Dilemma of the Pillow Angel

[radfringe]

Dilemma of the Pillow Angel

I've been listening and reading various opinions regarding the Pillow Angel. The reactions have ranged from admiration to disgust to outrage at the parent's decision.

Before we take up sides and start firing letters off or contacting our legislators, I would like you to consider a few things.

First - how different is this situation than that of Terry Shaivo? In Terry's case we are talking about a woman who once had a quality of life and then had none. While the Pillow Angel has has no quality of life and will have no quality of life at all.

Terry was cared for in a facility as her parents were unable to meet her medical needs in a home environment. Currently, the Pillow Angel's needs are being met by her parents and at home.

Second - Ask yourself what you would do in the same situation. But, before that - do this:

1. Go work in a residential program for severe to profoundly mentally retarded adults who are also physically handicapped. Work a regular 40 hour week for 3 weeks, rotating between the 3 shifts.

2. Next go work for 3 week in an institution which the Pillow Angel's would most like be able to afford. Again work a week on each shift, on the ward with the most physically and mentally disabled patients.

After doing that - ask yourself if you could do it 24 hours a day for the rest of your life.

It's not an easy question to answer. I worked in state hospitals, residential programs, sheltered workshops with retarded and/or mentally ill and/or physically disabled adults who's abilities ranged from near normal to extremely and profoundly retarded. I wiped butts, changed menstrual pads, cleaned up diarrhea and vomit, showered, bathed, dressed, changed diapers and fed many people. I took them to the doctor, the dentist and to hospitals.

I did this for close to 20 years - and I can't tell you what I would do in the situation of the Pillow Angel. If you can, then you are very wise.

[Der Blaue Engel]

1. The pillow who with the what, now?

I must have missed this one. What the heck is a Pillow Angel?

[radfringe]

2. link to story

http://www.yorkshiretoday.co.uk/ViewArticle2.aspx?SectionID=105&ArticleID=1958338

[babylonsister]

4. Another:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/01/07/MNGVENCASN1.DTL&type=health

[REP]

3. Her Parents May Outlive Her; Incapcitated Women Are Raped in Nursing Homes

In all likelihood, she will outlive her parents, and have to live in a hursing home, where she would be at risk for sexual abuse. She has almost no cognitive abilities and is unable to know that she has had surgery or hormone treatments, but no doubt she can feel pain. I initially thought these parents might be on the sick side, but it really does seem as though they are thinking more of her than of themselves. Having such a profoundly brain-damaged child must be immensely difficult, and I have only sympathy for them.

[Warpy]

5. They can get raped at home, too

One of the most heartbreaking patients I ever cared for was a profoundly retarded woman of 33 who had not developed sufficiently to recognize faces nor did she have a social smile, meaning NO higher brain function.

Her daddy had pimped her out for years. She had produced three children, all retarded and all institutionalized when her case was discovered and her daddy put away where he belonged.

I can't see putting anyone through surgeries to keep them underdeveloped just so Mom and Dad can keep him/her at home. Chances are this girl has the capacity to feel pain, and that's where the ethical nightmare comes in.

Both she and her parents need the transition to a skilled nursing facility before they become incapacitated, not after, since as they grow older, the care will decline at home. They can still be fully involved with her care. I don't know of any nursing facility that turns families who want to help down, not after they've been shown the routine.

Home is not always the best place for these people, not when they're in danger, when they're neglected, or when it takes multiple painful surgeries to keep them there.

[pitohui]

8. won't the skilled nursing facility bankrupt the family?

who can afford that for someone expected to live 70 more years?

[Warpy]

11. Not in a country with NATIONAL HEALTH

Remember, this case is in the UK.

Here, they'd get their daughter declared a ward of the state.

[crispini]

14. This case is NOT in the UK

"We scheduled time with Dr. Daniel F. Gunther, Associate Professor of Pediatrics in Endocrinology at Seattle’s Children’s Hospital, and discussed our options. "

These are Americans, and, as such, do NOT have limitless access to health care. I feel sorry for them that they felt they had to do this. If they had national health, with access to home health care givers, maybe they would not have felt they had to do so.

[REP]

20. Sure; Anyone Can Be, But I Think This Child Is Protected At Her Home

The man you described should be beaten to death, and so should the men who raped his daughter. Rape is a despicable crime, and preying on those who have no hope of fighting back or getting away is especially sickening. Being beaten to death would be merciful; for them, I hope hell exists.

In the case of the girl with the revolting nickname, though - I do think she is well-cared for and protected, and while my first reaction to their proposed treatment is that it is too extreme, I do think it is well-meant. If it is the right thing, I really cannot say; I hope the doctors are right about her level of cognizence and she is unable to know the difference.

[xultar]

6. Anyone can get raped.

[REP]

19. Agreed; But She Can't Fight Back or File a Report

Believe me, my initial reaction was horror, but I came to see how these parents are trying to act in her best interests. Whether they are right or not - well, that's hard for me to say, and I have an opinion on almost everything. But it was thinking about those cases of comatose and severely disabled or retarded women being sexually abused in nursing homes made me realize that her parents had read those, too, and realized they wouldn't live forever, and if she looked like a little girl, maybe she would be safer. Taking care of such a profoundly disabled and retarded child must almost drive them to desperation in planning for her future, and right or wrong, I do think that for a change, the child was being considered.

[radfringe]

21. my partner was very upset by the story

she felt the parents we're selfish and more concerned with themselves than with the child

until I pointed out that if the parents were being selfish and more concerned with themselves then the kid would have been been in an institution from day one or shortly after

[baldguy]

7. They don't go far enough.

:sarcasm:

She'd be much easier to move her around if they cut off her arms & legs.

[radfringe]

18. walk a few feet in their shoes before deciding

[DemExpat]

22. I had thought of a movie I saw in the 90's : "Boxing Helena"

about a doctor removing the arms and legs of the woman he loved to keep her with him....
this Pillow Angel case reminded me of this.

DemEx

[kskiska]

9. How different is this situation than that of Terry Schiavo?

Schiavo's guardian (her husband) opted to pull the plug, after years of hopeless therapy and brain scans that indicated she was virtually brain dead.

This girl's parents, who are presumably her guardians, prefer to prolong the process, even there's no hope.

[pansypoo53219]

10. my uncle's kid has bad CP

they hit puberty early. extra sucky. but, her mother is a nurse, karl is a big guy, so they CAN move her. but i totally see the parents poiunt. they want to take care of her and NOT institutionalize. which is such a hard thing. i honor them for this. they are willing to take care of this burden.

not an easy path walking in their shoes.

[friendly_iconoclast]

12. Three things about this...

1. This is a USAian family, not the UK.

2. radfringe, you sound like a caring sort, I thank you for your work.

3. Unfortunately, people like radfringe are not common in institutions. A very
good friend of mine was incarcerated in one of these places, and was mistreated
personally as well as being a witness to physical and sexual abuse of others. And she is of above average intelligence.

She (and other people who were stuck in the same institution) report that
those with mental retardation or communicative disabilities were 'untermenschen'. As bad as their state-run 'school' was, other places
were straight out of Dante. see, for example:

http://imdb.com/title/tt0062374/

http://www.amazon.com/Raise-My-Eyes-Say-Yes/dp/0964461633

http://en.wikipedia.org/wiki/Walter_E._Fernald_State_School

or Google "Willowbrook" and "Geraldo Rivera" (yes, he did do some *real*
reporting back in the day.)

So, there really isn't a 'good' answer here. I thank God it's not my decision
to have to make

f_i

[newyawker99]

23. Hi friendly_iconoclast!!

Welcome to DU!! :toast:

[HuffleClaw]

13. you mean the 'bonsai child' ?

i'm not sure solomon could figure this one out. personally, i'm creeped out.

[Beelzebud]

26. Chia Kid!

[crispini]

15. They are making the best of a bad situation.

I read an op-ed on this family which said, basically, we should not be changing her to fit the health care system; we should be changing the health care system to fit HER needs. So, yes, if they had better access to home health care nurses who could lift her, clean her, and care for her, and access to durable medical equipment like electric wheelchairs, then maybe they would not feel they had to do this. But, they are stuck in the system that we have.

[Matariki]

16. That name they came up for their kid - "pillow angle"

just creeps the hell out of me. not to mention what they're doing to her.

[IdaBriggs]

17. The treatment proposed is to "create" Primary Amenorrhea.

It will result in severe medical problems, including but not limited to Low Bone Density, Osteoporosis, and a Weak Heart at a very young age. I have posted about this in the other thread, and feel no need to repeat myself here.

The correct physician to consult on this matter is a REPRODUCTIVE ENDOCRINOLOGIST. This is a person who specializes in hormone related issues. The condition the parents are attempting to create is a rare one (one in a million women are affected by it) and the fact the parents do not even know the "correct" term but keep calling it "Ashley's Treatment" is a cause for concern.

There are other ways of addressing some of the issues they are concerned about; I am not going to argue with you about the situation because this is a tragedy all of the way around. Unfortunately, in my opinion, the parents are choosing a dangerous, potentially deadly alternative. (Broken bones hurt all of the time, for example, while a weak heart kills, and the side effects of osteoporosis are well documented.)

[sammythecat]

24. I can't help but think of the abortion debate.

The "pro-life" crowd is often challenged by the "pro-choice" crowd to personally take care of the unwanted babies they insist be born, and, as far as I'm concerned, that's not an unreasonable challenge.

It seems that whatever decision the parents were to make was fully supported by the doctors, etc. All the people intimately involved seemed to agree it was the parents call to make, and whatever their decision, it would be supported. I feel for the parents. No one deserves such tragedy in their life, and no one deserves to be faced with such a "Solomon" like decision. There is no happy outcome, no matter what they do.

The only knowledge I have is what little I've read. It seems apparent to me that the parents love and care for their daughter and clearly want to do what is best. Based on that, and the fact that there is no hope this girl will ever have any kind of miracle recovery, I support their decision.

[Beelzebud]

25. That name "Pillow Angel" turns my stomach.

[SoCalDem]

27. Me too. It makes her sound like "toy" or a stuffed animal

She at least deserves the respect of calling her what she is. She's a severely handicapped child.. not a "pillow angel"..

why not a "chair ornament" or a "bed decoration"?

Her parents sound as if they have been terribly overwhelmed , and are not really accepting the enormity of it all. They will be caring for her their whole lives, with little recognition for their sacrifice, and that's got to hurt.. a lot.Maybe they are attaching the "heavenly" appellation to help themselves deal with it all

[sammythecat]

28. Maybe they are attaching the "heavenly" appellation to help themselves deal with it all

I imagine that's all it is, just a term of endearment.