Disabled Child's Parents Defend Growth-Retarding Therapy

[chera]

Parents of a severely cognitively and physically disabled girl have publicly defended their decision to retard her growth through the use of hormonal therapy and surgery, saying they were acting out of love and compassion.

The parents said they were thinking only of the best interests of the child, now nine years old. She has static encephalopathy, with marked global developmental deficits, and is reported to be non-ambulatory, with the cognitive abilities of a three-month-old child, and no hope for improvement.

A story about the child and her parents' decision to subject her to high-dose estrogen, a prophylactic hysterectomy, and breast tissue reduction surgery (to prevent familial breast cancer) was published in the Los Angles Times on Jan. 2. It sparked international headlines and reactions ranging from sympathy for the parents to outrage at what some see as "mutilation" in order to make the caregiver's lives more convenient.

The basic premise is that high-dose estrogen can inhibit growth and advance maturation of epiphyseal growth plates in order to keep the child's stature short.

"Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size," the physicians wrote in in the October issue of the Archives of Pediatrics & Adolescent Medicine.  "If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home."

For once, I have nothing to say.  The ethics of this are just too damn difficult.

[JFC]

I'm staying away from this one.

[crazychickencow]

Yeah, I'm gonna keep my nose out of this one because no matter what you say, someone's gonna say you're wrong. Not to mention I hate political/ethical debates...

[NAzu]

Must be hard for the parents   Retarded children demand a lot of care from the parents ( a lot more than 'normal' one's).

[RionZ]

Yea, I'm also feeling the same as the above posters on this...not much to say and yet there's plenty to say.

[Fracture]

I'll get the ball rolling.  Yes, there's a lot of gray area here and I may be over-simplifying things, but as long as the girl stands to benefit from the treatment, I say go for it.

The long-term welfare of the child is paramount, and it's hard for me to say that the parents have acted against her best interests.  Here's a person whom by all accounts isn't going to get better.  It's her disability that's depriving her of the opportunity to lead to a "normal" life, not the treatment.

"We have to remember that this is a child who is so severely cognitively disabled, who could never benefit from increased height because she never stands and will never be able to stand or sit up. The fact that they had to remove her uterus, that's something she could also never benefit from as she could never engage in sexual intercourse and never voluntarily become a parent."

And on the other side of the fence:

"No, more distressing is how this solution fails to situate the plight of these parents, struggling to care for their children, in the larger context of a society failure to provide adequate social support in this most admirable of undertakings."

Note that the complaint here is not "the child is being injured" or anything of the sort.  Instead it's a matter of society's "failure". Maybe that's true, I don't know.  But while society deals with that, let's not allow it to obscure the real issue which is determining what's best for this particular patient.  I think the parents - aware that their daughter's condition is never going to improve - have made a pragmatic decision.  If this was done solely for their own convenience, I'd be the first in line to throw stones.  Judging from the article though, it could make her life easier and even more enjoyable.

[Fuu]

I don't think the society faild at anything. As a society we decided to put life above anything else, and doctors do anything to keep the infants alive, even if they are empty body shells born without a brain.

We decided to keep them alive by medications, therapy and surgery, just for the sake of their bilogical functions. I can not say that what Ashleys parents did is wrong, and in many ways I agree with them, and their action is purly pragmatical and for the childs sake. But I cannot shake of the feeling, that Ashleys body is treated like an object, a thing, striped from its natural aspects of a biological being with its rights.

[ctz]

I'm against this. I think mutilating and preventing her natural growth takes away something of she as a humanbeing. She's like a pet to her parents now.

Yeah, I'm gonna keep my nose out of this one because no matter what you say, someone's gonna say you're wrong.

And that's bad because...?