/

loving parents.

is bizarre/sick. But, part of me says that the parents may be thinking that no matter how old she gets they will still have to carry her from place to place and bathe her. That may be very difficult if she is 5'6" and 110lbs. The parents are going to continue to age and start suffering from the same afflictions that hit all senior citizens, it may become downright impossible.

Just a very difficult, complicated issue.

I think we're being awfully judgmental, for the most part. I'm awfully thankful I never had to walk in those parents' shoes.

This is creating a toy for the parents. Do no harm. The patient did not request this procedure. Its a cosmetic option only at the request of the parents. This is harm to a patient that did not request the procedure.

This is sickening.

And there were many medical benefits.

As long as the steps taken carry a medical benefit then it makes sense. But there is an element of delusion in operation here as well. It appears that this child will never actually be fully selfaware. It is a tradgedy but it is little more than a pet in human form. The best course of action would be to let nature take its course. But that is an easy descision for outsiders to make. For the parents and the mother in particular such a thing may be nearly impossible.

then Ashley wouldn't be alive. She requires a feeding tube.

Anything done medically means nature isn't taking its course. But how many of us want to live without any medical care? As it is, her parents are using medical care to keep her as comfortable as possible -- since she can feel pain and cry like a baby, but not tell anyone where it hurts, or understand why it hurts.

But there is no quality of life for Ashley. She is a prisoner in her own body. Not even aware of self. Her condition is a tradgedy.

to deal with it.

I believe they are torturing themself in the end. But I understand how and why they are doing what they are.

The fact that a doctor, or forty doctors, or a thousand doctors, sanction something doesn't make it ethical.

far greater depth than you have.

http://ashleytreatment.spaces.live.com/blog/

could be awaiting this girl? Mine finally got better when I had my first baby, but this won't be an option for her.

Why allow her to suffer that pain for no benefit? It's not like she can have consensual sex or a pregnancy -- ever.

like Depro-Provera, that prevent periods. I know several women that use it due to paralysis. So, that shouldn't be a concern in this girl's case.

And there were many other medical concerns. Here's more:

http://ashleytreatment.spaces.live.com/blog/

IMHO that is just wrong.

Did you read the whole thing?

Yes

uncomfortable straps across her chest, and other problems that they're trying to avoid?

They have a child with the brain of a 3 month old, who can feel pain but not point to where it hurts or understand why. All she can do to communicate is smile or laugh or cry. The "details" of caring for a person in that condition are very sad indeed.

What if, sometime in the future, they develop a treatment which would allow her to lead a normal life. What they do to her today would prevent that.

I don't think so; sounds like it would take a miracle.

After nine years, the chance of this girl ever developing normally is practically nil.

For it to undergo the normal development of a person's brain at this stage seems impossible. I suspect your choice of 'mutilate' as a word shows you've made up your mind about this, however, and conversation with you won't change it.

Sometimes euthanasia might be a more humane option.
If they can stunt her and make her as she never was intended to be, can't they ease her suffering and make her as if she never was?
Tough questions.

Oh my.
Oh my fucking God.
You truly aren't serious are you? Talk about ethics (or lack thereof).

Get off the high horse.
They want to use chemicals and hormones to intervene. No pro creative God involved in that decision, just us lowly humans.
I don't profess to know if that's the correct decision.
And here's to the fucking god. :cheers:

People use chemicals and hormones and surgery every single day to alter life. Oh well.
But the day we start executing (not even going to use your "nicey nice politically correct term of "euthanasia") mentally ill people is the day this country slides completely off the slippery slope into the abyss.

Numerous times.
Here's one example.
http://www.innocenceproject.org/case/display_profile.php?id=80
You are not this naive. Are you?

I live in Texas. It has happened here more than once.
Doesn't make it right though. Does it? I sure as hell wouldn't advocate it.

You stated "But the day we start executing (not even going to use your "nicey nice politically correct term of "euthanasia") mentally ill people is the day this country slides completely off the slippery slope into the abyss."
And now you admit the abyss has been breached? I agree in that case.

I equated your use of the word "euthanasia" to "execute".
You are deliberately muddying the water--would be curious to know why.
We were talking about someone like Ashley. A mentally retarded person who is not incarcerated nor has she committed any crimes. To euthanize her is to execute her.

To make her easier to handle?
Easier to cope with?
Less obtrusive?
Easier to feed?
What?
If she is as she should be, who is anyone to interfere in the name of whatever????
I'm saying I think she has a right to be as she is.
If not, then where do we stop?

Because she is smaller, she can be moved around more easily. She'll have fewer bedsores, bladder infections, lung infections. And she'll be physically more comfortable.

Why should anyone interfere with anyone's health? If we all are who we should be, why should anyone have medical care at all? Maybe we should all be Christian Scientists. Is that what you're saying? If not, then what are you saying? That you know better than this girl's parents and the 40 doctors that carefully examined her case, and have access to far more information than you do?

Your choice of words are very poor.

Ethical, I've found, seems to be in the eye of the beholder. What I think is ethical, you may think is intolerable. What you think is ethical, I may think is evil.

When you have a person that has the cognitive ability of a 3-month old, they can broadly be classified as being mentally ill because they cannot perform age-appropriate functions.

is the correct term.

Mentally disabled. Mentally challenged. Developmentally delayed.

But *not* "mentally ill.

comfortable and engaged with people.

http://ashleytreatment.spaces.live.com/blog/

wants to be more comfortable.
As is their right I suppose.
We are all voyeurs on this incident which will affect very few of us.
Modern life I suppose.

some people accept the unacceptable.

http://ashleytreatment.spaces.live.com/blog/

They wrote this in an attempt to help other parents in their situation.

I acknowledge that I , myself, can only speak for my children to a very limited extent.
Reducing their footprint on this planet ain't part of it in my opinion.

They're trying to help keep her at home, closely involved with people who love her -- and out of an institution -- as long as possible. They want her to be small enough (75 pounds or so) that they can bring her with them to as many places as possible, rather than for her to be stuck in a bed somewhere by herself. I don't condemn them for that. I think they're brave and caring.

and never will
it isn't really about her, is it?

comfortable, and as involved as possible in the family's life -- and out of an institution. Did you read the parents' blog?

On the one hand, it seems unnecessary and dangerous. However, who can really say that without knowing the family? Someone in my cousin's church has a small baby born without a brain (only a brain stem). How can I judge what they need to do to ensure the comfort and care of their child?

Too many people are quick to judge other people on the basis of very few facts. In case you're interested, here's the parents blog:

http://ashleytreatment.spaces.live.com/blog/

The parents have taken steps to freeze her in childhood. Why not? She has the mental capacity of an infant. What use to her was her uterus, or fully developed breasts?

I thought about it, the more I could understand the parents' point of view. What benefit would there be to this girl/baby to eventually having a woman's body?

And wouldn't any theoretical benefit be outweighed by the benefits of being able to stay home, cared for by her relatives, and out of an institution as long as possible?

Which is a bit ironic because she already is in the form of a human. But the aspect they are projecting is her humanity. Her brain is so damaged that she is unaware of self. The fact that she is not making eye contact suggests that she has not yet or is incapable of developing a sense of identity. There is no one there to feel discomfort except for the parents. There is merely a collection of autonomic responses.

I would have to study her mental state a bit more but from the few clues given it just simply seems there is no person there. The comfort they seem to be striving to improve is their own. And that is where the unease of others comes into play on this. The reference to her being a pillow angel dismisses her entire identity and seems to reduce her to a doll for the parents. At least this is how it seems to some.

Just because it looks like a person does not mean it is a person. But our brains have difficulty with this in reality. If it looks like a person then we immediately presume it is a person. Unfortunately we do not have enough information being presented to us to be able to make a proper conclusion. If the child has an active sense of self and that self can benefit from these procedures then they are fine. But if there is no self present then they are little more than an estetic modifaction of a human body that has no mind.

As the child of 2 alcoholics. That said, my infants rarely make prolonged eye contact in my experience, and I tried. It doesn't mean that that no one was home, just that they were incapable of the I Love You Gaze that adults want. I always thought the "sense of self" started developing at about 5 months old. This child is always going to be 3 months old. She has awareness. She's just been stopped at 3 months. Is it your opinion that a 3 month old infant is just a collection of autonomic responses? I'm not slamming you, I really want to know. If what you say is true then you have refuted all the wingnuts arguments about abortion.

We don't really have enough information to make a fully informed descision. But as brain damage has been acknowledged and it has been pointed out that eye contact has not been made on any regular basis it does present as possible that she has no sense of self.

In a normal developmental state an infant will spend much of its early development seperating self from the universe around it. The lack of eye contact alone would not be indicitive of a lack of self. Autism and Aspergers result in a notable lack of eye contact. But this does reinforce the issue as much of the problem in these cases has to do with identity and projecting it to others.

But coupled with the static encephalic diagnosis it would seem that her development is frozen before she was able to develop her sense of self. This is mere conjecture based on the limited information provided.

we are limited to informed opinion? Thank you Az. Sometimes I jump too fast to judgment.

objecting to her parents making any decision they felt was necessary.

improve her physical comfort -- i.e, reduce pain. You don't have to have a sense of your own separate identity in order to feel pain. Are you seriously suggesting that? That animals and small babies don't feel pain? Tell that to my dog when his ear is bothering him.

And three month old babies like to be held. That's a lot easier to do with someone this size as opposed to adult size.

The article indicates to me they wish to stunt her growth to prevent bed sores. A small stunted body with no breasts weighs less in bed, so there is less chance of painful bed sores. The issue is whether this is being done for the right reasons or the wrong reasons. In a world colored by shades of gray, sometimes it is very difficult to make a decision one way or another. In these cases, I almost envy those who view the world in black and white, but as I said, "almost" as their solution tends to come out worse than the problem itself.

discomfort, as much as they can.

"Large breasts are uncomfortable lying down with a bra and even less comfortable without a bra. Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts."

(Breast buds can hurt! They certainly can when you lie on your stomach, and I'm sure that straps across them must be uncomfortable, too.)

"We hope that by now it is clear that the “Ashley Treatment” is about improving Ashley’s quality of life and not about convenience to her caregivers. Ashley’s biggest challenge is discomfort and boredom and the “Ashley Treatment” goes straight to the heart of this challenge. It is common for Ashley to be uncomfortable or to be bored. Even though Ashley’s level of tolerance has increased along the years, she is helpless when bothered and her only recourse is to cry until someone comes to her rescue. These episodes are triggered by something as simple as sliding off the pillow or a hair landing on her face and tickling/bothering her, let alone menstrual cramps, adult-level bed sores, and discomfort caused by large breasts. Also, without the treatment, Ashley could not be moved as frequently or be as included in family life, and we would not experience the joy of being an intact family as often.

http://ashleytreatment.spaces.live.com/blog/

It's not something I see everyday, nor do I wish to see, but now that it is in front of me, I note there appears to be a lot of conflict within the medical community over this. I, myself--I have to admit--am generally leaning towards less intervention than these parents have decided, but then again, I am also admitting this position as an outsider, not a family member. I couldn't tell how I'd decide if I were in their shoes because I'm not.

I honestly do not know what I would do if I were in their shoes.

Just as I never knew what I would have done if I were faced with a amniocentesis result that showed I had a Downs syndrome baby. I would like to think I would have kept it . . . but I just don't know. I never had to travel down that path.

I only have compassion for people like Ashley's parents. They're doing their best to turn a parent's nightmare into the best life they can for all of them.

If a doctor treats a patient in a way that improves the patients life, do the motivations of others matter?

As they age, I'm sure that the parents would prefer to care for a person of adolescent size as opposed to a full-size person. The fact that this is convenient for the parents does not reduce the fact that it also benefits the patient.

is simply too vague. There is no such thing as a diagnosis of someone being stunted at a 3 month old developmental stage. That is simply too specific. They are basing that solely on when the problems were noted. We do not know what if anything she is experiencing. If she is experiencing anything then I agree with you. But in the event that she has no mind due to the brain damage then she is not feeling anything.

I am trying to advise caution in jumping to a conclusion here. This is often the case in where an emotionally powerful situation is in play. Few things touch our emotions as a child in trouble. We do not know the full extent of her condition other than what is provided by this limited article and the blog of her parents who are going to naturally be the most emotionally biased observers.

We do not even know if she registers pain at a conscious level. Or if she even is conscious. And that is the critical issue.

So what? What would be the harm to an unconscious being to have these procedures?

I'd rather err on the side of the parents.

But then the question becomes one of what is the right thing to do. Is it right to keep the parents in a twilight of deluded hope? I don't know the right answer on this side. I see too many sides on it. Is their love healthy or is it obsession? Erring on the side of the parents could simply result in a slide into an increasing neurosis and disconnect from reality. Or it could be the right thing to do. I meant it when I said this situation is a tradgedy. The parents are in as much of a prison as Ashley is. Even if their hearts are full of love. I weep for them. Is letting go of Ashley the way to freedom? Or is it the abandonment of a human being?

The people I'm uncomfortable with are the ones who think this is an easy issue. If any issue in medical ethics is black and white, it's not this one. That's why I wouldn't second guess the parents. Who else is in a better position to decide? Certainly not any of us on a message board.

They are naturally going to be blinded by their love for what they want their child to be. Hope is often a two edged sword. And that is the problem in this case. The problem with hope is that it lifts us up but if its a false hope it precipitates a fall. This is not to say that all hope is false. But a parent of an ailing child can do nothing but hope. Sometimes the merciful one is the person that dashes hope before it destroys everything. Again we here on a political message board are certainly not the ones to make such a call.

on a committee that deals with ethical issues every day. I trust their judgment on this.

I am just full of caveates aren't I?

And yes, it's seems apparent from the parents' blog Ashely experiences pain and is conscious.

btw--she has a mind, too

Quite an extreme, but interesting 'treatment' for the most difficult aspect of caring for a severely disabled adult--size and weight.

That effects all aspects of their quality of life, believe it or not.

Caring for a 6'5", 250 lb. man who can not sit up or do anything for himself versus a 5', 115 lb. woman in the same condition is like night and day.

DemBones and pnwmom know of what they speak, as do I.

Keeping this person at home, out of an institution, with their family, involved in as much of a typical life as possible, is key.

This family felt this was the last resort in maintaining her life this way.

For a young woman who has severe disabilities, life in an institution is a death/rape sentence.

Because, it seemed to me that the primary reasons for doing this are to make it easier on her caregivers.

After reading her parents blog, I'm very sympathetic.

But all in all, the real, underlying issue in all of this is one of control.

And I just happen to think that's a Very Bad Thing for humans in general.

Hopefully this doesn't happen very often.

I have to admit, my first reaction was, "That's nuts!" but having read the article and the whole of the parents' webpage, I can see their point. I'm still not entirely comfortable with it on some level, but on the other hand, this child would not be alive were it not for the use of medical technology. I think the real question is, will keeping her small improve HER quality of life, and it sounds like the answer may very well be yes.

This is an issue that feels to me the same way that abortion questions do. I am very thankful I never had to face that decision myself; and I wouldn't presume to make that decision for another woman.

And I wouldn't make this decision for Ashley's parents. I think they were doing their best, and a panel of 40 doctors considered the issue and gave their go-ahead.

She is now 18 and bigger than her mom. Both her older siblings have moved out leaving mom and dad to care for her when she is not in school or in a special day care so they can work.

They love their daughter, but their lives are often hell. I don't know how they do it. I can't judge this family because I've personally seen my neighbors struggle with the physical size of their daughter, not to mention the diapers, periods, etc.

I don't know what I would do, but this family in the OP seems to love their child and maybe this is the right thing to do?

I have friends whos 21 year old daughter has severe MD. She can't walk, talk, crawl, roll over in bed or feed herself. Her only means of communication is her emotional state.

After medical consultation, they decided on a hysterectomy for her. Their motives are beyond reproach. No more periods improves her quality of life, and giving birth could be life-threatening.

The parents need to be talking to a Reproductive Endocrinologist (or possibly several). I've posted more details in several other replies, and don't want to keep beating the same theme. Low Bone Density, Osteoporosis, and Heart Problems -- these are NOT good options.

She's a human being, not a pet.

A potted plant. Or "pllow angel". I'm sorry, this story just creeps me out.

They are inducing Primary Amenorrhea (spelling?) which currently affects one in a million women in this country. This means that she will FOREVER have the body of a child -- which might not sound "bad" for the caretakers, but has real live medical side effects, including, but not limited to Bone Density and Heart Problems. That means her bones will break easily (want to talk about pain?), as well as early onset osteoporosis (think "mid twenties") and she will most likely die from a heart attack at a young age (even if she doesn't have any complications from the surgeries they are proposing, like adhesions or infections).

Someone needs to give these parents a whack upside the head -- preferably a good Reproductive Endocrinologist!!!

:mad:

and painful, where is the quality of life?

There are always considerations to weigh...difficult decisions to make...unique considerations that blur the lines...

well documented, and heart problems kill. There is a medical reason why puberty inducing hormones course through the human body at a set time; when they don't, the side effects are BAD, and long term life threatening. While "never having a period" *sounds* like a good plan, human physiology is not set up that way ON PURPOSE because these things are SUPPOSED TO HAPPEN for long term health benefits.

If the fully mature patient develops conditions such that ONE out of four weeks is "bad" (or even TWO), then there are treatments to address those issues. Three out of four "bad" weeks is extremely unusual, except in the cases of another condition like polycystic ovaries. More common is some discomfort during ovulation (two or three days max), and then perhaps a couple of days of controllable discomfort during the first part of the menstrual cycle. The patient in this case could also be put on a mild form of birth control that would limit the length of the cycle, etc. via either a birth control protocol administered via patches or arm injectables which can work for years at a time with no side effect. Or, once physical maturity has been established and the "health" benefits of puberty kick in, then a hysterectomy with hormone replacement therapy regime could be performed. (Yes, I am more familiar with female gynecological effects/problems than I would like to be!)

One of the issues the family is attempting to address is that with the mental development of a three month old, the patient CANNOT communicate "where it hurts" -- want to talk about how the pain of multiple fractures is going to go over? How about the quality of life when the osteo stuff kicks in? Broken hips? Etc.?

As I have stated several times in this thread, the parents need to be discussing this stuff with a specialist in the field called a "Reproductive Endocrinologist." Frankly, they need to be discussing it with several because the condition they are attempting to INDUCE is a rare one affecting approximately one in a million women. I am familiar with a case where an OBGYN didn't know what he was dealing with, and casually prescribed birth control before actually diagnosing the problem. Since birth control pills contain the hormones that would be used in treating the condition, if the patient hadn't insisted on finding the CAUSE of the problem, the initial symptoms and the long term problems caused by the situation would have been completely obscured.

This condition is rare, but documented, and the fact the parents are calling it "Ashley's Treatment" because they've never heard of it is definitely a cause for concern.

I don't have the stomach for making that kind of decision or dealing with such a tragic situation. If I were the girl's father I would have long since run away from it all.

No one has ANY idea what life is like for that little girl. Her parents are undoubtedly the best source of insight into what constitutes the most comfortable circumstances for their daughter's existence. They live with her. They care for her. They love her. It's incredibly presumptuous to suggest that the parents have taken the drastic actions they have, in order to "convenience" themselves.

Until we have lived in a body as disabled as that child's, existed with a mind as stunted as hers, or spent hours, days, months, and years tending to our own child's every physical and emotional issue under such circumstances, we have NO. right. to judge people who are making a very difficult choice for their child.

I'm sure glad no one has stepped into the intimate circumstances of my child's medical care and criticized the decisions I've made. This thread is disgusting.

side effects of the decision they are proposing. Primary Amenorrhea (which is what they are proposing) has SERIOUS side effects on the people it affects -- Low Bone Density (which means they'll break very easily) by her mid twenties, Osteoporosis by her thirties, and Heart Problems by her forties. The parents need to be talking to a specialist called a "Reproductive Endocrinologist" because a "normal" OBGYN sees cases like this Very Rarely (since Primary Amenorrhea only affects about one in a million women).

They are making a proposal to, in essence, significantly lower her life span, and possible cripple her with broken/weak bones. I will agree that their situation is an awful one, but the type of decision they are making here is NOT necessarily the best one. It might "look good on paper" but that isn't going to make it a SMART decision because the "long term" consequences are VERY DANGEROUS. Estrogen and progesterone are VERY IMPORTANT hormones for the female system, and the lack of them in a "primary" situation is NOT good.

"I'm sure glad no one has stepped into the intimate circumstances of my child's medical care and criticized the decisions I've made. This thread is disgusting."

You're right about the intimacy. What's disgusting is the holier-than-thou judgemental comments and the dehumanization of this young woman and her parents.

This thread reveals a lot about people.

You are a person who deserves respect.

Alas, you're wrong about no one on this board not having any idea about what that family's life is like.

I'm too emotionally close to this situation to comment much more on this. I learned my lesson on this board during the Schiavo murder.

stall.

The more I read the sicker I felt. Let her die.

my own little girl is prancing about the house and shouting out the spellings of her spelling words. She is only a year younger than Ashley.

I will not judge and have no right to judge this family, they love their daughter and have done what they feel is right for her.

In many ways, they have done so much more than most of us would probably ever have done.

They have cared for her at home, have not institutionalized her and they apparently will continue to do so as long as they live. Where many would have given up on Ashley, these parents are planning for her future...no matter how limited it may be.

My response, x-posted from my blog.

I made a New Year's Resolution to journal at least once a week, so I'm trying to start out on the right foot (wheel?) by taking up this bit of controversy in the news: The Ashley Treatment.

Ashley is a 9-year-old girl with severe disabilities. She has the mind of an infant and cannot walk, talk, or feed herself. Her parents made the decision to keep her in a child's body forever by using hormones and surgical procedures. They insist that it was done to protect her quality of life, not for their own convenience as some have alleged. However, I believe that the truth is more complex, and in some ways, more disturbing, than either of those excuses.

The media has been emphasizing the stunting of her physical size, which I consider to be the most justifiable portion of what was done to Ashley. Having gained about 50 pounds over the past two years, I can attest to the fact that weight makes life with a disability more difficult. It is harder for me to care for myself, and harder for me to get back in shape and regain the abilities I have lost. Moving my body is tiring and at times, painful. I am more prone to various health problems since my weight gain, and can see how that would be magnified exponentially in a completely immobile person. It is also more difficult for others to assist me - and as a person with full mental abilities, I feel bad about that.

It does seem that reducing Ashley's adult height/weight offers benefits for her, that it may keep her healthier and more comfortable. As such, simply limiting her size may not be unethical - if doing so has no negative health consequences. However, they seem to be inducing a condition known as primary amenorrhea, which leads to osteoporosis and other serious health problems. Due to her immobility, Ashley would already be at high risk for osteoporosis, so she is in real danger now. In time, her bones may become so fragile that just moving her could lead to fractures. She would then be extremely limited and unable to participate in the activities for which they kept her small, as well as suffering pain whenever a fracture occurred. Still, their reasoning behind this portion of the treatment seems more solid than the rest.

However, based on what I have read, I believe that the primary goal of her parents was not to keep her small, but to keep her physically a child in all respects. You see, Ashley's parents didn't just use estrogen to halt her bone growth, they also had her undergo a hysterectomy and removal of her breast bud tissue, which means she will never develop breasts. They completely desexualized their daughter and transformed her into an eternal child. They have justifications for this that supposedly benefit Ashley, but they fall apart quickly when one examines the non-surgical alternatives.

They believe that having a period would have been uncomfortable and difficult for Ashley, which makes sense, but they could have put her on Depo-Provera or continuous birth control pills. Neither of those are perfect, and carry some risks, but they are an alternative to removing body parts. The breast bud removal was supposedly done because large breasts run in the family, and her breasts would have been generally uncomfortable and "in the way" of her wheelchair chest strap. Also, breast cancer runs in the family. I find these reasons ludicrous - they could have strapped her into the wheelchair some other way, and done breast reduction surgery IF and only if she had discomfort from her breasts. And regarding breast cancer, well, I guess my parents should have done the same to me given the fate of my mother, grandmother, AND great-grandmother. Few people are as high-risk as I am, but I have chosen to keep my breasts, and be monitored carefully. They could easily have made the same choice for Ashley.

Ashley's parents also seem to have an extreme fear that their daughter will be sexually abused, and get pregnant. It is true that an alarming percentage of disabled people, especially mentally disabled and/or institutionalized women, are the victims of abuse, so their fears are not unfounded. However, their "solution" to this problem is an ineffective one. They believe that not having breasts will make her a less appealing target, but they forget that a pedophile would actually be more attracted to her as a result of their choices. They also fail to recognize that rape is about power, not sex. A severely mentally disabled woman is a helpless victim, whom an abuser will be attracted to because he or she can feel power over her. Whether that woman has breasts makes no difference at all.

To remove a woman's sexual organs because she might be sexually assaulted is the worst possible form of "blaming the victim." The solution is not to render severely disabled people sterile and sexless, it is to stop the abuse. Hiring quality, well-paid caregivers, placing cameras in group homes and institutions, accountability on the part of management, and severe sentences for offenders are just a few ideas that would make a difference. No child or woman should be mutilated because of what someone else MIGHT do.

No, keeping Ashley small, liftable, and bedsore-free is not what this is about. Ashley's parents seem to have a distorted perception of her reality - they refer to her as a "pillow angel", as if she were a pet or a doll. They actually say that they are disturbed by the idea of a "child's mind" having an adult body. They want their daughter to remain forever a child, and in doing so, they are denying her reality. Ashley is a 9-year-old child right now, but one day she will be an adult. A severely, profoundly brain-damaged adult, yes, but still an adult. Society doesn't like to see people with disabilities as adults. We're not as cute, or pity-inducing, and there's that pesky idea that we might have rights - even the most severely impaired of us, the ones who can't express what they want and need. In those cases, someone else has to decide what is in their best interest, but that person should be someone who sees them as a whole, adult human being. It should not be the parent who copes with their grief by seeing their daughter as a cute little pillow angel.

Doing these surgeries forever deprived Ashley of any form of sexuality or womanhood. It is true that she could never have consented to sex or pregnancy, but she might have engaged in self-stimulation. She would not have had an understanding of this beyond that it felt good, but it was still taken from her. She will never have the feeling of being in a woman's body, of having soft breasts and curves and an instinct to love and care. These things are primal; they do not require intelligence or awareness to experience on a basic level. Again, this is something many people would rather not think about. I have read many forum postings from parents who are upset about their mentally disabled teen or adult's "inappropriate" sexual behavior. But most of the time, what they are disturbed by is that their son or daughter HAS sexuality, not just that it is being expressed in a public or problematic setting. In this case, the parents seem completely unable to deal with the idea of their daughter being a woman one day. And thanks to the medical establishment, they've now created an illusion to support their delusion.

I know that being the parent of a disabled child can be hell at times. It certainly was for my parents, and I'm highly intelligent and have much more physical ability than Ashley. However, there are resources out there to help. Ashley's parents claim that they cannot find good caregivers for her and that was part of the reason for their decision to keep her small so they can care for her longer. I require an assistant to help me every day, and yes, it is HARD to find and keep a good person. God knows I've had some lazy ones, some jerks and even one who stole and forged my checks. But I've also had some wonderful assistants, including my current weekday person. It can be done, if you screen prospective employees well, treat the person with respect, and pay them a decent wage. Ashley's parents are professionals; while that doesn't make them rich, it should mean that they can supplement state-funded caregiver wages by a few bucks an hour. And even if they HAVE tried every possible caregiver option and service, the solution then is to campaign for more services, NOT has drastic procedures done on your child.

In fact, if anything good comes out of this story getting so much press, I hope it is that the general public learns about the struggles disabled people and our families face. Despite my criticism of Ashley's parents, I do feel compassion for them. They must have felt like they were in a desperate situation to do something like this, although they claim their decision was an "easy" one. The problem is that they decided to change their daughter, when what they really needed to do was demand that the system change, for their daughter and all the other sons and daughters. We need universal health care in this country. We need funding for in-home care so that people with disabilities can live in their homes and with their families instead of in institutions where they are isolated and vulnerable to abuse. We need laws guaranteeing the right of bodily integrity and freedom from unneccessary surgery to ALL people with disabilities, including the profoundly impaired. Then, I hope, parents of children with disabilities will feel free to let their children be who they are, not change them based on fears for their future.