On January 23, I attended a symposium at University of Washington on the controversial “growth attenuation” treatment for children with “profound” developmental disabilities. The event was an update to the larger 2007 symposium which followed the controversy surrounding the case of Ashley, a six year old girl with severe physical and developmental disabilities, who went through a combination of hormonal treatment to stop (or attenuate) further growth, hysterectomy (which the hospital performed without a legally required judicial review), and double mastectomy (which physicians called “breast bud removal” because she was pre-pubertal).
Since the last symposium, the University and its Seattle Children’s Hospital gathered a Working Group made up of doctors, medical ethicists, legal scholars, disability theorists, and at least one parent of a child with developmental disability to explore whether or not growth attenuation should be offered in the future, and if so under what circumstances. While members of Working Group started out with divergent views on growth attenuation therapy, they were able to come to some moral compromises, according to University of Washington pediatrician and ethicist Benjamin Wilfond. Among other things, most Working Group members agreed that, regardless of how they may felt individually about growth attenuation, it was morally and ethically acceptable if parents of “profoundly” disabled children request it.
How “profound” does the child’s disability have to be? According to Wilfond and others, a candidate for growth attenuation must be 1) non-ambulatory (i.e. the child requires total care, including feeding and toilet), 2) non-communicative, and 3) the condition is presumed to be permanent. Conspicuously missing from the criteria is the level of intellectual development the child is capable of. Ashley was said to have the intellectual capacity of a typical 3-6 month old baby, and but it appears that the Working Group has already began going down the slippery slope to include children with broader range of disabilities. In fact, Wilfond estimates as many as one in 1,000 children could “benefit from” growth attenuation, or 4,000 children annually, which is a surprisingly large number. The ideal age for the treatment is said to be between four and six.
Hormonal growth attenuation therapy is not a new phenomenon: during 1950s, daughters of very tall parents were sometimes given hormones to keep them from growing beyond normal range because at the time tall women were considered unattractive and unmarriable (thankfully, the second wave of feminism changed that). Douglas Diekema of Seattle Children’s Hospital reported that since publishing Ashley’s case, he was contacted by a number of physicians elsewhere who also prescribed hormone treatment to attenuate the growth of severely disabled children to keep them small. But growth attenuation has never been routinely offered as an option in the mainstream of medicine, and its wide-scale adaptation may impact the lives of people with disabilities in ways that the Working Group members are not anticipating.
For example, one of the benefits of growth attenuation is said to be the fact it would make it easier for parents of profoundly disabled children to care for them and to involve them in family activities. Assuming that is the case, it is natural to assume also that it would reduce the social cost of providing care and support services to families with a profoundly disabled child. Proponents of growth attenuation downplay this cost-saving effect, but it is not hard to imagine that, once growth attenuation becomes a mainstream procedure, public policy could pressure parents to “consent” to attenuate their disabled children as the funding for providing support services decline. But University of Washington philosopher Sara Goering dismisses such concern, stating that she is not certain that growth attenuation would reduce overall cost of caring for persons with disabilities.
In order to prevent abuse of the procedure, Wilfond and others offered three-pronged approach: clear eligibility criteria, “robust” informed consent, and oversight. I discussed the eligibility criteria above, but I am not convinced that Working Group is even clear about what they are. It appears to me that doctors are trying to have it both ways: when arguing why growth attenuation is beneficial to the child, they talk as if the child is intelligent enough to understand the surrounding and enjoy being in the community; and yet, when others express concerns about the negative social impact of the treatment, doctors dismiss their concerns by suggesting that these children lack the capacity to feel harmed by it.
The “robust” informed consent procedure, University of Washington bioethicist Denise Dudzinski explained, would involve not just the full disclosure of benefits and risks associated with the treatment, but also a referral to other parents who chose or did not choose growth attenuation for their children. In addition, Dudzinski said an information sheet should be provided to the parents that explains disability rights activists’ complaints about the procedure, likening the issue to the controversial genital “reconstruction” surgeries for children born with intersex conditions, or disorders of sex development.
As for oversight, the Working Group seemed to prefer the internal ethics committee over judicial review by the court, because judges are uncomfortable ruling on such private matters anyway and doctors are uncomfortable taking orders from the judge. The key difference between the two is the presence of court-appointed guardian ad litem in a judicial review, who would be obligated to oppose the proposed intervention, rather than vaguely advocating for whatever he or she thinks might be in the best interest of the child. This adversarial proceeding would force the court to consider the best possible argument against the procedure before it makes the decision. During the discussion period, I suggested that the ethics committee might benefit from replicating such structure, but panelists seemed to think that children’s interests can be properly protected by having a diverse committee.
Wilfond in particular admitted that he had not thought disability studies had much to offer before the Working Group started, but had come to appreciate the role “disability studies perspective” played in shaping the consensus. But the problem is that the Working Group, like the ethics committee, is not diverse enough. While both groups include several medical and legal professionals whose lists of expertise cover disability studies, disability rights activists are not represented at all (while a parent without professional credentials is included). I also did not recognize any disability rights activists other than myself at this entire symposium either, because organizers made no effort to involve the people who are most concerned about the negative social impact of the procedure while paying lip service to the legitimacy of activists’ concerns and the value of “disability studies perspective.”
Toward the end of the symposium, several mothers of children with developmental disabilities spoke out, many of whom had valid points. One woman said that when her disabled daughter grew larger than 4 ft. her dad could no longer lift her on his shoulder and take her out to walks. Another woman, an immigrant, said she could not transport her grown child with developmental disability to visit her relatives back home. A couple of women expressed their understandable frustration at disability studies scholars who kept saying that more funding for services would solve their problems, while they wait many years with little help.
And even if resources were to magically appear tomorrow, it still won’t be enough: care providers and assistive technology can be helpful, but even in ideal circumstances they are not the same as being able to be alone with just family members, lifting the child with one’s own hands. Disability studies assumes that disadvantages faced by people with disabilities can and should be remedied by social change, but parents are suspicious of disability theory because they see a real weakness of this proposition. And they view growth attenuation is the solution. As one woman asked rhetorically, “now that you have the eligibility criteria and all, is this finally a reality, as opposed to just a philosophical exercise?”
Which is why I feel conflicted about the whole issue, and I am willing to accept that growth attenuation is not an absolute evil per se. But I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.
I do not have a perfect solution that can satisfy everyone, or even a good solution that balances everyone’s interests well, but I believe that we as activist need to re-assert ourselves back into this important discussion before growth attenuation becomes a routine procedure affecting thousands of children each year with little meaningful oversight or restrictions.
Emi Koyama (emigrl) is the director of Intersex Initiative, a Portland, Oregon national advocacy organization for people born with intersex conditions, or disorders of sex development. She is also a board member of Bridges to Independence, which provides community inclusion support and other services to adults with developmental disabilities.
A more detailed version of this report can be found on my personal blog, along with my report on the 2007 symposium.
Why does anyone think that estradiol that has a common side effect of WEIGHT GAIN and is used extensively in the livestock industry to produce Shorter but HEAVIER cattle will make children with sever or profound disabilities easier to lift? In the studies of growth attenuation of tall girls cited by the authors of the original Ashley treatment article, the girls who were treated did end up being an inch or two shorter than expected based on previous height and weight curves, but they also ended up being 15 or 20 pounds heavier than if they had not been treated based on those same curves.
In addition, the notion that these procedures could be carried out without judicial review is untenable, here is why. It is already well established that Judicial review is required to sterilize a child with intellectual disabilities, and the Seattle Children’s Hospital acknowledged that it acted illegally and agreed not to do it again in the Ashley case. So the question arises about whether they could do the estrogen treatments without the hysterectomy and breast surgery. The massive doses of estrogen used in the Ashley case (equivalent to giving a six-year-old child an entire months supply of birth control pills every day for a year or two) would expose the child to very high risk for uterine cancer. “Estrogens have been reported to increase the risk of endometrial cancer in postmenopausal women taking them for prolonged periods of time by a factor of 4.5 to 14 times; the risk tends to depend upon the duration of treatment and the dose of the Estrogen being taken.”
It also will lead to substantial breast enlargement, to these side effects of the treatment will make it difficult to use estrogen in such massive doses without the surgical procedures, and these surgical procedures will require judicial review.
What I don’t get, amongst other things, is how can they be seriously talking about taking a treatment whose sole instance involves highly questionable irregularities of pretty much all sorts in play here–medical, biological, bioethical, procedural–and making it a generally available procedure. It’s truly bizarre.
Parents themselves are in a vulnerable position, just as they were when they trusted medicine and state in consenting to have their low IQ children eugenically sterilized, or to have those children institutionalized “for their own good”. To have the doctors involved in the Ashley case exploiting that vulnerability to make a case for foisting this thoroughly untested and dubious set of procedures on a trusting public in the name of parental choice is kinda disgusting. Are there any medical professionals standing up and saying “Not in my name”? I’m curious.
The Seattle Children’s Hospital agreed with WPAS that there would be no groth-limiting medical interventions without court order. I have the excerpts from the WPAS investivative report and the hospital’s press release of May 8, 2007 in my blog entry below.
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As someone who married a woman with a profoundly disabled child I have a few thoughts.
My wife was in Seattle, knew Ashleys family and Dr. Gunther. She felt the procedure made sense and was a well thought out way to improve the quality of life of a child that her family loved and worried about her future. My wife met with Dr. Gunther and got a lot of information regarding the procedure. Please be careful about passing judgement on parents of these acutely disabled children unless you take the time to find out what their life looks like and what lengths they go to to care for their children. It takes a relentless devotion and selflessness most of us cannot imagine. I think anyone who spent the time with them would soon realize that these parents probably know their children better than anyone else and are the best suited to make decisions regarding their future. We should show them compassion and provide support.