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Mutilation of daughter as disability treatment

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    #16
    "Parents don't own children"

    So... could you possibly mean that children are independent?
    So after birth a babe should go to work, get a spiffy apartment and carry on? The parents just says "Well, glad thats over with"?


    Why would people continue to have children at all? Oops. sorry, didnt mean to get pregnant.

    I personally dislike having to work, pay bills, take care of multiple issues and having to worry about things going on in the world. Will you then make the decision for me? Will you pay my bills? Live my life for me?

    Perhaps because I cannot walk, the decision to use a wheelchair is also wrong because a chair is not part of the natural order? Kinda like 'If we were meant to fly, we would have wings'?

    Sorry to go off like this, but a family has to make their own choices in life. The only way I think You could make those choices is if You personaly take over. Take care of a person day in, day out, then it's your choice.
    Either that or we become a socialist society and leave it up to the state.
    Don't know about you, but I want to be able to make my own choices.
    Rick Brauer or just call me - Mr B

    http://www.riseadventures.org

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      #17
      Originally posted by PDnemesis
      The surgery to remove her uterus and appendix are unnecessary. She can be preventing from having children, and having periods in many other less invasive and reversible ways.

      The hormone treatment she is receiving is completely experimental. No one her age or even near her age has received such a high dosage of hormones. No one has any idea what effect it will have on her. This is the type of treatment that usually has to go through a very strigent approval process - and didn't. Why not?

      Melinda Gates is in charge of the hospital's fundraising program - the person in her position is an obvious target for this type of outreach. She has to answer to people who want to contribute to the hospital fundraising efforts.

      Just becausea person does something out of love and best intentions doesn't make it right.
      I guess you'd have to ask them why they didn't have to go through a stringent approval process. They're not marketing anything here so the FDA wouldn't be involved, I don't think. I think these things have to be approved by the hospital's ethics board, you have to find doctors willing to do them, and that is it.

      Who do you think should have been overseeing it? You're implying somebody shirked their duty but I can't tell who you are pointing a finger at.

      The blog says many kids with this condition don't survive past 5 or 6. Ashley is kind of a test case in that regard, the previous test cases just don't exist.

      I'm still not seeing Gates as an obvious target. I can't think of any other campaign that has ever used the name of the head of the fundraising program. I think that HER particular name is newsworthy and that is why it was mentioned. I'm not in charge of protecting Melinda Gates from mail but I do think it is odd. This issue has nothing to do with fundraising. Donors aren't really the same as stockholders.
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

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        #18
        I personally do not support this either. I think that the parents did not make this decision without agonizing over it for a long time. They are doing what they feel is for the best interest of the child...plain and simple.

        This would be a different story if they wanted to terminate her life or neglect her needs...but nothing that is stated in the articles I read nor in what was posted here states this. The only thing I see is that her parents love her...and they want what is best for her. I support the parents here...and if I was going to do any calling or letter writing...it would be to lend my support to these parents and nothing else.
        "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

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          #19
          I think they are choosing what is best for their daughter to take the best care of her later in life.

          If they didnt really care, they could have just shoved her in an institution and got on with their lives.

          I wish other parents cared as much as these do to make this agonizing decision.

          You are a crackpot for even riding this bandwagon!!! You have never walked in their shoes so you have no reason to judge them!!!! Just because you have a disabled child, you have not walked a mile in their shoes....every disability like SCI is different!!!!
          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


            #20
            Just because you have a child doesn't mean you are allowed to do with him/ her whatever you want. There were recently foster parents who kept their children with disabilities in cages. This was done upon the recommendation of professionals that were working with them to keep them safe while the foster parents slept. It was only when other professionals found out about it and intervened were these children put in other homes. The parents went to court and insisted that they loved their children, had consulted with professionals and were only doing what was best for them. What's the difference?

            Removing a healthy uterus to prevent pregnancy? Depo Provera shots have existed for several decades and are considered safe. ALL surgery presents risk. This surgery is experimental and no one knows what the outcome will be in a child this young.

            Removing a healthy appendix because of a 5% chance that something may go wrong with it someday and they have already cut her open and she is anethetized already? ? Why not remove her spleen too as long as you are in there cutting away. And why not remove her teeth since she doesn't chew and there are far more likely problems going to arise with her teeth than 5%.

            Giving a child adult hormones has unknown consequences. The doctors state they are monitoring her condition. So what happens if things go very wrong? - the damage will be done. Oen physician has suggested that these hormones may stop the child's bones from growing, but it may not stop her lungs, heart, kidneys, etc. to continue to grow to adult size. Her child-size body could run out of room for her adult organs. (This is exactly what is the cause of death for many people with specific forms of dwarfism.)

            There are very strict rules about using experimental medical procedures on children. The rules were not adhered to. The doctors circumvented established protocol that would have required permissions from a federal body that exists to decide whether such experimental procedures have enough merit to proceed.
            Ashley is a little girl worth knowing about:http://www.ashleyx.info

            Comment


              #21
              Just because you disagree doesn't give you the right to try and dictate what parents of a severely disabled child do with the medical advice of doctors, an ethics committee and a well-established hospital.

              I don't need you, Susan, to decide which dis "causes" I'll take on.

              My cause is for a cure.

              Comment


                #22
                Originally posted by PDnemesis
                There are very strict rules about using experimental medical procedures on children. The rules were not adhered to. The doctors circumvented established protocol that would have required permissions from a federal body that exists to decide whether such experimental procedures have enough merit to proceed.
                You are flat out wrong about this. All of the procedures and medications they used are approved and marketed. There is ZERO requirement from anyone, any body, governmental or otherwise, that requires any type of oversight or permission to proceed. There are no rules to adhere to in this situation, only clinical judgment and parental consent. Using a combination of approved procedures and therpies is NOT considered experimental from a regulatory viewpoint. You may want to argue that there should be, but that is a rapidly slippery slope. However, I can say that you are completely wrong on this point.

                I also agree that they made a decision in the best interest of their child, and that I cannot say what I would have done in a similar situation. But my guess? That I would have done the same.
                Wife of Chad (C4/5 since 1988), mom of a great teenager

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                  #23
                  I do not know about you...but if they already had me open....I would want them to take out my appendix too...I would not have to worry about it rupturing.

                  Taking out the uterus will not only prevent her from getting pregnant...but wouldn't that also prevent her from getting uterine cancer?

                  She is taking hormones to stunt her growth...how is that different than those that use growth hormone? At one time that too was controverial...

                  The "expert" the parents relied on in the children cage case is also up on charges...one person...not a medical staff...or hospital...don't you think that all of the pros and cons were talked about and thought through???
                  "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

                  Comment


                    #24
                    Parents have the right to make decisions for their minor children. These parents obviously love their daughter enough to make these tough choices on her behalf.
                    Daniel

                    Comment


                      #25
                      Originally posted by Rbrauer
                      "Parents don't own children"

                      So... could you possibly mean that children are independent?
                      That is an excessive and irrational leap. Stating the fact that children are not property is not in any way implying that children are therefore indepedent from birth. BUT the point of being a parent is to raise your children into independence. It is a process that takes time.

                      Now, obviously in Ashley's case, she is never going to be independent, but the general principle is a sound one. Children are not property that parents are free to do with as they will. There are laws and ethics governing certain practices and it is not out of line for someone to point these things out.

                      The assumption here is that these parents love their child. It has been pointed out that good intentions do NOT necessarily provide good results. All loving parents make mistakes. These people are not perfect.

                      It's also not out of line to bring up the idea of abuse. Some people have said that if these people didn't really love their daughter and have her best interests at heart, then they would have just thrown her in an institution. Not necessarily. Lots of people keep and abuse their kids. Happens every day. Why they do it, I don't know. But I don't assume that anyone who doesn't toss their kid out must love that child and must be doing the right thing.

                      FTR, I haven't formed an opinion about this situation. I'm just pointing out some issues I've seen in some of the arguments presented.

                      C.

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                        #26
                        I am in shock. What I don't understand is how one would need to make such drastic decisions with removal of uterus (And breast buds?) for fear of rape with their child who needs 24/7 supervision, which they want her kept small enough to do so themselves... so is deciding to do this connected to stunt hormone treatment and possible medical issues with the maturity of breasts forming/ovulation---GAWD I don't understand and now after writing this as best I can, I am not sure I want to. It comes down to how much is too much for me I guess. sigh.
                        "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.

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                          #27
                          I've read about this. Put the parents in jail and put kiddo another place, this is unheard of.

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                            #28
                            The removal of the breast buds was done to prevent her from growing large breasts, of which there is a strong family history. The main reasons cited were for comfort - laying and also with her chest straps. I believe the worry about rape was a side note, although her parents have surely considered that someday someone other than themselves will be taking care of her, most likely. If she is not going to bear children or be a sexually active adult, I see no harm in removing the breast buds. I also see no problem with removing the uterus. Again, that was done mostly for a comfort issue. Ashley does not need to deal with menstrual cramps and periods and will certainly never willingly bear a child. She can't even lift her own head off the pillow, I say make the child as comfortable as possible in the long term and let her family care for her in peace.

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                              #29
                              I say; parent's or system is wrong. Still, parent's should go to jail, doc's involved as well.

                              Comment


                                #30
                                Originally posted by Tiger Racing
                                That is an excessive and irrational leap. Stating the fact that children are not property is not in any way implying that children are therefore indepedent from birth. BUT the point of being a parent is to raise your children into independence. It is a process that takes time.

                                Now, obviously in Ashley's case, she is never going to be independent, but the general principle is a sound one. Children are not property that parents are free to do with as they will. There are laws and ethics governing certain practices and it is not out of line for someone to point these things out.

                                The assumption here is that these parents love their child. It has been pointed out that good intentions do NOT necessarily provide good results. All loving parents make mistakes. These people are not perfect.

                                It's also not out of line to bring up the idea of abuse. Some people have said that if these people didn't really love their daughter and have her best interests at heart, then they would have just thrown her in an institution. Not necessarily. Lots of people keep and abuse their kids. Happens every day. Why they do it, I don't know. But I don't assume that anyone who doesn't toss their kid out must love that child and must be doing the right thing.


                                FTR, I haven't formed an opinion about this situation. I'm just pointing out some issues I've seen in some of the arguments presented.

                                C.
                                ITA.

                                *runs out of thread*

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