Morality & Ethics regarding the "Pillow Angel"

[Miulang]

Re: Morality & Ethics regarding the "Pillow Angel"

Remember this story about the doctor and family who used surgery to keep a mentally challenged girl small so she would be easier to care for?

This sad story in today's Seattle Times says the surgeon who was involved in the case committed suicide last week. I guess all the public scrutiny and bad press he got from outraged people finally got to him and he couldn't handle it anymore. Such a waste of a good, talented doctor.

Miulang

[SusieMisajon]

Re: Morality & Ethics regarding the "Pillow Angel"

I think they are trying their best to do the right thing in order to be able to care for their daughter themselves.

[Miulang]

Re: Morality & Ethics regarding the "Pillow Angel"

http://www.cnn.com/2007/HEALTH/05/08...ing/index.html

and the issue is rising again. The "pillow angel" surgery broke Washington State law because the hospital sterilized her (as a minor) without zealous advocacy on the patient's behalf and without a court order, which the law requires. The parents provided the hospital with an attorney's opinion letter that the procedure was permissible without court order and it seems the hospital didn't double check that.

This doesn't answer the underlying questions about whether the medical procedures were in the best interests of the child in this specific case or in other similar cases but I do believe a court review makes an effort to provide some protection to people who are disabled (and especially who are disabled to an extent that they cannot speak for themselves) that should not be overlooked.

But the State isn't taking any punitive action against Chiuldren's Hospital, and all the hospital is doing is saying it won't ever do it again without the proper papers. So I think it will still be left on a case-by-case basis. To me, this is very similar to the Schiavo case, where the law is getting in the middle of a very personal decision.

Miulang

[Adri]

Re: Morality & Ethics regarding the "Pillow Angel"

http://www.cnn.com/2007/HEALTH/05/08...ing/index.html

and the issue is rising again. The "pillow angel" surgery broke Washington State law because the hospital sterilized her (as a minor) without zealous advocacy on the patient's behalf and without a court order, which the law requires. The parents provided the hospital with an attorney's opinion letter that the procedure was permissible without court order and it seems the hospital didn't double check that.

This doesn't answer the underlying questions about whether the medical procedures were in the best interests of the child in this specific case or in other similar cases but I do believe a court review makes an effort to provide some protection to people who are disabled (and especially who are disabled to an extent that they cannot speak for themselves) that should not be overlooked.

[tutusue]

Re: Morality & Ethics regarding the "Pillow Angel"

...until you walk a mile in their shoes...

I'm the (blood) auntie to a special needs little guy; 8 next month. He has Angelman Syndrome. He's not a pillow angel but he is sufficiently challenged that he'll need 24/7 care for the rest of his life. He also cannot speak. He is still living at home but there will come a time when he's too large to handle. If my family makes the same decision as Ashley's family, I will support them. If they choose not to and, as a result, need to institutionalize him, I will support them.

About 35 years ago I had a friend who's young daughter was severely afflicted with tuberous sclerosis. Her mental capacity was about the same as my nephew...approx. 3 years old. She became too big for my friend to handle and, as a result, had to be institutionalized, where she remains to this day. I went thru that trying time with my friend and often visited her daughter with her. My friend was a devoted mother who agonized over giving up care of her child. If the 'Ashley Treatment' had been available at that time and my friend had opted for it, I would've supported her decision.

The decision that Ashley's parents made is strictly personal; a decision based on their unique set of circumstances. That they are currently having to deal with a plethora of publicity, so much of it negative, is a travesty. May they continue to make decisions they feel are right for their child and their family regardless of what the lay public expresses.

[Miulang]

Re: Morality & Ethics regarding the "Pillow Angel"

If you just read the newsstory, it does appear as though the parents were doing things to Ashley to make it more convenient for them.

However, if you go to the website that PZ cited and read everything there, you will understand why the parents and the surgeons made the decisions that they did.

With the possible exception of the proactive appendectomy that was done at the same time the hysterectomy was done, there doesn't really appear to be anything that wasn't done for the future well-being and comfort of Ashley.

Is it wrong to be proactive in the caring for a child who will never develop mentally beyond a 3 month old? Why do parents do genetic testing of their unborn children? If the child is found to be physically defective in some way, why do some parents choose to abort? Is it for the convenience of the child or the parents in that case? I think those parents would be way more selfish than Ashley's parents, who now face a lifetime of taking care of their "Pillow Angel". They do not advocate the Ashley Therapy for anyone other than their own daughter, because every case is different, but the child is seen by a doctor every three months, and thus far has been declared to be healthy and thriving.

Miulang

[pzarquon]

Re: Morality & Ethics regarding the "Pillow Angel"

I didn't read the article. Don't need to. The child should be taken away from them as well as ALL their parental rights.

Such certainty based on three sentences from an AP wire story.

The family has published a website with a more thorough explanation of the reasons and specific procedures. Of particular interest, besides the words direct from the parents in this widely-covered (and certainly sensationalized) story, are the references linked toward the bottom (you can read a few related medical journal articles in full), and the comments from other parents with severely disabled, adult children. They might give you a clearer picture of what kind of life this family was facing.

Suffice it to say, there's a lot more to process than will fit in a newspaper article.

Far more drastic decisions are made by parents facing such incredible challenges (some with far more adverse affects on the children), and I'm certain those decisions could easily be questioned or criticized by outsiders. I for one won't pass judgement based on a stream of headlines. People who've never wrestled with a disabled loved one are blessed, and I hope they pray for this family even if they feel compelled to condemn them.

Would I make the same decision? Probably not. Do I have grave concerns about this path? Certainly. But toward that end, at a level far above bloggers frothing at the mouth and TV pundits getting red in the face, I'm glad the case is being responsibly documented and studied by medical and ethics professionals. History may indeed judge them harshly, but I won't.

[Adri]

Re: Morality & Ethics regarding the "Pillow Angel"

I sympathize with the parents having to deal with raising a severely disabled child but I do not understand why it would be so much more difficult, if she grew to her expected 5'6", to include her in meal times, car rides, touching and snuggling. I really an surprised any doctor would administer this course of "treatment".

[1stwahine]

Re: Morality & Ethics regarding the "Pillow Angel"

Das SICK!!!! I didn't read the article. Don't need to.
The child should be taken away from them as well as ALL their parental rights.

Auntie Lynn

[Lei Liko]

Surgery on girl raises ethical questions

CHICAGO - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.
ADVERTISEMENT

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

This is one of the most effed up things I've ever heard. They had surgery performed on their child and pumped her full of hormones to make her more convenient for them. I can't believe it.