Editor’s note: I am personally stunned by this concept but please leave your view in the comments. I bring you this article as news about what is happening to some disabled people.
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.”
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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