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Mutilation of daughter as disability treatment

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    I originally wrote this:
    I agree with the several posters above. It was an extremely difficult decision to have to make. I have no doubt it caused them a lot of agony. I also have no doubt that the best interest of the child is foremost in their minds. I could not support any harassment of the parents or their doctors for their actions.
    - Richard
    After reading the subsequent posts - some eloquent, some drivel - my opinion has shifted. From the little I know - not having read the technical papers and not personally knowing the child, parents or doctors - I now think that the wrong decision was made in this girl's treatment. Additionally, I would strongly argue that this should never be a standard treatment; however, this is not a change in my thoughts - many medical issues are extremely individual, and I tend to be on the side of allowing considerable (arguably excessive) freedom in their resolution. The standardization of medical treatments can have undesirable results (has anyone here never had to fight the bureaucracy - e.g., think powerchairs?). Nevertheless, I (speaking from the depths of Leif's slammer) stand by my last 4 sentences.
    - Richard

    Comment


      The more I see the consistency of reaction in those injured young, the more I think my reaction as an adult, and a mom, and relatively new sci must be wrong. Shannon's reaction is tipping the scales for me.

      I don't see 3 month olds as autonomous beings. To me they are somebody's baby. That's why they're so much trouble to raise, I guess-they're trying to get past being someone's child.

      God help her family if they made such a terrible mistake. It actually doesn't surprise me so much when the medical establishment bungles.

      I hope I still disgust Scorpion though. It makes me feel special.
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

      Comment


        Originally posted by betheny
        I hope I still disgust Scorpion though. It makes me feel special.
        Yup...

        Comment


          Originally posted by RehabRhino
          Good theory. May be some truth in it. Can I just indulge myself by pointing out that I'm only 2 years post and, as I said, never felt comfortable with it. It's so wrong I cannot believe anyone can sit on the fence about it.

          Didn't take a post from Wise to form my opinion either.


          Rhino, I think for some, it helps to hear from an authority figure they have some respect for and trust, despite a few here much earlier in the thread, having stated many of the very same points listed out by Wise.

          Also, one doesn't necessarily have to have direct or long-term experience to have an understanding of what's going on here and see it in a broader context. I think one's sensibilities can help guide and shape understanding that extends beyond personal experience.

          If people did a more thorough examination of this case, especially from professional medical opinions from all opposing sides and the relevant groups speaking out on the issues, judgments may not have been made in such haste. Even without knowing much regarding the specifics of the case, the overriding moral and ethical questions, and their (social) implications, could still have been discussed.

          I was hoping to discuss these issues, as I questioned and judged some of it in my first post here. It's good to see how the thread is developing - not because people are agreeing or supporting one thing or another, but because now, people are more willing to examine the broader issues/implications.

          Again, it is also important for us, as SCI persons, to look at what values we as SCI disabled individuals (mostly acquired) impose on others living with disabilities.

          Comment


            After having reread this entire thread (and the parents blog and all its attachments for the third time) I guess I too have a little more thinking to do on this issue as well .....

            Its just that I had to believe these parents really really felt they were doing the best/right thing for their child .. its hard for me to accept they agreed to these procedures simply to make their own lives easier without any consideration to long term consequences to Ashley.

            Obieone
            ~ Be the change you wish to see in the world ~ Mahatma Gandi


            " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
            Jane Siberry

            Comment


              I feel ashamed of myself for having the mindset earlier the parents and doctors were within the realm of the acceptable to do what they did. It wasn't, isn't okay.

              When forming opinion about what constitutes acceptable care, I need to think how I'd feel if such "care" were applied to me. I need to remove the emotional/past experience blinders and utilize logic.

              I was wrong in my initial reaction.

              I'm especially stunned about the choices made for Ashley if her life expectancy is so limited. Given expectations for only single digit longevity, why were surgery and hormones even considered?

              Not only that, if she lives for decades, what benefits will she experience from what was done? I see little, if any, for her.

              As for the doctors, the Hippocratic Oath was not followed. What happened to, "First do no harm ..." ???

              As for the parents' worries about sexual abuse of Ashley, I'd say she's already been harmed. However, it wasn't at the hands of strangers. It was by their own through the doctors who performed drastic surgeries, gave medications designed to prevent her body from growing naturally.

              Comment


                I've calmed down and my hands are no longer shaking and I no longer feel like I'm about to throw up. I'm still very upset, but at least the physical stuff has subsided.

                I know stuff like this happens, but I think this story has hit me so hard because it is happening in my own backyard. Also, she's is nine, my daughter is nine, and I was eight when injured.

                When I look back on growing up with a disability, the thing that bothers me the most is that everyone thought they knew what was best for me, and so they made decisions for me. Sometimes they were right, but sometimes they were wrong. So wrong. And those memories are terribly painful, even after all these years have passed. I remember I begged and pleaded for them to not do certain things to me, but they did it anyway. What they did is [I]nothing[I] compared to what they've done, and are doing, to Ashley.

                Poor Ashley can't even protest. Not that anyone would listen to her if she could talk...

                It wasn't until I was about 16 when people started to listen to what I had to say.

                Bastards. I'm still angry about it and probably always will be.

                I think that someday Ashley's parents will realize what they've done to their daughter and they will live with horrible guilt for the rest of their lives.

                Although ... my daughter is not disabled, and I am certain I would never allow them to do these things to her. So, maybe the parents will live their lives guilt-free. But maybe with a normal childhood, I would have made the same decision they have made. Who knows. I don't doubt that her parents love her. It's a sad situation.

                I know I'm not very articulate. I wish I could communicate better what I'm trying to say.

                Maybe I missed something, but why have the parents choosen to make this public? Are they hoping to encourage other parents in similar situations to do the same?

                Comment


                  Originally posted by LaMemChose

                  As for the parents' worries about sexual abuse of Ashley, I'd say she's already been harmed. However, it wasn't at the hands of strangers. It was by their own through the doctors who performed drastic surgeries, gave medications designed to prevent her body from growing naturally.
                  Good point.

                  Comment


                    I dunno, I think there is too much equating the physically disabled with profound mental disability. I myself see no connection to myself to the mentally disabled because I happened to break my back. I believe that congenital physical and mental disabilities are treated differently nowadays also, so I dont see what the outrage is all about. Terry Shaivo anyone?

                    Comment


                      Originally posted by Shannon
                      Maybe I missed something, but why have the parents choosen to make this public? Are they hoping to encourage other parents in similar situations to do the same?
                      I think so Shannon. I wondered the same thing myself as it has been several years since she actually had these things done to her. How did they keep it quiet when they did the surgery? Things always leak out at hospitals no matter who or what is being done.
                      T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                      My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                      Comment


                        They waited to publish their blog until the medical journal was out. It came out in October and so it wasn't widely read until November. It started to get negative feedback from the medical community straight away. As soon as the disability community found out about they too started to blog about it.

                        The blog states as its reason for being: "we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden “Pillow Angels”; second, to address some misconceptions about the treatment and our motives for undertaking it."
                        Ashley is a little girl worth knowing about:http://www.ashleyx.info

                        Comment


                          Ya, know, I stayed away from this as it is way too painful comming fron loosing our own child and myself having everything I have faced(including the lovely "gift" of SCI).
                          What can you say or do? Really nothing, I just know my thoughts on this. Even the Shaivo case hits extremely close to home for me so, I have been avoiding "cases" like this but they are so touching to me, very, very strongly. I will only say, right or wrong, we don't decide that. I fell though it was wrong and there is always more to the story then "we" see/hear/read.
                          I just could not phathom(sp) doing this to my child for ANY reason.
                          This to me is such a devastating case but I am not the one living in it and having to deal with the consequences, right or wrong, good or bad.
                          "I've got to keep breathing. Because tomorrow, the sun will rise. Who knows what the tide could bring?"

                          Comment


                            how totally strange

                            I know one of the doctors named at the top of this thread. I mean, like, I've known him for years, because he's my daughter's doctor. He was and is a blessing to her--knowledgeable about her particular condition, kind and patient, willing to spend whatever time and energy she required.

                            She spent a few hard years trying to be understood by a couple of other doctors--finally somebody recommended him, and every interaction we've ever had with him was positive.

                            I have no opinion about the decision these parents made, but I thought you'd like to know that at least one of the people involved is no monster. He's an old friend and a good doctor.

                            Comment


                              Originally posted by darkeyed_daisy
                              Well given her age...I think India/Bangladesh would be her last choice of places to go. I keep forgeting she is over the age of consent now so I guess I wont have to worry about making a decision like this.

                              I still support Ashleys parents though.

                              I did mention colostomy in a previous in a previous post. What is the difference in removing the uterus, removing bowel for a colostomy, or bladder treatment such as a mitronoff in a mentally disabled child? Many children here have them. The mitronoff was invented to help children (I may be wrong here). They do colostomies and bladder procedures for comfort and to treat accidents. Explain the difference.

                              I already said that I was hesitant to agree that the hormonal treatment was the right choice. I dont think I would have opted for the hormone treatment/breast removal but dont know for sure as I dont know Ashley.
                              India or Bangladesh would be a very good option for the kid as I see it, they have good family ties and anything would do to separate her by a long distance from her parents.

                              To remove the uterus for avoiding future problems like cervical cancer is also silly, any should do it then. Also, now there is a good vaccine (link) for this cancer type which should be given to girls before puberty starts which if she got it would probably made it so that she would never have received such a cancer type. Why did not the parents wait for this vaccine? And what about other potential types of cancer one can get, should organs or body parts be removed or chopped off to avoid this as well?

                              As for colostomy it has noting to do with this, but if some would have given a tip to the parents about it, I’m sure her parents would do this as well.

                              I am very surprised about all this, not the parent’s itself so much tough because there are all kinds of weird parents out there. What I am more surprised about is that I thought that this was not legal; also, does not this hospital have an ethical board or committee? Where were they in all this? I am really surprised by the docs and people involved here. They should have better things to do than surgical mutilation of kids. And to say this is for the kid’s better health is also wrong; I guess to perform those procedures involved she must have had at least three heavy anaesthesias, which alone would put her more in risk of dying than future possible diseases etc. would. Maybe that was the hidden goals by the parents as well, because I don’t trust them. Also, say for the other two kids, take the boy for example, down the road he is in risk of developing testicle cancer like many are, due to this are the parents planning on removing his testicles? Or maybe they already have? I think a child welfare office should take a better look on the parents here.

                              The father in discussion here must also be the biggest wimp here on earth if he can’t lift this little girl as she would still have been without all those procedures from the TV chair to get outside of the house… An example; the other day I watched a documentary about a couple from my neighbour county here at home. The married couple was approximately 35-40 years old I would say. Anyway, the man in the relationship got a serious dementia (a type of Alzheimer) some years ago and rapidly he got into a cognitive situation. He become totally paralyzed and could not communicate at all because his brain was shrinking. Still the woman here did not want to put him in a care place but instead wanted to take care of him herself cause as she said she loved him regardless. This woman was a hard nail I’ll tell you. Not only did she take him outside, and to move him around from bed (their bed), a chair or the wheecahir she just lifted him herself like the most common thing here on earth. Of course he had lost a lot of weight but still he was tall and difficult to handle/lift. She even took him on long haul trips, one trip was to Asia to visit friends recently, and there on the airplane the airplane crew (several of them) was thinking how to get him into the plain and to his seat, the same when leaving the airplanes etc. This woman then said to the airplane crew “get out of my way”, she then just lifted him herself and walked by those airplane crew people like nothing and placed him in a comfortable position. She was amazing, I think this lazy father of this kid in discussion here should go and visit this woman and learn how to take care of the loved ones, I am sure she can teach him a lot of stuff, and here I don’t mean lifting techniques.

                              It is also funny to see that the father here says that God thinks we should give this kid such a good quality of life as possible and also use all means to do so. Well, I’m not sure about this; I think they could have misunderstood God a tad here. I think the father here should leave God out of this and concentrate more on himself.
                              Last edited by Leif; 16 Jan 2007, 12:52 PM.

                              Comment


                                Originally posted by chick
                                You guys are MY amusement, and my amusement alone, until I decide I'm bored. Selfish bugger, ain't I. I usually ignore, but Leif's comments were funny enough for me to post again and Daisy's revelation was truly dumbfounding. The ridiculousness of it all triggered me to have a great laugh. Eh, so sue me...or lock me up with Leif. We might even escape on that submarine to have our latte while watching brown bears mate in that frozen barren land (I now can't remember the name of). If anyone else finds any of us ridiculous, as I'm sure many do, the onus is on them. I do not have the Pied Piper's skillz
                                Glad to help, but my comment was very serious and I meant it. Also glad many here has some common sense after all. As for the submarine trip to the Kamchatka Peninsula, we really have to have that project going, one theme on the trip could be to sentence jail time for some members here, well if the morning grumpiness ain’t to much of a burden that is

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