Nine year old Ashley has had an hysterectomy, her breast buds have been removed to prevent them from growing into their womanly size, she has been treated with massive doses of estrogen to prevent normal growth spurt – all medical procedures performed at the behest of her parents. They want Ashley to remain petite – no more than 4′-5" tall and weighing around 75lbs. What kind of monster parents are these?
Actually, very loving parents. Ashley suffers from "static encephalopathy," a congenital condition that prevents her from walking, talking, holding her head up, rolling over or sitting up. She is called the "Pillow Angel" by her family. They put her on a pillow and there she remains. She will be dependent on others for her physical care for the rest of her life. Ashley’s parents want to dispense that care themselves and wish to involve her in all activities, including family trips. They have resorted to the medical method of "growth attenuation," to make it easier for the care givers, including her siblings, to administer to her physical needs which involve lifting Ashley.
This has given rise to a heated ethical debate. Do parents, even loving and caring ones, have the right to such "eugenics" even if it means an easier life for the child and the family members? The parents insist that it is a humane decision about which they had few compunctions. Declining interviews, Ashley’s father said by phone:
"I cannot explain something this complicated in an interview," But, he added: "People think it must have been a horribly difficult decision" to have the treatment performed. "It really wasn’t."
SEATTLE — This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old girl who has static encephalopathy — a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over, or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel," since she stays right where they place her, usually on a pillow.
Her parents say they feared that their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing. And so they decided to keep her small.
In a highly unusual case that is stirring deep ethical debate in the medical community and elsewhere, doctors at Seattle Children’s Hospital and the parents involved are describing how Ashley has received treatment over the past few years designed to stunt her growth radically.
The treatment, known as "growth attenuation," is expected to keep Ashley’s height at about 4-foot-5, and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would have attained roughly average height and weight for a woman — 5-6 and about 125 pounds.
The radical solution has drawn plenty of criticism and even outrage from some doctors and caregivers, who say it is a fundamental violation of a person’s dignity to impose such impairment of their growth. Some say it’s also a violation of the medical oath: First Do No Harm.
But Ashley’s parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can still carry her.
As a result, they say in a written account posted earlier this week on the Web, "we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks and bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long."
The girl’s treatment has involved a hysterectomy, surgery to remove her breast buds, and subsequent high doses of estrogen.
High-dose estrogen was used occasionally in the 1950s and 1960s, mostly on teenage girls whose parents were concerned about the social stigma of being too tall. The drugs could stop a 5-9 girl from becoming, say, 6 feet tall. As that stigma has gone out of fashion, so has the treatment, medical ethicists say.
But Ashley’s case involves an entirely separate ethical realm, that of whether a severely disabled person’s life might be improved by having his or her growth impaired.
Publication of the case in a national pediatric journal in October set off criticism of the parents’ decision — "eugenics," "Frankenstein-esque," "slippery slope" and "despicable" are some of the printable contributions to various Web sites on the topic.
Medical experts could not say for certain whether the case was unprecedented, but they did say the radical treatment to inhibit growth of a profoundly disabled person had never been discussed — and debated — in mainstream medical journals before.
"It’s simply the first reported case any of us know about," said Jeffrey Brosco, a pediatrician at the University of Miami who co-authored an editorial with Chris Feudtner criticizing the treatment in the Archives of Pediatrics & Adolescent Medicine’s October issue.
"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties."
Accidental Blogger 
14 responses to “The Bonsai Girl”
Ashley’s parents’ relationship to her may be loving and personal, but their willingness to see someone who is dependent as an object and a “noble savage” (or “pillow angel”) rather than a complicated subject is as old as time, and goes well beyond the realm of people with disabilities. So is the related inclination to desexualize people who are dependent, people with “queer” bodies or minds.
What is so terrible about a woman with an adult body and adult sexual impulses and the mind of a child? The size issue strikes me as a red herring. If Ashley were to grow to need to learn a safe way to satisfy sexual impulses, but her ability to consent remained unclear, why not, for example, teach her to masturbate? And why would disfiguring her body to keep it prepubescent (in a practice that reminds me of female genital mutilation) keep her safe from predators, when it has not done so for generations of children?
What do we know about the long-term medical impact of such drastic treatment? What kind of doctor interprets “do no harm” as a call to intervene to prevent normal development?
Since I represent people with developmental disabilities, this story has, not surprisingly, received a fair amount of attention in my professional circle. Nothing in my own reactions is as eloquent as these thoughts on the subject by a director at an agency that provides services to people with developmental disabilities:
“After hearing about this case, I read the dad’s recent blog posting (http://ashleytreatment.spaces.live.com/)…I am having a hard time not weeping over this story.”
“It’s clear that while family convenience may arguably not have been the original motivation for this crime (i.e. the parents may have actually convinced themselves that it was in their daughter’s best interest) the result is that she is now even more disabled, since her growth has been purposefully stunted, she’s had a hysterectomy at the age of 9, and her “early breast buds” have been removed. He notes parenthetically that her appendix was also removed because “there is a 5% chance” of her developing appendicitis sometime during her life. Why not remove her teeth so she’s spared the pain and trauma of dental work later on? If disability is truly in the eye of the beholder, this poor kid has even greater obstacles to overcome than she otherwise would.”
“Dad continues at some length about the benefits of limiting Ashley’s growth: (1) family can continue to lift and hold her, (2) it will be easier for her to participate in family gatherings, (3) she can continue to be bathed in a standard bathtub (?), (4) she’s at the weight limit for her stroller, and (5) will be less prone to illnesses such as bed sores, pneumonia, and bladder infections. He goes on to state that she will be spared the pain and trauma of menstruation, as well as the possibility of pregnancy and of uterine cancer. He also asserts that Ashley will not need to developed breasts “since she will not breast feed and their presence “would only be a source of discomfort” to her. The added benefit is that she will not have to worry about breast cancer, fibrocystic growths, and or becoming “sexualized” toward her caregiver, “especially when they are touched while she is being moved or handled…””
“Clearly the parents see their daughter’s quality of life defined only in terms of her current relationship with them. They don’t see her as an independent human being who may in the future have her own concept of what her life should be. She is essentially a Barbie Doll to them. With a Barbie, one doesn’t have to worry about treatment, education, maximizing potential…she’s a doll for life.”
“Words cannot express my outrage that these people have robbed their daughter of both her womanhood and her dignity for reasons that have more to do with them than with her. I hope the general public will keep in mind that parents regularly injure, maim, and even kill their children in the deluded belief that they are doing so out of love. While there may not be much that the legal system can do in this case, I hope that state legislatures and medical societies will consider measures to punish doctors who participate in such travesties in the future.”
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It is a disturbing story. The question to ask Ashley’s parents is the following:
“What if Ashley hadn’t been born with such paralysing congenital conditions? What if she was a “normal” young woman with breasts, uterus and a 5 foot six, 130lb body? And she got into an accident which resulted in a condition that required similar care? What would they have done then? They could remove her uterus but that’s about it. They couldn’t have miniaturized her. She would have needed constant care, including lifting and everyone would have had to do the best under the circumstances.
I would give the benefit of the doubt to the parents that all this really was about Ashley’s size and not about her sexuality. Although parents have been known to do take drastic steps even about that. Joe and Rose Kennedy had a daughter Rosemary,(John, Robert and Edward’s sister) who was mildly retarded. When she reached puberty, she started showing aggressive behavior and a natural interest in the opposite sex which alarmed Papa Kennedy who had political ambitions for his boys. He was so afraid that the young woman might get herself in “trouble” and compromise her brothers’ chances to attain high political office, he decided to have her lobotomized and she spent the rest of her life in a nursing home. Needless to say, Joe K. did nothing to curtail his own or his rambunctious sons’ libidinous instincts.
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A quote from one of many comments left on the parents’ blog:
“My girls function at a 3-5 year old and 9-12 month old level. Periods are a nightmare. My older daughter cries and cries and tells us she is dying. The blood terrifies her. My younger daughter does not understand the blood, but we put her in an adult diaper and when she is one of those, she loses all of her previous toilet training. Depo Provera shots do help, but there is still break through bleeding once in awhile.
Then there is the size problem. I am a small woman. My daughers are both small statured, but one outweighs me by more than 50 pounds. I can get some limited cooperation from the older one, the younger one has to be completely taken care of in every way, feeding, toileting, bathing, you get the picture.”
There you have it. Ashley’s parents have simply come up with a way that might perhaps ease the options for many parents dealing with severely disabled children. Teaching them to ‘deal with their sexuality’ or masturbate ‘for enjoyment’ may not be a viable option for children like these.
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“Ashley’s parents have simply come up with a way that might perhaps ease the options for many parents dealing with severely disabled children.”
I was taking the parents at their word that they were not doing this out of their own convenience, which your interpretation suggests.
I have known adults who function at both a 9-12 month old level and a 3-5 year old level who are not terrified by their menstruation, which they/their caregivers handle like any other bodily function. (I would even venture that fear or disgust at any of the body’s functions are attitudes that are learned; even those with a 3-5 year old intellectual age learn). As the mention of Depo Provera suggests, there are less invasive ways to help a woman with cognitive disabilities deal with menstruation, if it’s an issue for her.
As a practical matter, the size problem assumes that a person with a disability will always receive (or even want) her care only from her parents. There are both public and private resources for in home supportive services (better and worse, depending on the state). As Ruchira suggests, if you or I were in a car accident tomorrow, we would expect our care to be managed without performing invasive surgery to make us smaller. People with developmental disabilities are entitled to the same right. Moreover, some adults with developmental disabilities (many in the Mild to Moderate range), much like some children and some dependent adults, show a clear preference not to be cared for on a 24 hour basis by family members. And not all families who would find it convenient to stunt and neuter their child are particularly loving.
Whether any of this expands the options for parents wholly begs what ought to be the central question: the interests of the person on whom medical treatment is proposed. Disabled youths are not just their parents’ children, they are people who become adults. Our right to an adulthood and the dignity and integrity of our bodies is not contingent on our abilities.
It would seem an abrogation of dignity to me to subject my cat to surgery and agressive hormone therapy to stunt her development, let alone to do so to a person. I would and did spay her, but then, she’s a cat, and I’m not a Peter Singer follower on these issues.
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The parents may have been less than honest in their assertion that they were not influenced by any thought of convenience when developing the Ashley treatment, but I wouldn’t go so far as to castigate their choice in the matter. When you walk in their shoes and deal with the daily issues of bathing, diapering, feeding and other 24-hour issues, even the assistance that can be bought by money and/or provided by the state does not begin to address the never-ending routine that they face. For a person with mild disabilities, yes, there is an issue of right to adulthood, dignity and integrity- so long as there is some level of cognition of those rights. For a child so disabled as to lack awareness of those rights, I see no conflict in easing the burden of the caregivers by providing such medical intervention. ( I think that would apply even , for example, in case of my being disabled severely in an accident/illness which affects function to a near vegetative state.)
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“even the assistance that can be bought by money and/or provided by the state does not begin to address the never-ending routine that they face”
It might. In California, she would almost certainly be entitled to 24 care and supervision under a combination of state entitlements and Medicaid waivers. If it doesn’t in IL, then I would view the family as sympathetic victims who did a terrible thing because of a lack of better options; instead of complacency or congratulation, I would expect agitation for better options.
“For a child so disabled as to lack awareness of those rights, I see no conflict in easing the burden of the caregivers by providing such medical intervention. ( I think that would apply even , for example, in case of my being disabled severely in an accident/illness which affects function to a near vegetative state.)”
If rights such as to bodily integrity were contingent on an awareness of them, babies and small children would have no rights, and those with better awareness would have more rights than those with less. Surely that presents a conflict. Rights are a buffer against utilitarian values such as “easing the burden,” not in service of them. Ashley is not, by any account, vegetative or near vegetative; her parents describe her as very engaged with her surroundings. People with even severe disabilities have shoes to walk in, too.
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Anna, have you ever taken 24-hour care of a 3-month old baby? Let me assure you that it’s exhausting,despite any support from partners. Now, consider that 3 month old baby ( with all the lovely smiles, coos, ability to recognize faces and respond with sounds and giggles of that age), now grown to a 25 year old body weighing about 110 lbs. Try taking care of such a person, day-in and day-out, even with some support from other paid caregivers or not- that’s what I mean when I said “Walk in their shoes”.
Since you mention babies and their rights not being abrogated by their still undeveloped cognition, what do you say to the practice of circumcision, which, though medically unnecessary, is still performed widely over the US on newborn males? Is this not a case of parents making decisions to do what they perceive as ‘enhancing’ the quality of life for their sons?
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Yes, I have taken 24 hour care of babies, though I do not have a child of my own. Have you ever spent time with adults with serious developmental disabilities? I assure you that, even when they require a great deal of support, they are often quite engaged and have strong personalities. Interacting with someone with an adult body makes it difficult not to recognize that person as another human adult, with the consideration of autonomy that entails.
“what do you say to the practice of circumcision, which, though medically unnecessary, which, though medically unnecessary, is still performed widely over the US on newborn males? Is this not a case of parents making decisions to do what they perceive as ‘enhancing’ the quality of life for their sons?”
Yes, I think circumcision is problematic. Male circumcision, however, while non-consensual and invasive, is at least far less invasive than the “Ashley treatment,” and has apparent health benefits (reduction of AIDS transmission and other venereal diseases), though that’s not the reason it’s traditionally been undertaken. Whether it should be considered actively health promoting (in Africa, government sponsored circumcision is being considered for this reason) and thus more akin to proper medical treatment (e.g. innoculation), or akin to maiming a non-consenting baby for the parents’ non-health promoting purposes is an open question in my mind.
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How is Ashley being harmed here? She won’t grow tall and she won’t grow breasts. There are at least arguable benefits to that (e.g. reduction in bedsores, improved future contact with her family — certainly as valid as the medical benefits to male circumcision).
It seems to me that the real objection here is to the violation of her autonomy rights. In this case isn’t that an abstract, rather than real, concern based largely on slippery slope worries? (As my language probably indicates, I’m generally unimpressed with arguments of that sort — assuming my characterization is accurate.)
Disabled youths are not just their parents’ children, they are people who become adults. Our right to an adulthood and the dignity and integrity of our bodies is not contingent on our abilities.
Doesn’t this beg the question, too, of what it means to be an adult? What personal dignity constitutes? I would contend that adulthood is far more an issue of one’s mental, rather than physical, state. It may also be difficult to say that a non-consensual invasion is necessarily a violation of one’s dignity/integrity.
Is Ashley going to miss the height she won’t have? The breasts she won’t grow? In the ordinary case of an invasive procedure performed on an infant, that infant presumably should grow to understand — and perhaps regret — her loss of choice. Is Ashley ever going to miss this choice, this right which she was denied?
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By a troubling coincidence, I’ve been spending this weekend working on a training I’m scheduled to give this Tuesday regarding judicial commitments applicable to people with developmental disabilities.
As information for the first slide in my powerpoint presentation, I chose to open with the following:
Liberty interests of people with mental disabilities:
“Persons with developmental disabilities have the same legal rights and responsibilities guaranteed all other individuals by the United States Constitution and laws and the Constitution and laws of the State of California.” Welf. & Inst. Code § 4502.
This is simply a “legislative reaffirmation” In re Hop 29 Cal.3d 82 at 89.
The equality of people with developmental disabilities seemed obvious to the California Supreme Court, and seemed so obvious to me that I wondered whether this was a point worth making. To the crowd to whom I’ll be making the presentation, it probably is. I sometimes forget how lucky I am to work and live in a place (and a household) in which the equal status as humans of people with even serious disabilities is taken for granted, and they are not seen simply as objects or burdens.
“real objection here is to the violation of her autonomy rights”
Unlike you, I am concerned about autonomy rights; one of the appeals to me of disability law has always been that it’s one of the last preserves of left libertarianism in opposition to the paternalism of large L Liberalism. Here, I probably would have characterized the concern as equal protection, though I don’t believe a strong legal claim exists.
“non-consensual invasion is necessarily a violation of one’s dignity/integrity.”
In the default, it is battery. The law has carved out exceptions to that default with significantly more caution and concern for individual rights than I’ve seen evidenced in these comments. I encourage you to take a health or mental health law class.
“Is Ashley ever going to miss this choice, this right which she was denied?”
Hey, why not harvest a kidney while we’re at it? I stated my medical concerns and skepticism regarding the comparative utility/necessity of the treatment above. Ditto why the inability to understand a right does not constitute waiver of it. The opposite, in fact, is true under the law.
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After initially weighing in on the matter of Ashley, I have heard from two readers via e-mail who did not want their comments to appear publicly. Those comments have given me pause although they have not fundamentally changed my position on the matter all that much. One of them cited personal experience with a relative in a similar condition on whom a hysterectomy was performed. Both pointed to the ease of “pontificating” on a matter we ourselves are not dealing with on a 24 hour, lifelong basis. The case for hysterectomy of a female is particularly interesting. It goes beyond “sexuality” (which in the case of a severely mentally disabled person, remains a dubious issue). In case of an accidental pregnancy, are the care givers free to choose abortion for the birth mother who is not in a position to make that decision? Or is that too considered interfering with her bodily integrity? If not, are they then required to take care of that child along with the mother or are they in a legal position to give up the child for adoption?
Anna, I doubt that Sujatha or Joe come from any less considerate and humane households than yours. I think the comments here bearing on both sides of the dilemma are well articulated and have validity. That is precisely why the issue has given rise to such a heated ethical debate. Also why the physicians involved have not painted Ashley’s parents as selfish and draconian. Perhaps their plight will indeed shed more light upon the needs of families requiring help and assistance with the care of the severely disabled persons.
My comment here is not to add anything further on the Ashley matter but rather to address the issue of neo-natal male circumcision that Sujatha brought up in this context. Although Anna maintains an open mind and sees putative medical value in the procedure, (just like Ashley’s parents do vis-a-vis breast or uterine cancer), it may come as a surprise to societies practising routine circumcision, how violent and unnecessary the procedure appears to those who don’t subscribe to it. Not very differently from how female circumcision is viewed by the west. A college friend of mine from Thailand, broke off her engagement to an Iranian student largely due to the disagreement she had with him regarding the circumcision of future male children.
Neo-natal circumcision (or below the age of consent) is practiced widely only in the US and in Jewish and Islamic societies – for cultural and religious reasons. This excludes all of Christian Europe, Latin America, non-Islamic Asia and Africa as also now, Canada – which is a lot of humanity. The so-called medical benefits of circumcision are very minor, nothing that could not be matched by the use of condoms and regular access to shower and soap. The reason for the recent recommendation for circumcision in Africa is precisely because it is feared that the men are not going to use condoms. Even then, the procedure is not an inoculation (as in eradication ) but rather a reduction in the rate of infection by HIV virus. Had it been inoculation, most HIV infected males in the US would not have contracted the disease. The exposed penis with its hardened tissue is less pervious to the virus and harbors fewer organisms.
The reason for circumcision is purely a religious /cultural matter and in the US, it is difficult to criticize the process. I know of Indian families who were (most of them twenty to thirty years ago) convinced (coerced?) into circumcising their new born boys on the flimsy ground that they would be embarrassed in the boy’s locker room in school. To me this amounts almost to medical malpractice. The newer immigrants have learned to firmly say “no.” I frankly see very little difference between the violation of bodily integrity in what Ashley’s parents did for their own “convenience” and circumcision to satisfy an ancient, deeply held faith or the “like father, like son” cultural concept that many seem to favor. Unlike Ashley, some of the boys in their adulthood may actually regret the inadvertent loss of their foreskin.
In north America, male circumcision which first became popular in the late 1920s and early ’30s is gradually coming under greater scrutiny. Canada’s state sponsored health care system no longer pays for non-therapeutic neo-natal circumcision and the rate of the procedure has fallen precipitously. In the US too some doctors and nurses are speaking out and the procedure has seen some decline in its popularity. I am not sure how much of that reduction is due to newer immigrants from Asia and Latin America refusing to have the procedure done on their boys. But change is slower to come here due to the deeply entrenched culture of circumcision. Leonard Glick’s excellent book Marked in Your Flesh is an eye opener on the matter of male circumcision – what it actually entails physically and how the practise spread among Americans whose religion does not require the procedure. I am not here to argue the theological justification for circumcision but its medical and social advantages, which are thin. Being like your father (parent) is not a good enough reason for such a radical medical procedure. Or else, we should also say “yes” to any other non-essential surgical, medical or designer engineering we see fit to have a child whom we are comfortable with or who matches the sofa in our living room.
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I, too, have personal experience regarding disabilities (as did the director I quoted; in fact, I know few people who work in the disability community who do not). It suggests to me, among other things, concrete reasons why parents and family members, well-meaning though they may be, should not be regarded as the final authority regarding the interests of their children. Ask yourself this: would you happily follow every dictate of your parents? Now add the complicated emotions of love, resentment (perhaps unrecognized), etc. that attend relationships within families in which one member has disabilities that require significant support. And family members certainly pontificate as good as they get.
My household is not more considerate or humane, but it shares my values regarding disability, which Sujatha and Joe affirmatively do not. My reaction was one of genuine surprise and relief at my good fortune, not triumph. Glad to be brought out of my bubble, though saddened that others don’t agree. So it goes.
I would find the circumcision situation the equivalent of the Ashley treatment if in the name of religion or tradition people neutered their sons, in addition to cutting off their foreskins. As to whether, in reality, men miss their foreskins, Slate conducted a survey last year that was, while not particularly scientific, is interesting nonetheless:
http://www.slate.com/id/2136062/
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It may be interesting, but it still doesn’t answer the question whether it is ethical to do it without a sound medical reason before the males have learnt to consent. If indeed it enhances their sexual pleasure and gives them health benefits, why not wait until they are grown up and leave it to them to choose?
My point really was that one can be strongly opposed to involuntary violation of bodily integrity in one atypical (and rather pathetic) case and dismiss another much more widely practised one that we are culturally trained to accept, so lightly. I wasn’t surprised at all that Glick’s book brought out so many medically / sexually beneficial stories favoring neo-natal circumcision. He after all, took on a sacred cow (ox) by speaking out against circumcision in America.
And just for the record, I am not in favor of Ashley’s parents’ decision to alter her so drastically. I am just being consistent in my stand about the bodily integrity of our children – disabled or not.
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For the record, I agreed with your (and Sujatha’s) ethical point about circumcision, and think it’s a practice well worth debating. Mark Glick’s book down on my looooooong reading list.
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