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Thread: Mutilation of daughter as disability treatment

  1. #61
    Quote Originally Posted by chick
    My first sentence is a statement regarding the hypocrisy I see in this thread, not the mere act of making judgment.
    What hypocrisy are you talking about? People expressed their opinions about what these parents have done. You didn't bother quoting anything specific that you disagreed with or that demonstrated what you feel is hypocrisy. Perhaps if you did so, your reasoning would be more clear.

    Where did I claim to be "nonjudgmental"?
    Again, the first sentence of your post appeared to condemn the concept of judging others.

    Please take time to read my follow-up post.
    Oh, please. I read everything you posted. I even quoted from your second post. Shall I assume you didn't take time to read that or that you just ignored the question I asked?

    C.

  2. #62
    I don't think I know what is best for this child. I don't think chick does either.

    I hope her mother and father and her doctors do because they're driving that car.

    I don't see the intrinsic benefit of a uterus for this child. Cramps, periods, the whole miserable setup...we have them for procreation. We don't urinate through our uterus, it seems to be a strictly reproductive organ.

    If a male child were in this condition and his penis were going to bleed, cause him monthly pain and be a hygienic problem for 40 years I wouldn't have a problem with having it removed. In that instance, changing the child will also change the circumstances.

    Ashley WILL have issues if she possesses a uterus, even if she is fortunate, has no cramps and the issues are merely hygienic. Chick, you are only speculating that she will have issues without one. That is YOU placing YOUR values on her uterus. Apparently her parents and doctors weighed the value of that uterus and found it negligible.

    I don't mind her parents making such a judgment call. They are the only people qualified to do so. They are the only ones that CAN judge Ashley's quality of life. We are outsiders, looking in. Ashley IS different than us. She is profoundly mentally disabled. I'm not saying that's worse, or less than us, and I don't know why people are taking it that way. I do maintain that profound mental non-development is different, and it makes her unable to ever live any kind of independent life. There is no chance of Ashley changing her Kotex, or directing a nurse to change it for her. Not with the mental capacity of a 3 month old.

    I don't know what you mean by worthy of potential. If it were up to me Ashley would have all the potential in the world. But I'm not God, and she doesn't. I would like her to "live as much as possible an autonomous independent life." She's not gonna, though.

  3. #63
    Quote Originally Posted by lynnifer
    Still not comfortable with what they have done to this girl.
    Yeah, it just doesn't feel right. I realize that a great many people struggle to find qualified care and caregivers and I'm incredibly lucky to not have to worry about that, but then I go back to the fact that this family was able to find and procure advanced medical care in the form of invasive surgery and extensive hormone therapy. It seems odd.

    I was abhorred to read about removal of the appendix when there was only a 5% chance of it rupturing ... but I read on their site that she would be unable to communicate the pain so I understand the concern.
    There are a million conditions that could crop up that have got to be as likely or more likely than appendicitis. Worrying about that one possibility to the extent that they remove an organ also seems odd to me.

    The website states that the child is 9yrs old but has bones of a 15yr old after the estrogen treatments. Would she not be prone to bone density loss (even moreso now) and pressure sores?
    I wonder what the difference is between a 9 yr old's and a 15 yr old's bones.

    From the parents' website:
    We are currently near the limits of our ability to lift Ashley at 65 pounds.
    How old and feeble are these people?? I weigh 115 lbs and my 65 yr old father can still lift me in and out of a truck. A female friend who weighs maybe 150 lbs or so, was able to carry me up a flight of stairs with no problem.

    Also from the website:
    We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers.
    Impossible? They could find surgeons they trusted to cut their child open and take stuff out, doctors to monitor her long term progress in experimental treatment, but they can't find ANYONE outside the immediate family who can care for a child who doesn't even move from where she is placed?

    Although, I completely agree with removal of her uterus having suffered some horrible menstrual cramps myself.
    But not every woman suffers from cramps. i've never had one in my life and I even have an IUD. So I don't see removal of the uterus as such a slam dunk. And I just have to say that removal of her breast buds at this point is just icky. IF she developed humongous breasts, then they could do a breast reduction, but since she's also on massive doses of hormones, isn't that unlikely anyway?

    How do you tell, for a child who can't communicate, that they're bored?
    And if she can be bored, does that mean she can be entertained? Doesn't that indicate some sort of cognitive function? But there is absolutely, positively, ZERO chance of her ever having the chance to communicate?

    So far, I think these people do love their child and overall are trying to do what is best for her and for their family as a whole. However, I don't think that fact proves that they ARE doing what is best. I still have questions.

    C.

  4. #64
    Massive doses of hormones send a message to her bones that she has reached adulthood and that they can stop growing. So they won't be thicker, stronger adult bones - they will be thinner, shorter child's bones.

  5. #65
    I'm not comfortable with what they've done but I'm not comfortable with a world that condemns innocent children to what appears to be a lifetime of limbo, either.

    Nonetheless, this is the world we got, eh?

    I see why they're not comfortable with outside caregivers. I refused to send my baby to daycare until he was old enough to tell me what went on there. At that age they are so very vulnerable. One lazy caregiver may result in 3 months of dealing with the pressure sore consequences in this case.

    At 3 months you can tell if a baby is bored (but they rarely are). I wonder if Ashley sleeps as much as a 3 month old? Their website says she enjoys being around the family. That's how I remember 3 month olds being. Jake lit up when Justin or I came into the room, it was noticeable.

    Is the appendix next to the uterus? Do you suppose they just pulled it because it was there, and so was the surgeon? Too bad they didn't save it for a mitrofanoff, seems like that would simplify a caregiver's life.

  6. #66
    Quote Originally Posted by betheny
    I don't think I know what is best for this child. I don't think chick does either.

    Ashley WILL have issues if she possesses a uterus, even if she is fortunate, has no cramps and the issues are merely hygienic. Chick, you are only speculating that she will have issues without one. That is YOU placing YOUR values on her uterus. Apparently her parents and doctors weighed the value of that uterus and found it negligible.
    If you were referring to this particular statement:
    Quote Originally Posted by chick
    To talk about a child being unaware and not being conscious of "loss" (enough to morn whatever was taken away), is selfishly imposing one's own idea(l)s onto another and further, not even giving that person an opportunity for potential or experience.
    I never speculated about Ashley's uterus or about what issues may exist with or without one, in this or any portion of my post.

    If I speculated anything, it was related to potential, whatever that be. There is no knowledge or experience of possibility, when denied before ever getting there. It may be worse, it may be better.

    The danger in assuming the former (or even in some assumed pointlessness in giving a chance, especially a priori) as a given, can be seen in the hesitance and at times resistance in Cure efforts, including basic scientific research. We also see it even in the physical rehabilitation efforts for SCI'd persons.

    I made no value judgment about what state of being for Ashley was better or good. There are many inconsistencies, as pointed out by Lynnifer, which raises many questions. However, I question - what makes some disabled persons worthy of potential and hope, and others not? what makes some valued enough to have some (future/potential) cure applicable, yet others less so and preservation not encouraged?

    There is much discussion in these forums about health providers not knowing much about disabilities/disabling conditions, and little understanding and empathy experienced when dealing with them. They are often purported as making decisions that are convenient, less costly and not in the best interest of the one living with the disability, but now, health professionals are best knowing?

    So, decisions are good, best, and right, if not challenged?
    or, if there is no capacity or ability to challenge?

    When a child can not speak out nor voice against treatment and practice, is that treatment and practice good or in their best interest?
    If a child can not challenge authority, is that authority by default in the right?

    Beth, I addressed some of your comments because unlike others directed at me, they are pertinent to some of the questions I am raising and in context. I may be going beyond this particular case, philosophically, but as I mentioned earlier, beliefs about disability can and have historically impacted disability issues and presently continue to do so - in particular the public policies (we as citizen should concern ourselves with) that have implications for both individual and social behavior/treatment .

  7. #67
    Senior Member teesieme's Avatar
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    "There are many inconsistencies, as pointed out by Lynnifer, which raises many questions. However, I question - what makes some disabled persons worthy of potential and hope, and others not? what makes some valued enough to have some (future/potential) cure applicable, yet others less so and preservation not encouraged?"

    agree- wholeheartedly.
    Last edited by teesieme; 01-11-2007 at 11:25 PM.
    "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

  8. #68
    SCI's undergo a fair amount of butchery, and hope for cure be damned. The difference is that we approve our own mutilations.

    I have friends that have had both s/p's and colostomies within a week post-sci. They didn't have time to learn all about the surgeries, possible complications, etc. They just did what their doctors said to do. I don't know any that say they've regretted it but that may be coincidence.

    My only point with that is that Ashley can't approve her mutilations, so her parents do it for her.

    When we talk about potential, what are we speaking of? Physical, mental, what? Whatever it is it definitely seems to be theoretical.

    Again, I note they've stunted her physically, not lobotomized her. I don't think she's going to wake up, sit up and scratch her nose one day. But if she does, what have her parents taken away from her? Height, bone density, uterus, breasts, appendix. I would be so much more horrified if they had stunted her mentally.

    The doctors seem to feel the more likely scenario is that Ashley will never wake up, sit up and scratch her nose. Given that reality, what have her parents taken from her? Was it worth the trade off-the physical changes, butchery, in trade for the chance to live at home and be cared for by her (apparently physically miniscule) family? I don't know why they did it, but if that's what it took to keep her home with loving parents, siblings, grandfolks, it seems an acceptable trade off to me.

    If I were Ashley I'd just want to be with my siblings and my parents, with the people who love me. Not in a home. I just know I would.

    My cousin had a child much like this, she only lived to 12. I never met her. They tell me she was blind and deaf and recognized people by their scent. Everybody wore the same perfume for 12 years. They still all break down when they speak of Rachel. Eventually she got so big she had to live in a home somewhere. My cousin had horrible scoliosis, physically it just asn't possible to keep her home I guess...

  9. #69
    from today's edition of the globe and mail:
    it's wrong to keep disabled girl as an "angel," by andre picard-

    The doctors involved in this butchery should be ashamed of their actions. They have violated one of the fundamental tenets of the ethical practice of medicine: Never do deliberate harm to anyone for anyone else's interest.

    The surgeries and drugs have no direct benefit to the patient, and that makes them inappropriate. The sole purpose of growth attenuation is to keep Ashley portable and cute.
    But in Ashley's case, the parents have corrected what did not need fixing. They have applied an invasive, ethically dubious medical solution to a pervasive social problem.
    Children are not bonsai trees to be pruned and reshaped to suit the limitations or prejudices of their caregivers, or of society in general.
    source
    Last edited by joyt; 01-12-2007 at 11:19 AM.
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  10. #70
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    http://www.cnn.com/2007/HEALTH/01/11...ist/index.html

    Diekema: One of the difficult things about being a physician is sometimes you don't know for sure. We strive to do no harm, but that has to be balanced against what good you might do for a patient. Ashley had a surgical procedure and that involves some pain and risk, but it was our assessment after very careful consideration that the potential benefits would ultimately outweigh the risks.
    CNN: What are the benefits for Ashley?
    Diekema: When you look at the growth attenuation, the primary benefits are by being a smaller girl, it will be easier for people to lift her, and will allow her to receive a more personal level of care from her parents for a longer period of time. They really want to be able to pick up their daughter and give her a hug and put her in a chair. It will be easier for them to move her to the car and go on outings rather than thinking about leaving her behind with a caretaker when they go on vacation. As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation. They don't understand why there is blood coming from that part of their body, and it's impossible to make them understand. Unlike a normal 11- or 12-year-old, you can't explain to them this is a normal part of your development. The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood.
    CNN: Ashley goes to school. She has peers. Is it at all concerning to you that here's a little girl who will never grow?
    Diekema: It would be more concerning to me if she were a little girl who was running around on the playground. I think ultimately being shorter than she would be in comparison to her peers makes less of a difference when she's in a chair and interacting at that level. She will still mature at the same level as her classmates. If you look at her face, it will continue to age appropriately. We haven't attempted to change her outward appearance. What we've done is made her shorter than she ultimately would be
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