Category: News and Views
I don't know how I feel about this one, what are your thoughts?
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Parents keep mentally disabled daughter child-size for easier care
SEATTLE POST-INTELLIGENCER
http://seattlepi.nwsource.com/local/6420AP_WA_Ashleys_Treatment.html
Thursday, January 4, 2007 · Last updated 6:56 a.m. PT
Parents keep mentally disabled daughter child-size for easier care
THE ASSOCIATED PRESS
SEATTLE -- The parents of a mentally disabled girl have had a Seattle hospital give her treatments to keep her child-size so that she'll be easier to care
for.
Nine-year-old named Ashley recently completed 2 1/2 years of treatments.
The treatments included a hysterectomy, the removal of her breast buds, and a course of estrogen.
KING-TV reports the treatment was approved by the ethics board at Children's Hospital. Dr. Benjamin Wilfond said the hospital agreed to the treatment to
benefit the child.
She has a severe brain impairment called static encephalopathy. She can't walk or talk. She's fed through a tube and has the developmental ability of a
baby.
Ashley's parents bring her to Children's Hospital every three months so that doctors can monitor her height, weight and estrogen levels.
She's 4-foot-4, weighs 70 pounds and doctors believe she is almost done growing. Without treatments doctors believe she would have grown to 5-foot-5, 125
pounds.
That would have made her too heavy for her caregivers -- her parents and grandmother -- to lift, move and bathe her.
(KING-TV)
It does make sense for easier care, but I'm not sure how I feel about it ethically. But I gess I have to give the parents credit for taking care of her and not putting her in an institution.
It would seem with this procedure that the few advancements that have been made over time in the mental health field have totally taken a back seat at this juncture and way back into the deepest of dark ages this procedure has taken this young person. To be locked not only mentally but physically as well...
I think that's sad, changing a child so much just for the care-givers' own convenience. I mean the child may not be able to understand or even know that she is different from others whether or not she had had those procedures/"treatments" done, but to me, that still doesn't make it right for them to have done that. I would see it like that eugenics thase they had where they sterilized people who had and were thought to have mental/intellectual disabilities; I mean part of it had to be so that they would be easier to "take care of" in some cases. The case mentioned on this discussion isn't, exactly, like that, but somewhat. Yeah, it was great they didn't put her in an institution or end her life, but I don't know. I just couldn't see myself medically and physically changing my child just so I could easily move her around/care for her.The story didn't mention whether or not they tried to or could've hired a caregiver/put her in respit care regularly/once in awhile, but I think that's what they should've spent the money on. I don't know; I feel more for the girl, whether or not she's aware of what happened/is happening to her.
This is the kind of issue that will plague mankind until all disabilities this severe are eliminated. Tinkerbell, I agree. The story doesn't address the issues of respite care or a group home. I'm inclined to agree with you somewhat in that this treatment/remedy is rather harsh. On the other hand, given the behaviors and attitudes of caregivers, this individual might be subjected to rape, pregnancy, or other types of abuse upon entering puberty. Who would take care of any offspring? This is a really hard call.
Lou
I really don't like what they've done to this child. There are many mentally disabled people in this world who are cared for just fine without such harsh steps being taken. I understand that care-givers need support, but I think restricting this child's natural physical growth for there own convenience is out of line. this girl has enough obstacles. Why throw more in her way? It could be said that she'll never be aware enough to know what's been done to her. That may be true, but it may not. Who knows what she's aware of? It just seems too...harsh really is the best word.
First the difference is with eugenics people knew what was happening to them, this girl does not. Second at least this way she can stay with her family, instead of being forced into an institution. third I'm glad that she won't be able to reproduce, in cases as seveer as this starilization is the best option.
They have sterilized mentally handicapped people for years. I understand why they did it, but from an ethical standpoint, I'm just not sure.
Yeah...I'm not sure about the ethics on this one. I can understand why it was done, but is it really ethical?
This has causeda media storm in britain and I am unsure of how I feel, as for keeping Ashley as she is, to make it easier to move her.Did they never consider a hoist, which would enable them to move her around without any strain on them. And this argument against Ashley having sex ect, if she is to remain with her family under their watchful eyes, then who exactly is going to take advantage of her.
I totally agree with Goblin on the fact that there are devices that can help one move a person who would be unable to move themselves, and also that if she is going to be taken care of and watched there should be the problem of sexual abuse. Sure it might be easy for someone to take advantage of her, but honestly, it could be like that with any child if they are not being watched/checked on/cared for by a trusted adult. Also, I totally agree with what SisterDawn had to say on this.
Oops. There should, not, be the problem of sexual abuse.
I agree with Goblin and others on this. I'm not sure how much forethought went into this procedure before they did it.
The problem for me is, where do you draw the line? Could a poor blind baby be prevented from developing physically and intellectually so they won't have to live in a world without sight?
Maybe that sounds far fetched, but, like I say, where do you draw the line?
Bob
It is ethically discusting, nothing more to say. I think these people should have the child taken from them and put in prison forced to have that shit done to them or worse just shoot them.
More from the news.
Disabled Child's Parents Defend Growth-Retarding Therapy
By Neil Osterweil, Senior Associate Editor, MedPage Today
January 05, 2007
Additional Parenting Coverage
SEATTLE, Jan. 5 -- Parents of a severely cognitively and physically disabled girl have publicly defended their decision to retard her growth through the
use of hormonal therapy and surgery, saying they were acting out of love and compassion.
The parents said they were thinking only of the best interests of the child, now nine years old. She has static encephalopathy, with marked global developmental
deficits, and is reported to be non-ambulatory, with the cognitive abilities of a three-month-old child, and no hope for improvement.
The parents call the girl, named Ashley, their "Pillow Angel," because she stays wherever they place her, most often on a pillow.
A story about the child and her parents' decision to subject her to high-dose estrogen, a prophylactic hysterectomy, and breast tissue reduction surgery
(to prevent familial breast cancer) was published in the Los Angles Times on Jan. 2. It sparked international headlines and reactions ranging from sympathy
for the parents to outrage at what some see as "mutilation" in order to make the caregiver's lives more convenient.
The so-called "Ashley treatment" was described by pediatric endocrinologist Daniel F. Gunther, M.D., M.A., and ethicist Douglas S. Diekema, M.D., M.P.H.,
both of the Children's Hospital and Regional Medical Center in Seattle, in the October issue of the Archives of Pediatrics & Adolescent Medicine.
The basic premise is that high-dose estrogen can inhibit growth and advance maturation of epiphyseal growth plates in order to keep the child's stature
short.
"Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size," they
wrote. "If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate
the option of continued care in the home."
Her physicians estimate that the treatment will keep Ashley's height at around 4 feet, 5 inches, and her weight at approximately 34 kg (75 pounds), rather
than the predicted adult height and weight, without intervention, of five feet, six inches and 57 kg (125 pounds).
Photos of the child are available for viewing on the parents' blog, at http://ashleytreatment.spaces.live.com/blog/.
In the blog, the parents answer critics' charges and explain in detail their decision to stop her growth and to subject her to hysterectomy, and to surgery
to remove her breast buds.
"Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities
and social gatherings," they said.
They further stated that "the 'Ashley Treatment' is intended to improve our daughter's quality of life and not to convenience her caregivers," and that
"providing our daughter with this treatment was an easy decision since the benefits by far outweigh the risk and short term discomfort associated with
the surgery."
Dr. Diekema, who met with Ashley's parents, said that the child has not suffered harm from the surgery, and that he is convinced that her parents lover
her and are acting in her best interests.
Some medical ethicists have criticized the parents' decision, saying that while it may make her care more manageable, it presents a troubling precedent
for the treatment of severely disabled children. Others have pointed out that it highlights the inadequacies of care for people with severe disabilities.
In an editorial accompanying the case report in the Archives of Pediatrics & Adolescent Medicine, Jeffrey P. Brosco, M.D., Ph.D., and Chris Feudtner, M.D.,
Ph.D., M.P.H., of the department of pediatrics at the University of Miami, applauded Dr. Gunther and Dr. Diekema for framing the issue, but said the efforts
were ill-advised.
"American society in general, and the medical community in particular, has traditionally sought simple technical fixes for seemingly intractable problems,
which often combine biological and social aspects of human existence," the editorialists wrote. "In the end, what might be most distressing about attempts
to shorten children with profound disabilities and thus lighten the load on their parents is not only that it might not work or cause undesired adverse
effects or be misused," they wrote.
"No, more distressing is how this solution fails to situate the plight of these parents, struggling to care for their children, in the larger context of
a society failure to provide adequate social support in this most admirable of undertakings."
But others, such as Lainie Ross, M.D, Ph.D. a professor of pediatrics and associate director of the MacLean Center for Clinical Medical Ethics at the University
of Chicago, say that decision must ultimately be viewed in the light of the parents' choices.
"I think that the parents were trying to do what is best for their child," Dr. Ross said in an interview. "We have to remember that this is a child who
is so severely cognitively disabled, who could never benefit from increased height because she never stands and will never be able to stand or sit up.
The fact that they had to remove her uterus, that's something she could also never benefit from as she could never engage in sexual intercourse and never
voluntarily become a parent."
"All the things that the parents did were to allow Ashley to stay small and therefore be able to have greater mobility lying down, as well as to make it
so that she could live at home and that they could care for her," she said. "These are loving parents acting in her best interests, and we should respect
that."
At the same time, Dr. Ross warned that decisions about Ashley's care were made entirely within the context of a single family.
"It would be very different," she said, "if the state said we want all disabled children to be small so that they're easy to take care of. That would be
a very different story and that would be wrong."
I agree with Jenny about the parents needing the child taken away from them. And yes, I do see how we're on a slippery slope here in our society. I do understand the origianal premise behind sterilizing mentally disabled people, and yet, how soon till that extends to us as blind people, or to anyone else with a disability, or anyone our society deems unable to raise a child?
Sister Dawn, in some respects we are a bit further down that slippery slope than you might think. I went to a residential school. I remember my mother telling me about some parents having these kinds of discussions. The fact that it has been done already to this child sets a kind of precedent, or so it seems to me. Bob, thanks for the update.
Lou
To some extent I think it's another example of society shirking it's responsibility to its citizenry.
You have the same people who deny a woman's choice to abort an unwanted pregnancy, turning inmates out of institutions to wander the streets alone and desperate.
The parents in this case are citizens of the United States, and, as such, I believe, should be able to turn to their government for help in a crisis situation.
Ashley is also a citizen who should be able to expect protection from its government from abuse from her well-meaning parents, and I do believe this is medically sanctioned abuse.
However, it's early in the morning where I am, and I guess I'm just in a bad mood, and will look more favorably on the parents once I've had some coffee. I wonder if Ashley ever wakes up in a bad mood; boy I would in her case.
Bob
Bob, the sad thing here is that people are saying she functions on the cognitive level of a three month old. I don't think this gives us as a society to write her, and others with the same disease/syndrome off, which is exactly what we're doing. We only think that's how she functions.
When I first read this article I thought much the same as many on here, that it is wrong for people to play God, that it sets a precedent etc. Then I became involved in a discussion on another forum, and a lot of points were raised that led me to think otherwise.
Firstly, in such situations I think sterilisation is a good idea, and I think so for the benefit of the child. This little girl has the mental capacity of a 3 month old baby. She will never be capable of having a sexual relationship. Now think about what it must be like for a 3 month old baby that is actually the size of a grown woman to have to go through the pain of menstruation, the indignity of having to be cleaned by other people. This little girl goes through enough already without having to be put through the indignity of that. This is not about who is and who isn’t allowed to raise a child. This girl will never have the mental capacity to be able to raise a child, she doesn’t even have the ability to sit up on her own. And yes, sexual abuce needs to be considered. If this girl goes into care, she may be at risk of sexual abuce, not necessarily from carers, but from patients who have similar special needs to her but who, in reality, don’t know that what they’re doing is wrong.
With regard to the drugs to prevent her further growth, again I have mixed feelings on the matter. Part of me thinks that it is a step too far, however I can see the parents’ motivation for doing what they have done.
Some people here have made references to using hoists etc to lift Ashley, bearing in mind she is, really, a baby. If Ashley doesn’t grow any further, her parents will be able to continue to lift her, to cuddle her, as they would with any baby. How impersonal is it to use a hoist to lift your child? While ethically I think that this does raise huge questions, I do think that people shouldn’t be so quick to judge one particular set of parents.
Those that talk of the parents’ convenience, how convenient do you think they’ve had it over the past 9 years? What must it be like to have to tend to the every need of your 9 year old daughter, having to treat her like a baby, knowing that she will never progress beyond the point she is at now? I think one can only judge how it is once you’ve walked a day in their shoes, and to be honest, I wouldn’t want that for any money in the world. If they wanted convenience they could have just signed her over into care, but instead they want to care for her for as long as they possibly can, and this treatment will allow them to do so.
well said Claire. I agree with everything there.
couldn't have said it better.
The child in the article is practically a pet to its parents, and that's all children with such extensive disabilities can ever be like it or not. She is simply living for their pleasure and no other reason. Since she only exists for this reason, they can do with her as they please.
your sick! what they have done is crule and they should be put in a simila situation.
That wouldn't achieve the best result for Ashley, as without her parents, she would be consigned to an institution.
3 month old babies feel cold warmth hunger and fatigue, so she operates on a very basic level, but she can still register discomfort, believe me they do.
yeah they do
I wonder if institutional care might not be an option that might have been better in this case. I won't sing the praises of institutionalization, but sometimes it's better than other options: perhaps better than the option these parents chose.
Just wondering.
Bob
I want to post something that I read on another forum, from the parent of a severely disabled child.
“No-one can "know"
I love my daughter who is 17 now. She has severe learning, psychiatric and medical difficulties.
She is really tiny, still wears nappies and behaves like a toddler.
She has fully grown breasts and has recently started her periods.
I am scared to death for her, really really scared out of my wits.
No I cannot manage her anymore and that is why she will be living in a care home when she reaches 18.
I wish she was still a little girl and could look after her myself. It totally freezes me to even faguely consider the type of care she will be getting whilst I am not around to over-see it. I love her and she has been such
a little love over christmas.
I hate accidentally touching her boobs whilst getting her dressed and accepting that her body is quite appealing to the people who know she is vulnerable.
BUT I know I cant cope with the level of care she needs and wish that I could have stopped her biological clock.”
None of us have ever been there. None of us knows what it is like caring for such a severely disabled child, 24 hours a day, 7 days a week, 365 days a year. Most who make the judgment call do so based on an emotional response, based on what we think is right or wrong. But how can you ever know what it is like if you’ve never been there? Those of you who have children, try to imagine what it would be like handing your baby, because she is and will always be a baby, into the care of strangers. Not being able to choose what clothes she wears, not tucking her into bed at night and kissing her goodnight. Not knowing who is looking after her and how she is being looked after, whether she’s crying and someone is comforting her. And knowing that if someone is comforting your baby, it isn’t you, but it should be. Now you think of all that and continue to tell me that this girl is best off in institutional care where she can lie all day in a bed and be lifted by hoists instead of the loving arms of her parents. Where she will never go out because she’s too big to go out because she can’t sit up so going out in a wheelchair is not an option.
Those of you who think it’s sick, do you honestly think that her parents made this decision lightly? Do you think that they sat down and said “oh I know, let’s remove her breasts and her uterus and give her injections to keep her a child. How easy our lives will be then”. No. They had to seak medical advice, doctors had to go to an ethics committee and state their case. This wasn’t just a spur of the moment decision, there were medical professionals involved, if at any time someone thought this child was at risk then she would, of course, been taken into care, but the parents are doing what they think is best for their child, because they love her, and want to be the ones to care for her, for as long as they can. How easy is it do you think, to make the decision to stop your child from growing, to in effect accept that she is and always will be a child. The operations to remove her uterus were necessary because she has begun puberty early. She could not cope with having to go through menstruation and everything that that involves. She is having her breasts removed because she spends an enormous amount of time on her tummy, and having large breasts, as run in her family, will be immensely uncomfortable for her. The treatment to stop her growth is hormonal, no surgery required there.
This is one case, and as I have stated before, I think that unless you can know for certain what those parents and that child go through every day of their lives, no-one has the right to judge.
well, I am not sure what to say on this, it makes it easier for care, but how are they going to feel if the doctors one day figure out a way to help the brain disorder and she gets some better and is upset because she doesn't look like everyone else or something
then she can talk to her parents about why they did what they did and come to some understanding with them. you forget that even if by some amazing chance she becomes mobile learns to think for herself and move on her own, she's then got to be educated to the levil where she can understand what's happened to her. I think they've done the right thing.
It is in absolutely nobody's best interests that children who cannot speak, like the ones spoken about in this discussion so far, physically develop to the point that adults are developed. There are several reasons for this, but the most important one is health and safety. Children with these conditions can be aggressive because they can't handle situations in other ways. It isn't wise that they should have the bodies of adults. If a male child with such severe disabilities grows up to be big and tall, full of mussle, quite heavy too, and his mother is very small, thin, and not that strong, should he turn on her when nobody is around, she could be killed. That is not an exaduration. Since these people are going to school, and in cases when they are at school for the day they are travelling, should they lose their temper in a taxi full of disabled people and become aggressive, they may be dangerous to other children, to an escort who may be there to oversee that everybody is safe and behaving, or worst still, the driver could be attacked whilst driving. Should the driver be attacked when driving down a busy road, a crash could occur, and children could die. Should for some reason a crash occur while the escort is standing in front of the child to contain the physical behaviour, the escort could go flying through a window and die. These factors support the idea which I have, that it should be the law for all children with severe disabilities to be kept small and biologically/physically under-developed.