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 this—their 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 public—if 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.
Adrienne
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.
King
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 child—to render the child physically easier to care for—when 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
By Louise Kinross
You may have seen this story about parents who choose to medically halt the growth of their children with severe disabilities through surgery and hormone treatment. It's in this weekend's issue of the New York Times Magazine.
The argument for the treatment is that a child who remains child-sized 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 to avoid menstrual pain.
What struck me as odd in the article was that the ethicist from the children's hospital that published the first case in 2006, with a child known as "Ashley," notes that treatment is only recommended for children "with the lowest cognitive function."
This is echoed in the article by parents whose children have had the procedures. One says: "She's going to be a baby all her life in her brain."
The ethicist cautions that intellect can be hard to read in a child with severe disabilities who can't communicate: "...I do think you need a fair amount of certainty there," he says.
But what does low IQ mean for a child going through these procedures?
To clarify, halting growth for girls involves a hysterectomy and mastectomy, usually between the age of three and six. This is followed by about three years of estrogen treatment that speeds up bone age and triggers the early closing of the child's growth plates. "A careful monitoring of calories" is also required, the article notes. When begun at a young age, future height can be reduced by one to two feet, and weight by 100 pounds.
The implication seems to be that a child with the lowest intelligence will not experience the surgeries and hormone therapy in the same way a child with typical intelligence would.
And why would that be?
The implication seems to be that a child with low intelligence doesn't experience pain.
It reminds me of that time when the medical profession claimed that babies didn't feel pain (proved oh so wrong, scientifically, since).
What I find troubling in this article is the suggestion that intelligence is the barometer by which medically stunting height and weight through surgery and medication is judged ethical.
Does this mean that if a person has normal intelligence, then suffers a severe brain injury that requires 24-7 care, it's ethical to surgically alter their body to make it lighter for caregivers to lift?
Does low intelligence or brain injury make a person less likely to feel surgical pain?
I didn't know the answer, but I found the assumption troubling.
So I asked two of our staff at Holland Bloorview.
Peter Rumney is physician director of rehabilitation and complex continuing care at Holland Bloorview and an international expert in acquired brain injury in children.
"Not usually, no," was his answer.
"Absolutely not," is how Nick Joachimedes answered the question.
Nick, as a nurse educator at Holland Bloorview, led research to address literature that showed pain was under-recognized and under-treated in children with disabilities. "How these children show their pain may be different," he says. "But they are certainly as susceptible [as] anyone else."
I don't, for a second, question the physical hardship of caring for a child who will grow to adult size while parents age. This is a massive issue. We know from research that parents of kids with physical disabilities are at much greater risk of all kinds of physical injuries and chronic health problems.
But to argue that altering a child's body with surgery and hormones to make care easier is justified because they don't experience pain is plain wrong.
By the way, the New York Times article notes that Ricky, the boy pictured in the magazine's photo above, received estrogen treatment for three years until his toes started to turn purple (thrombosis is a side effect). He also developed breast tissue. His doctor suggested his breast buds could be surgically removed for cosmetic reasons but his parents felt this was unnecessary.
What are your thoughts?
Photo by The New York Times
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