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    Originally posted by Lindox
    Can you ask Ashley if that's what she wants?
    And therein lies the crux of this entire thread
    C5/6 incomplete

    "I assume you all have guns and crack....."

    Comment


      Originally posted by Lindox
      Leif,
      What will be bettered by putting the parents in jail?
      Can you ask Ashley if that's what she wants?
      Wouldn't it be better to be open to these parents and try to influence other parents that are thinking about using these methods?

      If I was given the choice of having my uterus removed or losing my Dad as a child I would have said take the damn uterus.

      Even a three month old baby knows their mothers voice and touch.

      Wouldn't it be better to try and find alternatives for others..there is nothing you can do to put back Ashleys uterus. You can influence the parents about using the hormone therapy..but then you better have love involved in that influence or it won't make a damn bit of difference for anyone.

      I agree..what they chose to do was beyond extreme.
      But taking away the only parents Ashley knows is being pretty extreme also.
      Hello Lindox,

      As for your first question, anything would be better for this kid, especially to put those parents sooooo far out of distance from this kid as possible, because they have nothing to do with her, as they have proven. She is a human being, and those folks are too lazy.

      Read my post in this thread how a wife handled her husband for instance. Those lazy parents should have seen that TV clip. The wife in that clip was superwoman, not afraid of crypton at all. I’m not saying any should be a superwoman or superman, but give me a break.

      Open to those parents you say; man, how to be open to crazy ppl like this? That’s the same as to be open to potential bank robber and a cop killer etc. even before they do the harm. The answer is it is difficult, but society has to put up some rules upfront. This goes for both in this example.

      Lindox, how many cries here (inside and real) about the removal of this kid’s uterus etc.? None, I didn’t? Did you? Or for that matter any here in this thread? See how this is going, some has to put the foot down. I will and have no problems with it what so ever.

      As for your last paragraph. I sincerely mean that a mutilated or obsessed kid should not live with the ones doing that and those doing that to a kid should have a hard fist planted in their face. Get real.

      Comment


        Leif,
        I could agree with you if the parents had done the surgeries themselves, but they did not. They got advice from doctors who said it was OK. I think the advice given was bad and if proven that the doctors did not follow laws we do have to protect children - they should be punished. And if they did follow all the laws - then our laws are not good enough and have to be changed.

        Good people can make very bad decisions. I think Ashley's parents truly believe what they did was best for Ashley. They found people who agreed with them. If instead they had found people who disagreed and gave them another, better choice I am sure they would have taken it. One family cannot know all of the options available to them, but a hospital and a 44 person ethics board certainly should.
        Susan
        Ashley is a little girl worth knowing about:http://www.ashleyx.info

        Comment


          Originally posted by PDnemesis
          Wise: So, let me ask a question that everybody seems to be avoiding. Is it true that people like Ashley have arrested brain development?

          First, it seems obvious to me by the way the parents describe Ashley and their interactions with her that she does not have the mind of a three month old.

          I have a 23 year old son with Down syndrome and fetal alcohol effect that tests to have the mind of a three year old. He cannot remember more than two things in sequence, he cannot do the simplest memory game, he can not correctly identify which is different when 3 like and 1 unlike items are presented to him. He cannot read, count, or think abstractly. This is how he tested when he was 6 years old. IQ 43. Nothing has changed.

          Except he cooks 50% of the meals in our household without assistance, does all his own laundry, provides care for 2 rabbits, gets himself up for school (in Michigan special ed kids go to school until 26) and off completely on his own, has his own business selling t-shirts, avidly watched the Superbowl, and is already campaigning for Hillary Clinton. None of these things was he capable of or interested in when he was 6 and yet the testing of his brain is unchanged. IQ: 43.

          A few things that have changed recently are that this past summer were he started to use clauses in his sentences, he seemed to be able to read a few words, and he began to show anger when negative consequences were presented to him. This demonstrates intellectual growth. So I asked that he be tested this year even though it was not required for school. Same as usual - no change. Same IQ since age 6.

          So is this evidence of arrested brain development or do we have to think of intelligence differently?

          Would Ashley always test as a three month old? Would that mean that she always experienced her world as a three month old?

          How many untethered lives are we going to sacrifice in the name of the "Ashley Treatment"?

          Susan
          Susan,

          Not having been a parent with a mentally retarded child, I can't speak from personal experience. However, I can speak as a neuroscientist and can categorically state that statements such as "arrested brain development from the time of birth", that the hormonal treatment will have no effect on Ashley's status, and that she will forever have the mental age of a 3-month old are unscientific and irresponsible.

          I disagree with Leif and other discussants who believe that the parents or doctors should be punished. I don't think that Ashley has been "mutilated". I believe that the intentions of both the doctors and parents were well-meaning. What is done has been done. The goal of the discussion is not to punish the doctors or parents. It is to discuss the issues so that better decisions are made in the future.

          I respect you for what you have done for your child. As lindox pointed out, it is an act of love. And, you are correct in pointing out that many kids who have emotional difficulties are much more difficult to take care of than Ashley. An IQ is an artificial measure that does not necessarily reflect many aspects of intelligence, competence, or value as a human being. Put in its starkest terms, in Ashley's case, a low IQ test score has been used to deprive a child of sexuality, reproductive choice, and ability to grow.

          Please understand that I don't want to imply that one should never intervene medically or surgically in a child. The decisions can be much more difficult. For example, if Ashley has emotional difficulties, including obsessive-compulsive behavior, would it be acceptable to do a frontal lobotomy? What should be done about the children with Lesch-Nyhan syndrome (autodestructive behavior) and Lennox-Gastaut syndrome (multiple drug-resistant seizures per day). The decisions are heart-breaking.

          The decisions made concerning Ashley are unusual because they are relatively extreme solutions for perceived problems based on unsubstantiated assumptions concerning the benefit of such therapies and the prospect of Ashley's future development. Despite the experimental nature of the treatments, the procedures were not reviewed by an IRB. The public statements of the head of the ethical board suggest both bias and ignorance concerning mental retardation. The system failed to protect Ashley.

          Wise.

          Comment


            Susan,
            No, to me this seems like they would have taken her to a ’stan country to have this done regardless the cost. This was bad parental judgements as for being in charge of a kid. Btw. Is mommy working, is dad taking decisions etc. Who decided all this? Mum or the lazy Dad butt?

            Comment


              Leif,
              This surgery was done in their own community - obviousy they didn't have to look too far to find doctors willing to do this. To me the question is would this had happened if they had lived elsewhere? Did they just "luck' out to have a hospital willing to do this - or would any teaching hospital have been convinced? Was it the parents whose argument was compelling or doctors who saw a means to get noteriety through experimental medical research? Why didn't the ethics committee say - No way!? The parents could have been dissuaded from doing this innumerable times alog the way, but were they?

              Is what happened to Ashley indicative of what our society would do to any little girl like Ashley or an aberration?

              Susan
              Ashley is a little girl worth knowing about:http://www.ashleyx.info

              Comment


                Originally posted by Wise Young
                I disagree with Leif and other discussants who believe that the parents or doctors should be punished. I don't think that Ashley has been "mutilated". I believe that the intentions of both the doctors and parents were well-meaning. What is done has been done. The goal of the discussion is not to punish the doctors or parents. It is to discuss the issues so that better decisions are made in the future.
                Wise - to take away body parts inside or out for some is not good, if doc’s think that is Ok I will be sceptical for the next anaesthesia I will have say when the cure comes around wondering how I will wake up. This will be my choice though; did the kid here have those, if any? Please don’t start sympathizing with the parents and doc’s here. They took of body parts inside/out for no reason. Maybe for a discussion at best.

                Comment


                  Originally posted by PDnemesis
                  Is what happened to Ashley indicative of what our society would do to any little girl like Ashley or an aberration?

                  Susan
                  This is not an abortion, get real.

                  Comment


                    Leif,

                    IF the doctors considered this a unique situation, never to be repeated that would put it in a somewhat different light (still unacceptable to me) than if as they did open this up as a means other parents could address the issues of care in their children.

                    I do not believe that anticipation of Ashley possibly having breast cancer, uterine cancer, painful menstruation, or anything else warrants what was done to her, but these doctors seemed to believe it did.

                    Now a waiting list for simialr treatment exists. Will they do it again? That is what most concerns me.

                    Ashley is loved. Her parents may have been misguided, but what is done is done. They cannot do it again. What is accomplished by punishing the parents? Several children, not just Ashley would have to go into care. How canthat possibly be good for the children?

                    The focus must be on the future. Never again.
                    Susan
                    Ashley is a little girl worth knowing about:http://www.ashleyx.info

                    Comment


                      Originally posted by Leif
                      Wise - to take away body parts inside or out for some is not good, if doc’s think that is Ok I will be sceptical for the next anaesthesia I will have say when the cure comes around wondering how I will wake up. This will be my choice though; did the kid here have those, if any? Please don’t start sympathizing with the parents and doc’s here. They took of body parts inside/out for no reason. Maybe for a discussion at best.
                      Leif,

                      There are circumstances where body parts should be removed and parents have to make the decision for children. As you know, I don't believe that the parents and the doctors made the right decision and the normal safeguards to protect the child were not sufficient. But, this does not mean that the parents or the doctors should be punished. That would be counterproductive and I suggest that you don't know enough of the situation to reach the conclusion that the parents are unfit parents.

                      Wise.

                      Comment


                        Good medical info on Ashley's treatment

                        http://article.nationalreview.com/?q...FiNDRjZTFkMjM=


                        An Ethically Unsound “Therapy”
                        Emotions and motives to the side, this radical procedure is unjustifiable.

                        By Wesley J. Smith

                        Doctors at Seattle Children’s Hospital admitted that they surgically
                        removed a six-year-old girl’s healthy uterus, breast buds, and appendix,
                        and then subjected her to two years of high-dose estrogen injections to
                        keep her from reaching adult stature. And they did so at her parents’
                        request. Sounds like a clear case of child abuse, doesn’t it?

                        Not so fast. Many are justifying these actions because the girl in question
                        was profoundly disabled with a neurological disease that left her with the
                        mental and physical capacities of an infant. Moreover, they point out,
                        her parents were motivated by the loving desire to keep her “small” so
                        she could always be cared for at home. The question thus becomes:
                        Do these motivating factors transform a seemingly clear case of child
                        abuse into acceptable acts of loving care?

                        These are the intensely controversial questions that we face in the case
                        of “Ashley X,” an anonymous disabled girl from Seattle whose parents
                        and doctors are promoting “Ashley’s Treatment” — described above —
                        as a medical method of enabling profoundly disabled children to remain
                        in the care of their parents when they become adults. Accordingly,
                        Drs. Daniel F. Gunther and Douglas S. Diekema asserted last October
                        in the Archives of Pediatric and Adolescent Medicine that there was a
                        “compelling case” for acceding to “a parent’s desire to seek growth
                        attenuation” for a profoundly cognitively disabled, non ambulatory child.

                        Meanwhile, Ashley’s parents, , established a blog to proselytize for the
                        medical transformation of other profoundly disabled children into what
                        they call “pillow angels.” They write in their blog: “We call her our
                        ‘Pillow Angel’ since she is so sweet and stays right where we place
                        her — usually on a pillow.”

                        This very disturbing case raises two fundamental questions. First, did
                        these medical interventions support Ashley’s intrinsic worth as a human
                        being? Second, did her disability and the parents’ loving motive transform
                        what would normally be deemed terrible abuse into legitimate therapeutic
                        procedures that were ethical for the doctors to perform?

                        The answer to both questions, I think, is no. To understand why, we need
                        to move past the emotionalism generated by Ashley’s circumstances and
                        sympathy for the parents’ motives, and deconstruct what was done to
                        her and why.

                        Let’s start with the least excusable action that was taken: The parents
                        reported in their blog that Ashley’s breast buds were removed to free
                        her from “the discomfort associated with large and fully-developed
                        breasts.” This surgery seems ethically invalid and utterly superfluous.
                        It did nothing to promote ease of Ashley’s future care. Nor could the
                        parents and doctors have known whether breasts would one day cause
                        Ashley any discomfort. And even if they did, there would be other non-
                        or less invasive methods of dealing with the issue. Perhaps this is
                        why — and I found this omission quite striking — Drs. Gunther and
                        Diekema fail to mention that they subjected Ashley to mastectomy
                        in their journal paper.

                        Which brings us to the hysterectomy/appendectomy issue: Ashley’s
                        healthy uterus was removed to prevent her from ever menstruating and,
                        apparently, as a prophylactic against uterine or cervical cancer.
                        So the question is whether avoiding the “mess” of menstruation —
                        the cancer worry seems like so much window dressing — justified
                        removing her healthy uterus (and appendix).

                        Hysterectomies, while certainly common, are not without potentially
                        serious risks. It is abdominal surgery, requiring full anesthesia,
                        intubation, and the need for pain control. The potential side effects
                        include injury caused by the anesthesia, infection, and perhaps even
                        death. Add in the fact that menses is not an illness and, indeed, that
                        it can be controlled in profoundly disabled women with periodic
                        injections, the cutting out of a healthy organ seems wholly unwarranted.
                        (Some have suggested that the point was to prevent pregnancy in the
                        event of rape. But if preventing pregnancy was the point, there are
                        many less intrusive methods of accomplishing that goal.)

                        Keeping Ashley small via hyper-injections of estrogen seems, on the
                        surface, the most justifiable action taken in Ashley’s case. After all,
                        it is undeniable that a 75-pound helpless girl — Ashley’s current weight
                        at age 9 — is far easier to care for than an adult-sized woman of, say,
                        125 pounds. Indeed, there is no denying that keeping Ashley “small”
                        could be the difference between her remaining at home and one day
                        having to be admitted into a care facility.

                        On the other hand, according to Drs. Gunther and Diekema, using
                        high-dose estrogen injections as a method of keeping a child from
                        becoming normal-sized is utterly untested and unproven. (Estrogen
                        injections have only been previously applied to keep girls from growing
                        abnormally tall — itself an ethically dubious “treatment.”) Thus, the
                        physicians write that they “can only speculate” about how much
                        Ashley’s growth will be attenuated. (They estimate that starting
                        estrogen in a 5-year-old boy would result in his being two feet shorter
                        and 100 pounds lighter as an adult than otherwise would have been
                        the case.) They also admit that the potential beneficial and deleterious
                        health effects are “difficult” to assess “because we have no direct
                        experience with high-dose estrogen treatment in young children.”
                        This raises the worry that Ashley was used as the subject of
                        unethical human experimentation, a concern heightened by the
                        doctors’ acknowledgment that Ashley’s Treatment “is a novel,
                        untested, medical intervention.”

                        Does Motive Make a Difference?

                        Even if what the parents and doctors did was wrong, some assert that
                        their beneficent motives somehow make it right. Let us concede that
                        the parents — to their great credit — love Ashley deeply and want only
                        to be able to keep her snuggled in the bosom of her family. And let us
                        also stipulate that the doctors had the best interests of Ashley
                        foremost in mind when deciding on the procedure — a decision which
                        was made in consultation with the Seattle Children’s Hospital Ethics
                        Committee and others — firmly believing that their interventions would
                        improve the quality of her life.

                        But what we do matters more than why we do it. To illustrate the point,
                        consider this somewhat crude and inexact analogy (which I don’t
                        intend as a cruelty): Parents in some cultures subject their daughters
                        to female circumcision motivated solely by love in the firm belief that the
                        procedure is the only way to guarantee their daughter a future husband
                        and the security of marriage. Despite their virtuous motivation, most
                        of us still justifiably consider the practice to be inexcusable genital mutilation.

                        Or consider this: If Ashley had been older and the only way to keep
                        her sufficiently diminutive to be a “pillow angel” was to amputate her
                        legs, would that justify such surgery? And what if parents and doctors
                        decided that keeping a profoundly disabled boy sexually immature
                        would add to the quality of his life and ease of care: Would these good
                        desires justify his castration? And what about the other end of life?
                        People with Alzheimer’s tend to wander, making it extremely difficult
                        to care for such patients at home. Would cutting their nerves so they
                        couldn’t walk thus become acceptable?

                        Taken in whole and in part, Ashley’s treatment seems unethical,
                        unwarranted, and excessive. The high-dose estrogen treatment is
                        untested in children Ashley’s age, with potential adverse effects
                        consequently unknown. Removing her mammary glands seems
                        utterly unjustified. The hysterectomy risked her life without providing
                        a therapeutic benefit otherwise not generally obtainable. Thus, it is
                        hard to argue with the California-based Disability Rights Education
                        and Defense Fund press release that decried Ashley’s Treatment
                        as violating the “non-negotiable” principle “that personal and physical
                        autonomy of all people with disabilities be regarded as sacrosanct.”

                        What to do? This matter is too important to be left to parents and local
                        ethics committees. As the disability rights group Not Dead Yet pointed
                        out in calling for a halt to any further applications of Ashley’s Treatment,
                        “Ethics committees are not a substitute for the constitutionally-
                        guaranteed right of due process. In fact, they often act as an end-run
                        around those protections.” At the very least, the entire matter should be
                        independently investigated by a professional task force, a government
                        agency, or both. The purpose would not be to punish Ashley’s parents
                        or doctors, but rather, to ensure that no other disabled child is subjected
                        to non-therapeutic surgical and hormonal interventions to “improve the
                        quality of their life” until the matter has been fully evaluated as to ethical
                        propriety, safety, and efficacy.

                        Beyond Ashley’s case itself, we should also act positively to better
                        help loving and big hearted families care for their disabled children
                        into adulthood. For at the heart of this controversy is the abiding
                        problem that people like Ashley’s parents often struggle alone.
                        As the bioethicist Art Caplan aptly put it: “The problems Ashley and
                        her parents face are terribly real. But permanently freezing a person
                        into childhood is not the solution. Families like Ashley’s need more
                        help, more resources, more breaks from the relentless pressure of
                        providing care and some hope that their daughter can be somewhere
                        safe and caring after they are gone.”

                        — Wesley J. Smith, a frequent contributor to NRO, is a senior fellow
                        at the Discovery Institute and a special consultant to the Center for
                        Bioethics and Culture. His website is www.wesleyjsmith.com.
                        Ashley is a little girl worth knowing about:http://www.ashleyx.info

                        Comment


                          Thus, it is
                          hard to argue with the California-based Disability Rights Education
                          and Defense Fund press release that decried Ashley’s Treatment
                          as violating the “non-negotiable” principle “that personal and physical
                          autonomy of all people with disabilities be regarded as sacrosanct.”
                          Except when they're retarded then all bets are off.

                          Thanks for this article PD. Reflects the arguments against this that myself and others have made. Funny that he used similar analogies too, genital mutilation and amputating the limbs of disabled people in general to make them easier to care for. Actually, judging from the responses of the AB media, I bet most people wouldn't be opposed to the latter. I wonder if he reads CC.

                          Comment


                            No, but he and I are in communication and he has read the statement of solidarity. He is very well-known in the field of disability advocacy and has spoken out on Terri Schiavo, Haile Pouchatte (sp.), and Tracy Latimer. He has a very interesting blog
                            Ashley is a little girl worth knowing about:http://www.ashleyx.info

                            Comment


                              The line between surgical mutilation in the name of "treatment" of Ashley and euthanasia is now uncomfortably close. Who's to say doctors and parents will decide it's more humane to "euthanize" such a person in the very near future?

                              The Ashley "Treatment"t is mutilation. What condition was treated in Ashley for the benefit of Ashley? To keep her small, tiny, childlike is not a benefit to anyone, but her parents. It was for the parents' comfort, physically and emotionally.

                              Should she continue to live beyond medical expectation, should somehow outlive her parents, she potentially faces life in an institution. The surgeries and drugs will not prevent her from being raped and/or otherwise abused in such an instance.

                              Punitive measures for the parents solve nothing at this point. As has been said, what was done is done. However, what was done is inhumane, is wrong.

                              This sad history must never repeat itself.

                              Comment


                                Originally posted by PDnemesis
                                Good medical info on Ashley's treatment

                                http://article.nationalreview.com/?q...FiNDRjZTFkMjM=
                                wrong again - it is an opinion piece opposed to "Ashley's treatment" not a "good" source of the medical information regarding her case. Still trying to enflame the troops? This case is so emotionally charged I don't understand why you fan the flames by claiming opinions are facts. You do not advocate, you screech opinions that may or may not have anything to do with the issue.

                                Comment

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