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Letters
Thursday, March 13, 2008 12:00 AM

Why they stunted their daughter's growth

Parents of the "pillow angel," the severely disabled girl who underwent controversial surgeries to keep her small, give their first interview.

The letters thread is now closed.

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Saturday, March 15, 2008 03:01 PM

What AKA Smith said

FYI: An autistic or Down's Syndrome child with an IQ of 55 -- moderate mental retardation -- is far smarter than a chimp. They can talk, count, explain their feelings, emphathize, and do rudimentary work. Some of them hold down jobs and live in group homes without the supervision of parents.

Well put, AKA Smith!

I have a son with Down Syndrome. He's almost five. I have been having to hide the DVDs, which live in a zip-up case. He's perfectly capable of pulling a chair up to the shelf, getting the case, unzipping it, and trying out a few DVDs before he decides what he wants. And yes, he can turn on the TV, put in the DVD and start it if it's not an autostart. I would probably not object if he was better about putting rejected DVDs back in the case. Not unusual for a toddler but definitely not a 3-month-old either. He probably won't be a rocket scientist but I foresee him paying some taxes.

Saturday, March 15, 2008 11:33 AM

Seems an Awful Lot Like Abortion to me...

It's a medical procedure that the parents, who have already dealt with the psychic and emotional difficulty of dealing with such a situation, have decided is the right decision for their circumstance.

Just as most posters here would likely support the woman's decision to end a pregnancy, I feel compelled to support the parents' right to make this kind of difficult and very PERSONAL decision.

First and foremost, a bit of humility is in order before throwing out the hurtful personal judgements about these individuals.

The only people I would EVER trust with decisions of this sort of sensitive and lifelong decision are the child's parents. No external agency (whether it be government or concerned neighbors or snoopy internet readers) should get involved in cases like these.

Friday, March 14, 2008 06:59 PM

People aren't pets

I'm a nursing student. For my pediatrics rotation, I spent 6 weeks at a long-term care facility for children. The residents ranged from 3 to 44 years old, but all had a mental age of 12 months or less. The median mental age was 3 months.

The children I cared for were esentially babies in adult bodies. All had parents (or grandparents, in some cases) who loved them but could't take care of them. The kids got very good care, but not every family can, or wants to, put their kid in a home.

I'm torn about this. On one hand, caring for children with severe mental handicaps for 6 hours a day was hard enough. I can't imagine having to care for one 24/7 for years. On the other hand, people aren't pets. The term "pillow angel" sets my teeth on edge.

Friday, March 14, 2008 04:30 PM

no, Amity, my grandmother was not physically missing most of her brain...

But she was missing most of her day-to-day brain function.

At the end (and this drug on for a LOOOOONNG time; it was extremely hard on all involved), she

1. was strapped into a Geri-chair (basically, a cross between a wheelchair and a Barcalounger) with her head supported by special pillows.

2. completely incontinent.

3. unable to speak or communicate (BTW, she had been extremely hard-of-hearing/deaf since the age of 32, and died at the age of 82).

4. unable to feed herself or be fed anything other than liquified (not merely pureed, she drank her green beans through a straw) food.

5. had, according to all doctors and medical personal involved, no hope of recovering any of these bodily or brain functions. (She did not recover, no one in the family believed she would recover, and she died in July 2007.)

Dataguyx claimed that people could lose their humanity when they became like this. Since she was most definitely a sentient, intelligent human being BEFORE her downhill slide, I was wondering WHEN exactly she stopped being a human and started becoming a "person-shaped object."

Friday, March 14, 2008 01:11 PM

The problem

From my perspective, the problem with this procedure is not how it was applied to this particular child. The treatment seems ethically appropriate in the rare situation presented here -- absolute knowledge that the brain does not function and never will, and that no quality of life as we know it exists. If it is true that her brain functions on par with a three month old, then she can respond to human contact, voice, song, etc., but cannot do much else. Consequently, why would you not want a procedure that enables her parents to continue to care for her in a way that works for her. The problem is that all of us can perceive situation where parents might want to use the procedure where it would be horribly inappropriate, and once the procedure exists and is accepted, people will want to stretch the purposes for which it is used. The more appropriate debate seems to me to involve definition of the rare circumstances where this procedure would be appropriate, not application to this particular case. And, by the way, I think the procedure would have been even more appropriate if the child had been a boy.

Friday, March 14, 2008 01:08 PM

@Wonkers--

I have a hard time believing that you'd be quite so callous if this was your own child. Sure, logic kind of dictates that people in this situation just drain resources and "putting them out of their misery" may be a better option. But logic doesn't really apply when you're looking at your own child.

Friday, March 14, 2008 12:55 PM

Of Course We Can

When you add up the costs of treating all of the diseases, disabled, and ADDs, etc. it's astronomical. We cannot afford these costs.

Of course we can. We might just have to not spend quite as much on killing people.

Friday, March 14, 2008 10:43 AM

Why stop at castration, Splendide?

Why not cut off her arms and legs - SHe's not using them anyway....

And regarding "Pillow Angel"...THat's like calling a kid with a limp "Gimpy". It's not like "Pumpkin" - See the difference?

Friday, March 14, 2008 10:17 AM

Um

Gayle, for some men 200 pounds is a perfectly reasonable weight, not overfed at all--do you advocate starvation over medical stunting? Why? Starvation is painful and the medical treatments are not. And can you imagine dealing with a hungry adult-sized toddler? Toddlers are not reasonable when they're hungry--they're cranky and lash out without meaning any harm at all.

Canuckistan Bob, if Ashley had been a boy and the castration would have helped keep him smaller and lighter (no puberty to thicken the bones and expand the muscles) then I'd support it.

I understand the instinctive revulsion some posters feel, I felt it myself. But she is a baby, let her be a baby in the most comfortable way for her with her family.

And pillow angel seems a perfectly fine phrase to me, I call my little girl a pumpkin pie, perhaps some folks would find that creepy too. So what.

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