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Thread: Mutilation of daughter as disability treatment

  1. #41
    Quote Originally Posted by antiquity
    Oh really? Thanks for making me aware of that. I certainly wouldn't have sought clarification regarding her comment if I had advance knowledge of what she meant by it.
    Seriously? You weren't making a major inference in order to further your point? OK. I stand corrected. I thought you were intentionally reaching there. I do find it a bit surprising that you really thought Betheny was saying that being "different" in this context necessarily means one is "less than". I thought her post as a whole would have negated that rather clearly.


  2. #42
    Quote Originally Posted by Tiger Racing
    Seriously? You weren't making a major inference in order to further your point? OK. I stand corrected. I thought you were intentionally reaching there. I do find it a bit surprising that you really thought Betheny was saying that being "different" in this context necessarily means one is "less than". I thought her post as a whole would have negated that rather clearly.

    I wasn't making an inference but you certainly were by assuming that I possess advanced knowledge of her thoughts and was seeking clarification just for the heck of it.

    Beth said:
    That makes her different from us and I don't see why the same rules should apply.
    And I said:
    Does different mean less?
    Honest question. Sorry if it made you uncomfortable but I doubt if Beth was offended by it so I'm still interested in hearing her response.
    Last edited by antiquity; 01-11-2007 at 06:42 AM.

  3. #43
    Quote Originally Posted by Tiger Racing
    By therapy you mean invasive, elective surgery?

    Yeah, plus radical hormone treatments too.

    The process is unthinkable but to me, Ashley's life is too.

    I didn't mean different = less than, but it does mean radically different from the lives we lead. My only point when I said she is different was that because her life is so different we might need to look at the results of this treatment without applying our judgments to it.

    My main problem here is the letter written in the first post. That woman's child is moderately disabled by Down's syndrome. That is a far cry from a full-grown woman with the mental capacity of a 3 month old-what Ashley will become- yet she presumes she's been in Ashley's parents shoes. (Like the people that tell us-I know how you feel! I was on crutches when I sprained my ankle! Uhhh, yeah, can you spell clueless?) She says "If the parents put the energy into getting help and services that they've put into seeking butcherous medical intervention for their child"-sorry for the paraphrase but that is how I read it. And it isn't her call to tell them how to spend their lives or how to parent their child. Also, people tend to think there are many more services to help the disabled than actually exist. It's not the parent's job to make advocacy for more services their life's calling. They already have a life's calling!

    Maybe the parents are wrong. I don't get the feeling that they are sick twisted people or bad parents though. Ashley is their great joy. They just want to be able to manage her physically into the future.

    I like my breasts and uterus. I am cognizant enough to know I have them, that they have given me joy and carried and nourished a child I love. If I were never going to use them, or even play with the possibility of using them, if they were going to cause me less joy, more pain, inconvenience for my caregivers, I might not like them so well.

    Ashley never had functional or decorative breasts or uterus. She is not aware they are missing. She won't mourn their loss. Her caregivers won't mourn their loss. Nobody will miss those things except some internet buttinskys that miss them in theory but would never have had to deal with the realities of their existence.

  4. #44
    Senior Member
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    Anybody think about a 100 pound 3 month old with 20 pound breasts that lay flat all the time(the family history of big breasts influenced their decision) and having a monthly period? Even in Able bodied people big breasts cause health problems. Able bodied people get irritation under the breasts sometimes if they are overly big. I know when I worked in a nursing home we had elderly patients with open wounds under their sagging bosums especially more prominent in bed ridden people. What are they going to do hang her from the ceiling to relieve the pressure of the boobs laying on her chest all the time. Imagine taking her out in we dont want them to be limited to sitting in their house all the time do we? The parents would have to harness these things in a bra...rolling her too and fro even at 100 pounds, this would be a challenge. Now if you dont put them in a bra and leave them hanging then there is the risk of pressure sores and fungal infections underneath.

    I cannot imagine a three month old baby on her period. Think about the mess. Think about the moisture that can damage her skin and cause sores. It is a nasty experience for an Able bodied person. Urine and poop is bad enough but add a period... Periods in bed bound people can cause yeast/fungal infections...yeast/fungal infections that progress to the outside of the body. Nothing is more miserable than this...I know from experience. The family is already doing round the clock care for someone who will never even know she needs to go to the bathroom.

    I dont think the people who are against this are against it for the right reasons. As far as the appendix goes, if she has a regular appendicitis how is she ever going to tell her parents she is having pain in the right lower quadrant....she is never going to be able to say "it hurts here mommy".

    A high functioning downs syndrome person is in no way an accurate comparison to a three month old bed bound adult. There have been downs syndrome people who have got married and had children.

    Again we are discussing this case, not all disabled. In each individual case you have weigh the risks and benefits of any procedure. The issue of becoming pregnant is nil as their are some health benefits to the decision these parents made. But yet like the original poster, someone always has to have an agenda. Would you do this for every disabled???? NO Each disability is different...if I were bed bound I would have had a hysterectomy in a heartbeat just because of the mess. If i hadnt wanted children, I would have had a hysterectomy in high school but that is just my opinion.

    Leave these parents alone they are doing what they feel is best for their daughter to provide that she has a quality life. After all QUALITY does outweight QUANTITY in a case such as this.
    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

  5. #45
    Just as a point of information, my son is not what is often considered high functioning person with Down syndrome - rather the reverse. And his birth having been born addicted to cocaine and alcohol meant he had a very very medically challenging beginning to his life. His 'failure to thrive' did not end until the summer he turned 5, until that point his life was held in a very tenuous balance. His IQ is 43 (although I personally don't take any stock in the meaningfulness of IQ scores.)

    People have interfered with our lives on more than one occassion when I made decisions contrary to the norm. As much as I hated that they did it, I am grateful that they did, because it demonstrates that people do care about the welfare of my son and were willing to stand up for him when he was unable to stand up for himself. Safeguards are in place for children/ adults like Ashley and my son because they do not have the ability to make a phone call to ask for help if the people who love them harm them - with or wthout good intentions.

  6. #46
    Senior Member zillazangel's Avatar
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    This treatment does not fall under IRB requirements as detailed in the regulation you quoted PDnemisis. The physicians published a case report, which is a study of the progress of an individual who received marketed, approved treatment(s). These are exempt from IRB approval as there is no control group, no non-approved therapies, nor any pre-post method of comparison.

    This is what I do for a living. I am very familiar with when an IRB is required and when it is not. I read the paper; it was not required based on the description of the procedures. Also, NO medical journal would publish information that was obtained in violation of FDA regulations. I peer review for many medical journals and that is the absolute first thing you check as a reviewer.

    So, to summarize: you are flat wrong about the regulations. ETA: you obviously still disagree with what they did, but they did not violate GCP (good clinical practice) guidelines so your claim that "the rules were not adhered to" is incorrect. I respect your right to disagree with what they did however. That is your right.

  7. #47
    Two people I know personally who currently sit or have just until very recently sat on IRB boards disagree with you.

    Neither consider the the treatment Ashley received to fall within what the treatment was marketed and approved for.

    If they decide to go public with their letters they posted on a private listserv I belong to I will publish them here.

  8. #48
    Unjustifiable Non-therapy

    A response to Gunther & Diekma (2006), and to the issue of growth attenuation

    For young people on the basis of disability


    The Board of Directors of the American Association on Intellectual and

    Developmental Disabilities (formerly known as the American Association on Mental Retardation)

    As leaders of the American Association on Intellectual and Developmental Disabilities, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities, we have great sensitivity to the concerns facing parents of children with profoundly disabling conditions. They indeed face many extraordinary challenges as they strive to raise their children, and they should be provided with the supports and services they need to ensure that their children, as any others, have opportunities to achieve all that life has to offer. Naturally, these services and supports include medical and habilitation therapies. We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks.

    Gunther and Diekema1 have described a controversial intervention they provided to Ashley, a 6-year-old girl with profound and multiple impairments, which they refer to as “growth-attenuation therapy.” This intervention, approved and apparently promoted by the parents, consisted of high doses of estrogen to bring about a permanent attenuation in her size. Together with a hysterectomy and removal of both breast buds, the intention was to minimize the likelihood of a future out-of-home placement by maximizing the future comfort of this child and

    ensuring a manageable care-giving burden for parents who wanted very much to maintain their daughter in their loving environment.

    The ultimate and worthy goal in this case was to ensure a higher quality of life for Ashley through the avoidance of an eventual placement outside of her family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of the many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those needs throughout their adult lives. We also recognize the many challenges faced by physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. Gunther and Diekema, as well as Brosco and Feudtner2, discuss some these issues in the context of growth-attenuation therapy and seek responses from the field to inform future practice. As the current leadership of the former American Association on Mental Retardation and now the American Association on Intellectual and Developmental Disabilities, we view growth-attenuation as a totally unacceptable option. We share the concerns raised by Brosco and Feudtner, and we will add our own to theirs.

    In Gunther’s and Diekema’s judgment, growth attenuation offers reasonable expectation of improved quality of life in this case. However, the history of the medical establishment’s involvement in exactly these types of quality of life issues has, as noted by Brosco and Feudtner, led to the support of some very regrettable past policies (e.g., involuntary sterilization, lifelong involuntary institutionalization). All physicians must recognize that the decisions they make will be colored by their subjective views of the status of their patients. In stating that there will be no significant future improvement from her baseline, Gunther and Diekema reveal that they and their colleagues recognize little potential for growth and development of this six year old child. It is not then surprising that they find it “hard to imagine how being smaller would be disadvantageous to a person whose mental capacity will always

    remain that of a young child” (p. 1016). The abundant evidence that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated were not mentioned, and while we do not pretend to be as familiar with this situation as the treating physicians, we think that extant case histories of people with cerebral palsy incorrectly diagnosed as having profound mental retardation should be recognized and discussed.

    Brosco and Feudtner questioned the efficacy of the procedures described by Gunther and Diekema, indicating that there is no guarantee that growth attenuation and hysterectomy will effectively delay out-of-home placement. We agree. Further, because the future development of any six year old child will depend on many factors, the medical, social and programmatic needs of the adult Ashley will become cannot be anticipated with certainty. Over recent decades, the principle has been firmly established that an ever-improving future for individuals with extensive impairments is achievable, and in fact there may be adult programs evolving that will offer these parents options they are not now able to consider.

    Brosco and Feudtner next noted that risks of harm from this “heavy-handed” manipulation are unknown for this population, and this is an issue that begs for further amplification. Estrogen has hugely important actions. Even a cursory search of the literature shows that it influences things as wide ranging as immune system function and bone growth3 (e.g., Weitzmann and Pacifici, 2006), neuroprotection4 (e.g., Bryant, Sheldahl, Marriott, Shapiro and Dorsa, 2006), and hair follicle physiology5 (Ohnemus, Uenalan, Inzunza, Gustafsson and Paus, 2006). Further, estrogen is metabolized within the central nervous system throughout life, and the negative effects of its depressed bioavailability on aging are well documented. Thus, this artificial manipulation may have many unforeseen consequences, and while optimism has its place, there is ample reason to suspect that some of these consequences will be deleterious.

    Brosco and Feudtner discussed the precedent setting potential for growth attenuation that can lead to misuse, and that the intervention does not really address the core problems faced by families and our society regarding services and supports to affected individuals. These are additional excellent points with which we concur. However, they seemed to accept two critical assumptions that we do not. First, in discussing the potentially detrimental effects of growth attenuation, they argue that imposition of small stature might not be a concern if we truly accept the position of disability rights advocates that there is value in every human life and that the worth of a person goes beyond physical appearance. We certainly view people with disabilities as valued members of our society, but we fail to see anything in the disabilities rights movement to justify imposing constraints on anyone’s development. To argue this point grossly misrepresents the views of the disability community and turns logic on its head.

    Second, Brosco and Feudtner seemed to implicitly accept the idea that growth attenuation is in fact a type of therapy. We question this critical premise. Given that therapy is intended to address a condition of a patient, the target in this case would have to be the growth and maturation expected as a consequence of Ashley’s normal development. While there are many other treatments that target aspects of physical appearance, these seem qualitatively different from the present case. Although the closest parallel would be the past exposure of tall young women to high doses of estrogen to limit their height, we see this as a considerable stretch. It seems a bit desperate to refer to a practice that fell out of favor years ago (and would be viewed with extreme skepticism today) in defending these procedures, but even in those past cases the intervention was provided with the assent of the patients and to address specific desires.

    Clearly, assent was not obtained from this child, and there was no way to assess her willingness to have her body altered irreversibly. Brosco and Feudtner argued persuasively that growth attenuation has to be considered a procedure that has unknown risks and permanent consequences.

    Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their “most admirable of undertakings.” However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved.

    With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications. By extension, if weight ever becomes a difficulty due to age-associated loss of strength for the parents (rather than obesity of the child), then the rationale would suggest that bariatric surgery or severe restriction in caloric intake would be a form of therapy. If that proves insufficient, the goal of reducing the size of the child could be addressed by “amputation-therapy,” justified by the fact that the patient would never be ambulatory in any event.

    Should the child develop behaviors that increased the stresses of care-giving, then it should be perfectly acceptable to prescribe whatever dosage of psychoactive medication would be necessary to bring relief to the caregivers.

    It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy. This door is better left closed.

    AAIDD Board of Directors:

    Hank Bersani, Jr. PhD, President

    David A. Rotholz, PhD, President-Elect

    Steven M. Eidelman, Vice President

    Joanna L. Pierson, PhD, Secretary/Treasurer

    Valerie J. Bradley, Immediate Past President

    Sharon C. Gomez, Member-At-Large

    Susan M. Havercamp, PhD, Member-At-Large

    Wayne P. Silverman, PhD, Member-At-Large

    Mark H. Yeager, PhD, Member-At-Large

    Diane Morin, PhD, Canadian Member-At-Large

    Michael L. Wehmeyer, PhD, Member-At-Large

    Bernard J. Carabello, Presidential Advisor

    M. Doreen Croser, Executive Director


    1. Gunther D, Diekema, D. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Arch Pediatr Adolesc Med. 2006; 160: 1013–17.

    2. Brosco J, Feudtner C. Growth attenuation: A diminutive solution to a daunting problem. Arch Pediatr Adolesc Med. 2006; 160: 1077–78.

    3. Weitzmann, M., & Pacifici, R. Estrogen regulation of immune cell bone interactions. Ann N Y Acad Sci. 2006; 1068: 256-74.

    4. Bryant, D., Sheldahl, L., Marriott, L., Shapiro, R., & Dorsa, D. Multiple pathways transmit neuroprotective effects of gonadal steroids. Endocrine. 2006; 29: 199-207.

    5. Ohnemus, U., Uenalan, M., Inzunza, J., gustafsson, J., & Paus, R. The hair follicle as an estrogen target and source. Endocr Rev. 2006; 27: 677-706.

  9. #49
    Senior Member zillazangel's Avatar
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    May 2004
    North Carolina, USA
    What you posted is your group's response. There is no requirement to file with an IRB for off label use of anything. For example, the antidepressant Cymbalta can be prescribed by any physician for any reason even though the labeled / indicated claim is for major depression disorder. A doc can prescribe it for toe fungus he s/he wants to. If it is marketed and approved, you can do with it what you wish unless you are formally testing it for another specific purpose or are in the confines of an investigational study - of which this was not. It is a case report.

    Off label usage does not require an IRB approval. The usage in this case was 100% off label. That is irrelevant.

  10. #50
    Senior Member
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    Somewhere in the Rocky Mountains
    A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.
    Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
    Ashley’s smaller 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. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.

    This is a quote from the family's website. I think they are acting in their daughter's best interest and attempting to provide her a quality of life. If you look at the pictures, she is definately being treated as a part of the family and I think that is all that anyone can ask.
    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

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