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Sunday, Nov 8, 2009
Clearly, you've never spent much time with a 3-month-old. Yeah, they sleep a lot, but they also react to their surroundings, and have preferences as to stimuli. Just because they don't understand the content of it doesn't mean they don't formulate likes and dislikes. Don't believe me? Go play a variety of music for one. You'll definitely see reactions there.
What arrogance.
I suspect their wouldn't be all this liberal handwringing if the parents just aborted her in the womb.
would be a more accurate statement.
I think all of us who aren't in a substantially similar position to Ashley's family should probably reserve judgment and just thank our personal God that we've been spared that particular heartache. When I first heard this story, I, too, was a bit horrified. Then I followed a link to their website and came to the conclusion that they love their daughter and are trying their best under awful circumstances. So they call her their "Pillow Angel." Would you have selected the same pet name? Probably not, but so what? You may call your children names that I wouldn't call mine. Lucky for you such details about your family's life haven't been exposed to the world for ridicule. This family -- and Ashley -- deserve dignity and respect, like the rest of us. They are trying to do the best they can in an inconceivably difficult situation. Just as the doctors at the hospital that approved the "Ashley Treatment" were. In a perfect world, there would be no need for such a treatment.
Instead of throwing salt at this wounded family, try to understand what they are dealing with and where they are coming from. Then go kiss your "perfect" children goodnight, or feed your cat, or drink a beer. Your careless comments aren't interesting or helpful.
While I can completely understand the parents reasons for wanting to stop Ashley's physical development, caring for so severly disababled adult is difficult at best and if not done completely by family members can be dangerous for women in particular, there is a risk of sexual abuse by caretakers amongst other typs of abuse. I am wondering if the method by which this end was arrived was one of convenience. The radical surgery was only one way of arriving at this end. There are drug therapies that could achieve the same results, that being a combination of Sandostatin which inhibits the production of human growth hormone and depo Lupron which stops the production of secondary sex hormones ie estrogen and testosterone to name two common ones in both males and females. Both of these drugs are used in pediatric endocrinolgy to treat various hormonal problems. Were these types of therapies considered, was it an insurance issue, certainly drug therapy would be more costly in the long run, but not as radical and permenant as surgery.
As for the "Pillow Angel" discomfort so many mentioned I take it as a nickname given a child by loving parents, many kids have family nicknames that could be creepy to people outside the family, most are not quite so known to the public.
where none exists. no doubt, the treatment is radical...i think the mistake that most of us are making is that we are imagining it being performed on a normal healthy girl-child. Ashley is anything but that. with the kind of developmental disability she has, the treatment is only going to make a positive difference to Ashley's quality of life, as well as her parents.
It's rather absurd for Dr. Liptak to talk about Ashley's rights for normal development and sexual pleasure, when its pretty clear that Ashley's is not going to develop intellectually from her current state and that her sexual development (in terms of menses etc.) is only going to cause her pain and inconvenience.
since the treatment is so far-reaching in its impact, it was rightly referred to an ethics commitee and they have reached their conclusions. in the interest of Ashley's family, we should refrain from questioning their motives and actions, as they appear to be sincere and have the welfare of their child at heart.
...it's part of being a human woman, disabled or not. (If in fact she was able to have a period at all -- did they know that for sure?) Yeah, it might not be pleasant for those who are her caretakers, but its part of the full spectrum of life.
OK. If Ashley had gotten her period and they realized it was causing her undue pain and discomfort, interfering with her care, the hysterectomy alone I would have bought -- but removing breast buds? What kind of sick mutilation is that? Did they cut off her clitoris while they were at it?
As someone said previously, no medical ethics committee would have allowed a male disabled child to be castrated to make it more convenient for his caregivers. Never.
I feel terrible for everyone involved with this case. I understand that no one is doing a victory dance, but it sounds like the medical community needs to be reminded that being a woman is not a disease.
Ms. Johnson, if you don't think an ethics committee comprised of 18 professional and community members who took the time to hear out Ashley's parents, meet her, and spend at least 2 hours in discussions of her case not an organized effort, I can't imagine what would be. Did you even think about what you wrote?
As a physician, I think Ashley's parents should be commended for taking the necessary steps to safeguard their daughter against a number of dangers. Primarily the one of becoming too physically large for them to care for, and hence having to be cared for by a steady stream of strangers.The difficulties inherent in developing a fully sexually mature body in the setting of a hopelessly infantile mind has been avoided as well. Now, she need never experience sexual assault, pregnancy, menstrual cramps, and has no need of invasive, frightening screening tests. I applaud her caregivers' creativity and courage.
As for the "slippery slope" thinkers, better hope that if you or your loved ones are ever in even remotely similar situations the decision makers are more open-minded, rational, and logical.
This is just another case where people who have no standing to comment on a situation feel they have a right to chime in. I call it "Fristian medicine" and it should be stopped in its tracks.
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219 Democrats and one Republican join in favor of the legislation, which passed by a narrow margin
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Salon headlines in your mailbox
