I remember reading about this case a while back. Basically, the parents of a severely disabled little girl devised, with the help of her doctors, a treatment which would lock her into a childhood state for the rest of her life. This involved a hysterectomy (no periods), removal of her nipple buds (so she wouldn't develop breasts) and growth hormone treatment which would force hardening of bones and joints in the child's body so that the bones would never grow any further. This would lock her at child-sized.

It sounds horrifying (and, tbh, whatever might be said about the level of disability of the child, this is my reaction) but the parents of the child gave their reasons for doing this in two ways:

1. that keeping their daughter as, effectively, a child for her entire life would benefit her in terms of health and quality of life. Not having periods and breasts - something she would never be able to understand - would save her distress. Not getting any bigger would mean she wouldn't face some of the chronic health problems (and attendant pain) attendant on her type of disability.

2. that keeping her small in size would make it easier for people - initially the parents and later, when the parents died, presumably care workers - to care for her physically.

and now there's a new report :

http://www.guardian.co.uk/society/2...e-amid-concerns

which indicates that, following the publicity of the Ashley case, a small number of parents of disabled children are also seeking this type of treatment.

What your opinion on this? For myself, it all sounds a bit Brave New World. My opinion is that making this kind of procedure possible is never a good idea. The type of reasoning given by the parents is the sort of thing in the past that has lead to all sorts of abuses and it also gets a bit close to eugenics.

I've heard about this before. I think another reason given was that it would keep her from being sexually abused since she wouldn't develop? Apparently she started to hit puberty early.

Hmm. On the one hand, it's incredibly creepy and would seem to be an infringement on the children's civil rights. On the other hand, I think there were reasons given for doing this in Ashley's case. Apparently there was a history of breast cancer in the family, They also said it would prevent bed sores. And Ashley is probably never going to mentally develop past an infant level.

That being said, I would generally say no, this is not a good thing. It might be slightly more justifiable in cases were the child is, like Ashley, never going to mentally age much, but I think it opens Pandora's box. If it's okay for Ashley, then we find ourselves saying its okay for kids with less severe disabilities. Its just not a safe road to go down.

i would love to hear about any 100% "safe" road, anywhere, anytime. if you think there actually exists one.

You make a good point. Also, bad wording on my part. What I meant really was that even if there are cases where the use of the Ashley Treatment might be justified (and I'm not sure that there are), it would be difficult to distinguish these cases from ones where the treatment is not justifiable. It's better then, in my own personal opinion, to look for other options when treating developmental disabilities.

They should have just euthanised her. When they removed her ovaries, she practically entered menopause and low estrogen levels is a cause for osteoporosis among other things. According to the report she has scoliosis and the only medicine she's taking is for reflux.

http://www.womens-menopause-health....ogen_levels.htm
http://menopausetreatmentguide.org/estrogen/

Wow this just blows my mind.

My mother spent her entire working live teaching disabled children ranging from down's syndrome, neurologically disabled, spina bifida , hydrocephalus, various types of autism and many others that I am too uneducated to name.

Yes, generally they do sterilize some of those cases at birth, because of and increased sexual drive in some cases and the inability to care for themselves let alone a family.

But my mother started a class that prepared some of those children to eventually go to more normal schools and taught a lot of others skills so that they can actually have jobs or at least cook their own food and do their own washing and generally look after themselves.

There were also a few kids like Ashley (ok, maybe a bit more developed but not much) the point is that every effort was made for these children to develop as much as they possibly can. And often they surprise you and the doctors and their teachers.

I can't say in Ashley's case if it was right or wrong. It was ultimately the decision of her parents.
But for this procedure to spread?
Yeah hello Brave new World.

Last edited by opiumgirl : 15th Mar 2012 at 11:55 PM.

I'm going to veer from my usual safe opinion on this forum and go out on a limb here. This is a terrible, terrible idea. It sounds to me like full-on mutilation. The idea that a severely disabled person could cope with an eternal child state better than natural development is ludicrous. Besides that, and perhaps, more importantly, there are just some things that we, as humans, were not meant to take into our own hands. Deviant actions always have ramifications, and medical science is taking too many gambles.

Is this related to Things Mankind Was Not Meant To Know? By treating a disabled child are we risking raising Great Cthulhu from his briny depths and causing the death of civilization as we know it? Maybe it's more Indiana Jones? Open the Ark and a bunch of Nazis die?

I knew someone would take that line and run with it. Fine, make fun. But my position still stands.

"Treating." You make it sound like penicillin.

Your opinion still stands, but you've still not said in any way what support you have for it. I mean, is it a "gut feeling," "religious epiphany?" How did you become the arbiter of what mankind was supposed to know or not know? What's your methodology in determining that one thing is better or worse than the other? Are Iphones also "things man was not meant to know?" Why not? What constitutes mutilation to you and what's okay, or is any surgical intervention on someone's behalf always mutilation? You're obviously a developmental adolescent physician with a strong background in children with disabilities, why do you think that your professional medical opinion is better than that of the child's physicians? Do you have any literature we could read explaining, in your medical opinion, why this is something we're not meant to know about? Presumably though, since you value your opinion, you are well versed in these things we're not meant to know about. Otherwise we'd clearly have to disregard your evaluation, right? Because if no one knows anything about "what we're meant to know" then obviously it's utter crap to say which is which thing we're supposed to know or supposed not to know.

Do you not agree that there is a delicate balance in nature that medical science is in danger of tipping? The line must be drawn somewhere, but we keep pushing it further and further away. For the record, I never said "meant to know." I said there are things we shouldn't take into our own hands. I say that from the perspective that we can't understand all the ramifications of our actions. If you think we can, then you put way too much faith in humankind.

*Sterilize, amiright?
Nice mix up of words there.

This "fine line we cannot cross" concept has little hope of working since we are never sure where to draw the line. Isn't any medical treatment something "against nature" and against our "evolution" as a species, Darwin style?

No. It's nature. It's not a balancing act. We are not on some trapeze of morality. Morals are mores designed to promote a beneficial, orderly society.


From what? Albuquerque? Where is the source line that we are traveling away from in your position? To move away from something we have to have started from somewhere, right? Are you suggesting that morality was superior in the past? At what time in the past, in what place? What is the exquisite state of perfect ethics of treating children with horrific disabilities that we're moving away from?


Do you think anyone ever knows all of the ramifications of all of their actions? Is that an excuse, a reason for inaction? When you wake up in the morning, do you evaluate the possible consequences of driving to work? Or drinking your morning coffee? You're making an evaluation of the definitive "crossing a line" of behavior that's going on, which you're now presenting as an assessment of future consequences. What are the future consequences? What do you know about the future? Why should we we trust your evaluation of the future? On what basis are you making your medical judgement of the child's treatment?

Even though English is my second language, I speak it well enough not to mix up euthanise with sterilize. They didn't carry on those procedures to make it easier for her, but to make it easier for them to "care" for her, procedures wich will do nothing but help her into an early grave. They probably didn't have the legal means to do that so they found an alternative.

I can understand the argument that it would be much easier to care for her if she remained smaller and didn't have a period, but throw in mutilating her breasts and the whole thing seems way too extreme. It appears to be all about what the parents want instead of what is best for the child.

So the procedures brought her lasting damage?
If they didn't, I'd think it's acceptable - the surgery was a passing pain and she wouldn't benefit from a grown body, while being smaller makes it far easier for her caretakers. There only problem, and a huge one, would be abusing similar procedures with people with different levels of disability.




Oh, I didn't mean it would be an error (if it was one) because of lack of knowledge about the meaning, but rather just a slip. Thanks for clarifying, I think I see your point now.

Normally, I would see this as a violation of a child's right to decide for him/herself. It's a permanent procedure with lasting effects, and any being that has the potential to make decisions should be allowed to do so. However, a child permanently stuck at the intellect of an infant is never going to have the ability to make decisions. There is no ability to wait 'til the child is older to make decisions for him/herself. The child will permanently be in a state of mind in which he/she is unable to make decisions. If the child were intellectually a handful of years older, a case could be made for allowing the child to decide. But infants don't have any rational capacity. In this case, the welfare of the child should be considered by its guardian. If the child's welfare is truly best served by performing this procedure, it should be allowed.

My gut feeling tells me that this sort of procedure is very wrong, but I think my gut feeling is attempting to empathize with a hypothetical rational being capable of understanding the consequences of the procedure. That being will never exist.

I though this post was about some actor batteling alcohol or something . But it was worse .
For me it is a big NO . If she didn't give her ok it make it wrong . If she can't give her ok and they do it , it is very wrong .
Like some said above , it is a permanent thing! you can't go back if it doesn't work !
And add to that , it doesn't come out as 'we cannot watch her suffer with her illness' but it come out as 'this way it will be easier to take care of her ' .

You don't have the strenght to take care of a disabled kid , fine . Not everyone can tackle the task . But this , it encourage peoples to seek (not better treatement) but an easy way to not deal with the issue .

But this is just my opinion .

It's shocking, although some of it actually makes sense. The part about less wear and tear on the body makes sense. I've heard that those with cerebral palsy and muscular dystrophy don't live long (20-30 years) in part due to the stress on their joints. I don't really understand it, but it always makes me very sad when I think of the kids I've known who have that. Moving them around can get difficult as they age. It sounds like they are describing an individual with CP who probably suffered brain damage along with the physical. I can relate what they are saying about her being childlike and not understanding things related to maturing into an adult. On the whole, however, I would distrust the assessment that this is a safe or even wise thing to do. How often has medicine overlooked risks because of assumptions based on limited information? I don't think they know enough to safely arrest someone's development. Further, medical and other professionals will make predictions about people with disabilities that are often conservative and proven later to not be sufficiently true. In other words, it's hard to predict how someone may develop and they may surprise you. Frankly, I don't believe this is in the best interests of the individual.

I read the Guardian article and it seems like the procedure was done for the comfort of the parents. They say it will be easier to care for her if she stays small. Then to further make their case, they say it's to spare Ashley 'discomfort' - that being the development of secondary sex characteristics. Which is slightly weird - as if all adult women are in discomfort, but can deal with it because they aren't disabled. And then they're dosing her with hormones and having painful surgeries performed.
Another disturbing thing is that they invented the name 'pillow angel' for people who stay where you put them. And an ideal pillow angel should be small I'm guessing. Another parent whose child had the procedure says 'our loving God wouldn't want Erica to be in pain.' - again, the 'pain' coming presumably from mature female breasts and menstruation.
I would say no, this isn't ethical. It's in a murky area where someone can say that it's okay to do something to an intellectually disabled person because the disabled person doesn't know the difference.

Last edited by RoseCity : 16th Mar 2012 at 05:32 PM.

Well my initial reaction screamed "no" simply because of the idea of modifying the human body so that it doesn't perform and age naturally? I mean, there must be serious health issues with that. I'm not a doctor, or a biologist, but even still we are a relatively fresh species and our multitude sciences can't be that advanced to perform without glitches.

Why can't they just do what normal people do and take care of the disabled child or put her into care? I'm sure they think it's for health reasons, but when you mess with the body that dramatically there are going to be health issues regardless.

Nevertheless there are disabled offspring in most biological species, just like a shoemaker will occasionally craft a dud pair of shoes. You treat it like an illness, if you can treat it at all you do, if not, you maintain as normal a life as possible. You don't go surgically removing parts of a child's body and injecting shit into her.

Isn't there a specific type of pig which was genetically altered and bred to stay a piglet?
A lot of people who kept the 'piglets' as pets eventually had adult sized pigs to deal with.

It just doesn't seem right to me... I mean my neighbour has an over 30 year old daughter who is disabled but can still function relatively normally despite her lack of intelligence/ communication and need for constant care and supervision.
It just seems like these people are wanting to mess with nature to make their lives easier because they can't bare the effort of raising a child with a disability.

I'm having empathy pain just thinking about what was done to this child. This procedure screams selfish parents and it was flat out wrong someone who was part of this procedure A nurse, doctor or relative should have stepped in and said No! how is it that no one involved called social services? I think it is simply inhumane to do this to a person.

possibly imagine painfully bleeding every month, but never knowing why, or if its even going to end? id call that uncomfortable.
id say the difference between a severely disabled person such as ashley having periods and a non-disabled person such as i having periods is that i know what my period is, why i get it, when to expect it, and what to do about it when it comes for me. and its never comfortable, even given all that...imagine what itd be like to have none of that. ive gotten used to it, but ashley never would.

they also mentioned bed sores being less of a problem with her minimal size.

So they're pretty much not even giving her a chance to even learn to understand.

If you were in an accident and doctors swore you'd never walk again, would you just go ahead and amputate your legs to get rid of the dead weight because doctors (who are often as wrong, as they are right) told you there was no point ever trying to regain use of your legs?
Not saying that people amputate their legs because they can't use them, lol, but in this case the parents of a disabled child have decided for their daughter that she is incapable of ever learning.

Disabled people can and do learn to function in society, they can and do learn to adapt to changes to their body. Sure the menstrual cycle is uncomfortable, even for people who understand them. But it's up to her parents to teach her, not disable her further.

i dont think you get it. ashley is going to remain an infant (mentally) forever...she will not learn to understand it. she doesnt have the capacity. its the nature of her problem; not all disabled people are capable of the same things.