Parents Under Fire for Making Daughter Stay Child Forever

  1. Parents Under Fire for Making Daughter Stay Child Forever

    FOXNews.com - Parents Under Fire for Making Daughter Stay Child Forever - Health News | Current Health News | Medical News

    Her name is Ashley X, and she is the little girl who will never grow up.

    Until New Year's Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children's Hospital as they outlined a treatment so radical that it brought with it allegations of "eugenics", of creating a 21st-century Frankenstein's monster, of maiming a child for the sake of convenience.

    The reason for the controversy is this: Three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of estrogen to stunt her growth.

    In other words, Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6 years old.

    All I can say is that I am glad that I was not a member of the ethics committee in this case.

    What do you think?
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  2. 31 Comments

  3. by   TXstudentRN
    http://www.telegraph.co.uk/news/main...uashley104.xml
    hormones used to prevent child from growing
    by richard holt and agencies


    last updated: 4:35pm gmt 04/01/2007

    the parents of a nine-year-old girl with the mental ability of a three-month-old baby are using hormone treatment to prevent their child from growing to adult size.

    the girl has a rare brain condition which leaves her unable to walk or talk and her parents believe she will have a better quality of life if she remains small.

    the american youngster, whose name is given only as ashley, suffers from a condition called static encephalopathy.

    her parents called her "pillow angel" because she stays wherever they place her, usually on a pillow.

    three years ago, fearing that she would one day become too big to lift or move easily, her parents took the highly unusual decision to keep her small with a treatment known as growth attenuation.

    ashley, who doctors expect to have a normal lifespan, has had a hysterectomy, surgery to prevent breast growth and high doses of oestrogen that will prevent her from reaching adult height.


    my brother sent me this link and i found it quite interesting- i'm curious to see what others will think! the story continues on in the link and there's also a link to the blog they have going on about her... happy new year, everyone!
  4. by   NurseyBaby'05
    I saw this yesterday and was going to post it. I'm still sorting out my thoughts to really comment on it. My gut reaction is one of getting the creeps, but I really need to think it out a little more.
  5. by   JeanettePNP
    From the article, it's clear that Ashley is never going to grow up in any case. The issue was whether to let her grow to adult size with an infant-sized brain, or leave her small. It makes the whole decision seem alot more reasonable. Her situation is tragic either way.
  6. by   tencat
    Wow. It sure is a slippery slope, isn't it? I read the article yesterday, and I still don't know what I think. On the one hand, keeping her small really helps her caregivers still be able to care for her adequately and keep her from being totally bedridden (because they can still carry her, move her, etc), but......it seems a little unethical to me that other people are allowed to make this kind of decision for another person who is unable to partcipate in the decision making process. It indirectly benefits the patient, but it seems to me that it's more an issue of convenience for the caregivers.....I have to think about it some more.
  7. by   EmerNurse
    Pretty much, I'm with tencat on this - it's just so.... so...odd, I guess.

    OTOH, I've seen kids like her in institutions, whose families have pretty much written them off for life. If this decision means that she can be cared for at home for the life of her parents (and then perhaps other family members), I have to think she'd have a better quality of life overall. Given that her brain will never grow up, it's at least a little palatable that her body won't quite, either.

    I would never even consider this is ok in a kid who is mentally retarded (say at a 6yr old level) who can ambulate, think at all, etc, even though I know those parents might have just as difficult a time with that child in adulthood.

    Like someone above said - I'd have hated to be on that ethics committee.
  8. by   Katnip
    I wouldn't want to touch this one with a ten-foot pole while double gloved.

    I can understand the rationale the parents used. But how big is the can of worms they opened?
  9. by   Spidey's mom
    I just read this in my morning newspaper and was going to post it too.

    I'm going to step out and say I'm appalled. We have a LTC that is part of our hospital and I walk through it every day on my way to the cafeteria and I see "bedridden" human beings who get excellent care. We don't cut things off to make it easier.

    "Ashley's smaller size and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

    You can't love, comfort, touch and snuggle a child who grows normally?

    Ashley's parents say it will reduce the risk of bedsores but good care will do that without having to take a child's uterus out and breast tissue off.

    I realize how hard it is to care for a child at home and part of the article is completely right - we do a terrible job of supporting parents with disabled children.

    In my paper there is a photo of Ashley, laying in a bed looking up at the camera . . . I cried.

    steph
    Last edit by Spidey's mom on Jan 5, '07 : Reason: typos
  10. by   ZASHAGALKA
    I think that this is NOT a decision that I would have made. However, I am not those parents and cannot imagine being in their position. I certainly will not gainsay them.

    Their daughter's life is of such poor quality that any measure that can bring any amount of solace or feeling that they are actively assisting their daughter is one that I just could not dismiss, out of hand.

    We normally say that there comes a point in the process where the family becomes our primary patient BECAUSE there is nothing more we can do for the patient themselves. I think this is the case here. This was not a treatment for Ashley as much as it was for her parents.

    So be it. First do no harm. Ashley's quality of life was harmed in no way, and could likely be improved both under the parent's rationale for doing so, and perhaps more important, for their own piece of minds as they daily care for this unfortunate girl.

    I wouldn't have had an ethics problem with it at all. IF I had been on that committee, I'd of green lighted it.

    ~faith,
    Timothy.
  11. by   JeanettePNP
    Here is a link to a blog by Ashley's family, with pictures:
    The "Ashley Treatment"
    She does look happy and well cared for, however, as other posters pointed out, she could have received the same care without tampering with her body.
  12. by   Spidey's mom
    Quote from ChayaN
    Here is a link to a blog by Ashley's family, with pictures:
    The "Ashley Treatment"
    She does look happy and well cared for, however, as other posters pointed out, she could have received the same care without tampering with her body.
    This is my point - she could have received the same care w/o tampering with her body.

    I take care of "bedridden" people all the time - we are taught in the first few weeks of nursing school how to do that. Our CNA's are awesome at caring for these human beings.

    I agree that Ashley's parents could use help with her care - but I don't agree with "tampering" with her body in order to keep her a little girl. We need to work on getting them help with her care.

    Wow, Tim . . . you and I finally have an issue in which we disagree.

    steph

    There are several families in our community who have disabled children - some just like Ashley and I guess I've just seen such great care by the parents and the community here that this seems so foreign to me. And scary. And sad.
  13. by   ZASHAGALKA
    Quote from stevielynn
    Wow, Tim . . . you and I finally have an issue in which we disagree.
    Well, I don't personally agree with their decision. I just wouldn't place myself in between them and their kid. It's too highly personal for MY opinion to matter.

    In reality, and I don't want to turn the thread here, but it is a parallel in my mind: this is the SAME rationale behind my belief that the parents should of had the final say in the Terri Shiavo case.

    Her ex-husband had moved on. Make no mistake, taking on a new common law wife made him an 'ex'. His interests were conflicted and yet, he demanded that her parent's still very attached and personal views weren't of consequence.

    Personally, I wouldn't have kept Terri alive either. But, that shouldn't have been a decision for somebody that made himself an 'ex' to make. Just as while I might disagree with the decision here, I wouldn't place myself in the way of it.

    ~faith,
    Timothy.
    Last edit by ZASHAGALKA on Jan 5, '07
  14. by   Spidey's mom
    Quote from ZASHAGALKA
    Well, I don't personally agree with their decision. I just wouldn't place myself in between them and their kid. It's too highly personal for MY opinion to matter.

    In reality, and I don't want to turn the thread here, but it is a parallel in my mind: this is the SAME rationale behind my belief that the parents should of had the final say in the Terri Shiavo case.

    Her ex-husband had moved on. Make no mistake, taking on a new common law wife made him an 'ex'. His interests were conflicted and yet, he demanded that her parent's still very attached and personal views weren't of consequence.

    Personally, I wouldn't have kept Terri alive either. But, that shouldn't have been a decision for somebody that made himself an 'ex' to make. Just as while I might disagree with the decision here, I wouldn't stand in the way of it.

    ~faith,
    Timothy.
    I don't equate Terri's case with this one. Although I do agree that her parents should have had the final say.

    I really think "tampering" is the right word and thank Chaya for it.

    Ashley's body is being "tampered" with to keep her a little girl so she isn't so much of a physical burden to her parents . . . I personally don't think there is any justification for this. And regardless of whether her parents want it or not, some things are just wrong.

    Again, we take care of people who are disabled every single day and the answer here is to do something about getting families more help, not taking a child's uterus out and breast tissue off and putting her on meds that stunt her growth and keeps her a child forever. What does breast tissue have to do with physical care?

    steph

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