Monday, April 18, 2016

Mailbag: What you said about stunting a disabled child's growth

You voiced strong opinions on a BLOOM post about a New York Times Magazine story on parents who choose to medically halt the growth of their children with severe disabilities (photo above from The New York Times). 

The argument for the treatment, done through surgery and hormones, is that a child who remains tiny can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them sterilized to avoid menstrual pain. 

In the article, an ethicist noted the treatment was only for children with "the lowest cognitive function." I thought the implication was that children with the lowest intelligence wouldn't experience the pain, in the case of a girl, of a hysterectomy and mastectomy, in the same way other children would.

You corrected me and said that pain was not the issue. Instead, the treatment is thought by some to be warranted for children with low cognitive function because altering their size won't compromise or violate their sense of identity in the way it might a child with average intelligence.

Here are a few of your edited comments:

I feel a lot of sympathy for parents who can envision a time wherein their small child grows up to a 125 or 150 or 200 lb person. I can see that they would agonize over what they see as a diminished quality of life. And to the parents who choose thistheir ability to move their child IS of paramount importance, as indicated by the article.

I think in the ideal world there would be supports in place that parents can care for full-grown adult children at home
and in publicif they so choose. But that isn't what happens. And as such, I really can't judge these parents who decide that this is best for their child. These are just parents who are trying to do the best they can.


As you know I dedicated a whole blog to this issue. Like others have commented here, I did not read anything about pain being the issue. The issue is cognitive ability or disability and that it cannot be assessed in individuals who do not have the physiological ability to express their mental state. 

In any case, if a woman in a coma is sexually abused by, say, a hospital worker, is it still rape? Is it still a crime? Is it okay to provide minimal care to our elder population with dementia because they don't know what's going on anyway? That's the crux of the problem; supposedly these children don't know what is being done to them, so it's okay to do it. G.A. is the most appalling violation of human rights that I have ever heard of.


This issue raises many concerns [and relies] on several contestable premises.

First, the use of the child`s intellectual capacity as a criterion for justifying these interventions is quite perplexing. As long as a child has consciousness, he/she should be able to experience pain. Moreover, impaired cognitive function could in fact pose greater concerns rather than less, as it may compromise the child’s ability to understand the discomforts that he/she is experiencing; that the “treatment” is supposedly beneficial for him/her. 

Second, using these medical interventions to facilitate basic physical care of the child seems like a stretch of the child’s best interests standard. This seems to impose a disproportionate burden on the childto render the child physically easier to care forwhen household adaptations and assistive devices could be used instead. 

Finally, there seems to be an under-recognized breach of basic respect for the child’s dignity, by treating his/her body in simple mechanistic terms, using convenience as a rationale for bodily alteration.

Franco A. Carnevale, RN, PhD (Psych), PhD (Phil) 
Pediatric Ethicist, Nurse, Psychologist
McGill University