You may have read about nine-year old Ashley X, whose parents "froze her in time" at age 6 three years ago, and now have their blog where they discuss their decision. They took this poor invalid girl apart like some broken down car that you sell for spare parts, all so she shouldn't be a burden later in life. They sat and devised this plan with doctors, and had the hospital board vote whether or not to do this procedure. They kept it all a big secret until now, when they began to blog about it.
Here's what they did: From the British Guardian: "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size." For good measure they added the fact that they were concerned that men would take advantage of her later in life if she would grow to be full size to the reason that they decided to go ahead with this. How noble of them. These two professionals are seemingly too busy with their respective careers to be bothered with a child, which I can understand, but why bother at all?
M'Zol nit visen fun azelche Tzores, but this seems too much for me to understand, although I have b"h no idea what it's like to deal with a child like this. Is the need to have a child so great? This child has been this way since birth, and if she's such a burden why not give her to a family where she can at least be loved for who she is, and not just for how easy she is to care for. I cannot believe that parents who love a child so much that they can't bear to part with her and give her away to be cared for, can do this to a child. It must be somewhat painful for the child too although she has no way of expressing herself.
If I needed to guess, and based on an admittedly stereotypical assumption about them, I would say that these two are G-dless people. By that I mean that they have no religious sense of what's right and wrong, and decide fore themselves based solely on what popular opinion is, or even if it's not populr yet. They see this world not as a place that serves their wants and needs, not as a place to accomplish a mission. Whatever it takes for the woman to achieve that "supermom" image, even if it means to have a perpetual baby girl. That's not to say that the dad is not to blame for this too. The fact that this child is now referred to as a "pillow angel" leads me to believe that thay have a very warped sense of priorities.I've used common sense only in discussing this, no Torah authorities were consulted. I doubt there would be a universal Halachic answer to it anyway.
Hashem Yishmoreinu, af alle Son'im gezogt.
37 comments:
H,
I haven't yet taken a position here, but I fear that you either:
1. Listen to too much Talk-Radio
2. Are too fond of stereotypes.
Why can't you imagine that these people are trying to do what they think will be best for the child?
Why not take these statements at face value:
"Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them."
"Because of her small size, the parents say, Ashley will receive more care from people who will be able to carry her: “Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings ... instead of lying down in her bed staring at TV all day long.”
"By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia — and the removal of her uterus means that she will never have a menstrual cycle or risk developing uterine cancer."
In all seriousness, what makes your proposal so much more thoughfull?
And what kind of question is this:
"Is the need to have a child so great? "
Huh???
And do yo think that the hypothetical loving foster parent's are lining up outside their door? Not to mention that there is also the possiblity of really BAD foster parents...
I could imagine what you'll say once you do take a position!
Of course they say that they're doing it foor the child, do you think they'd admit to doing this for themselves?
Zezmir
by "having a child" I meant holding on to the child, and not give her away. Not to give birth and have children.
I don't know these folks, so I can't hypothesize about their personal limitations. But I can take what they say and evaluate it, and I simply don’t know what the right answer is here. As Jews we would consult Rabbonim, etc, and the slippery slope / precedent of this type of action is a real concern, but that doesn’t necessarily mean that conceptually these people are monsters.
HT,
You gotta be kidding. To hear you be so flippant about keeping one's children is truly shocking.
The Torah decides who's a monster, not popular opinion. If Euthanasia would be legal in the US, you'd still be a monster in the eyes of the Torah if you pulled the plug on a old, very sick man. They may think that they're being compassionate, but if this is called "playing G-d" then it's as monstrous as murder. Terry Schiavo's husband also thought he was being compassionate, sending her to a better place. Torah begs to differ. (I use Terry as a point of reference, I don't mean to compare Ashley to her.)
Is this the same as Euthanasia?
I don't necessarily think so.
Flippant? no.
If a couple can't care for the child then give it to someone who can. They obviously cannot. It's not your standard down-syndrome child r"l where the family decides to keep or not keep the child. Here the only option was to mutilate her, and for what?
I used euthanasia as an example.
Uh, dude, they didn't mutilate her. She was born mutilated.
I gotta agree with Zez.
"I used euthanasia as an example."
Thats my point. Now try a more fitting example.
she was born brain-damaged, not mutilated. Take a look at what they did to her.
It's fitting as far as saying that it too is seen as compassionate. Ashley's parents see what they did as compassionate too.
C'mon H, that is a reflex statement. Think about what you're saying. We treat people for conditions all the time, and not all treatments are a sponfull of sugar.
Remember that she has a terrible condition. They havent really made it any worse, have they? That's why I don't know what the right answer here is.
Did you even read what they did to her? Of course they've made her worse! How can all that not make it worse? How does it help her brain damage? What about leaving room for advancements in medicine, maybe she can be helped out later in life? They do procedures like they did to her to save a life. Hysterectomies are done IIRC to keep the Machloh from spreading to the rest of the body and Chas Vesholom killing the person, not to be convenient!
Remember that YOU are the one saying that it's for their convinience - they claim that it's to make her life better.
I'll give you "remeber" Ibber di Kup soon. These 2 decided this on their own, the doctors went along with it, and G-d knows what evil they have in mind. The child was fine till then. If you believe they did it for the child then I got some prime suspension bridge property for you. real cheap too.
I am not convinced that they have made her life worse. Prove to me exactly how they've done that and I'll see it your way.
And don't tell me that there could be a miracle cure any day now - I'm sure they have consulted experts and that possibility is VERY unlikely.
I see that this issue has you riled up - are they snags?
And, man, your definition of "fine" is soooooo different than mine.
I don't know them, but you sure sound like a Snag now. By fine I mean didn't need to have her body fiddled with then.
So, please, explain to me what real damage was done to her? How was her life negatively impacted?
Are all of our snags really liberal freieks?
hey zez & tzig stop zetzing or goring each other, please!
Tzibaleh
I KNOW you're smart enough to formulate an opinion on the matter, not just comment on the goring and zetzing. So please tell us what you think!
thanks for the flattery!
when i'll be done with the formulation, calculation & procrastination, i'll send you a telegram, as my dear bubbe o"h was fond of saying
What amazes me is that other than Zezmir none of the many people who comment here has anything to say on the matter! Can we only discuss politics?!
Tziggy:
"this seems too much for me to understand, although I have b"h no idea what it's like to deal with a child like this"
You should have left your comments at that. I also don't know what the answer to this one is, but these people are far from the demons that you paint them to be. They love their child, take good care of her, and the procedures performed on their daughter are in fact life enhancing rather than not. I'm sure some media rov type will answer this from atorah perpective, but it doesn't seem so simple and i could see the plausibility of permisibilty for these procedures.
Let me ask you some questions:
1) ovaries/related equipment and other non life sustaining organs/accessories are often taken out for precautionary measures..this is not farfeched for this kid. and she needs a period too? for what?
2) whats the problem with the hormones to limit growth? people give hormones to grow children who are not as tall as other 'normal' kids.
3) breast removal sounds horrible, but they made a small incision and cut out a pea's worth of body tissue. this too sounds like it would enhance the kid's life if she grew huge breasts; and if she ended being naturally flatchested, whats the crime now?
Different scenarios in life are cut and dry when you aren't living them. Sometimes actually living life helps temper unrealistic applications of Torah and values. I'm certainly not promoting relativism, but experience often enhances ones ability to understand/decifer a tough situation, although its not a prerequitsite.
Thank you N, I was feeling very lonely on this issue!
For the record, I applaud Hirshel for posting this and expressing his thoughts (even if I am not inclined to take his view). I think that by blogging about this people like H, me, and others can gain a deeper understanding of things that we haven't any expirience with...
Hirshel looked at from a political standpoint and within the context of leftist anti-morality culture that he percieved this as being a part of. If he would just post pareve opinions there wouldn't be much passion in the conversations (yea, yea, I don't know if that should be the goal either), he is actually a warm and sensative guy (even though you might not know it from the blog).
its funny. i saw tzig having this dialogue with a resoanable guy who was getting kind of disregarded and i felt that for his sake if for no one else's i should jump in. zezmir said "Tzig looking at this 'politically'". what is political about this scenario? These are not parents looking to exploit their child, parents who were media known radicals who had a healthy child and then altered the child to suit their whims and politics. These are people in a situation who made choices. The actual choices independant of popular politics can be debated intelligently. there is a lot to talk about. I am not bashing tzig, but if he really wanted to be an intellectual and stir up debate, he perhaps should have argued on the other spectrum, that of permissability of such operations for this child. On really tough issues with a big divide, despite ones personal positions, its possible to set forth good argument on either side so to speak...
How in the world did any ethics committee of any hospital except the Mengele (YMS) Medical Center ever approve such procedures? Mutilation of the mentally disabled was indeed one of the depravities of the Nazi YMS regime.
To what depths has society sunk that doctors would allow and perform procedures like this on a patient who cannot express her wishes? And who in the world would be sick enough to take advantage of her anyway? The hormone dosages alone will adversely affect her and shorten her lifespan by making her more susceptible to the "known disease" among other things. This is not just mutilation, it is time release murder!
The slippery slope down which this will lead us is too frightening to comprehend. I don't even want to think of the possiblilities of other procedures of this nature that can be performed on patients far less disabled than this unfortunate girl.
I don't see what your problem is with this. Who exactly do you think would take her, and give her the care that her parents can't? Who exactly was going to lift her up and take her around, once she was adult sized? Nobody. She'd be stuck in bed, in an institution, subject to the "loving care" of the sort of person whom these institutions are notorious for hiring, and develop bed sores and all the usual ailments that result from spending ones entire life in bed.
And what does she need ovaries for, if she is never going to be able to consent to use them? All they would do for her would be to put her at risk for cancer, and pregnancy in case of rape. So why shouldn't they be removed? The same goes for the breasts. She's never going to have children, or a partner, so why does she need breasts? Again, all they would do for her would be to put her at risk for cancer and rape.
The fallacy that just because Hashem made someone in a certain way, nothing may be changed, is disproved by the bris. Hashem made the world imperfect, and we are authorised and commanded to improve it in any way we see fit, so long as there is no specific prohibition.
I have a special contempt for those who oppose every improvement in the human condition with the claim that it would be "playing God". The same claims that are made today against genetic engineering were made in their day against all medicine, against lightning rods, against space exploration, and will always be made against any major project. It's rank apikorsus, to imagine that we are capable of "interfering with God's plan". If He doesn't want something to happen, it won't. But if it's possible, and He hasn't specifically forbidden it, then there can be no "interference", merely improvement on His unfinished work.
Allow me.
By Political I mean the idea that it's politically accepted to do absloutely anything for the sake of convenience, no matter what it takes. Obviously they love their child, but when do we say that there's a limit to what you can do to your child in the name of love?
The fact that this procedure was suggested by the parents, and NOT by the medical establishment, lead me to believe that it was done so as not to inconvenience them. The medical establishment would've long ago made it standard procedure for such children if it was even somewhat normal. It's not like this is some new treatment still not approved by the FDA, it's an operation that is done, just not in cases like this.
I OBVIOUSLY AM SOMEWHAT OUT OF MY LEAGUE HERE, b"h, so please forgive my ignorance in dealing with a case like this. I also did not mean to condemn the actual parents, but rather the mindset that brings one to think like that.
Milhouse
sounds like pretty warped logic to me. The little "Pillow Angel," (what the hell does THAT mean?) as her Mom calls her,needs to have every non-useful organ removed?
I will help you out tzig.
Hirshel Tzig said...
Allow me.
By Political I mean the idea that it's politically accepted to do absloutely anything
The parents did not do anything, they did specific things that are aurguably wise.
for the sake of convenience, no matter what it takes. Obviously they love their child, but when do we say that there's a limit to what you can do to your child in the name of love?
They did what they did because they are the child’s best advocate. That is their G-d given responsibility. Loving the child is not a primary motivator which leads to a good blog topic, what is love? Nevertheless they also seem to love their kid.
The fact that this procedure was suggested by the parents, and NOT by the medical establishment, leads me to believe that it was done so as not to inconvenience them.
As a parent with a child with extra medical needs, I can assure you that any patient’s best advocate is an interested/educated person with a vested interest, either the patient himself or a parent thereof. L’moshel, Just on the simple level of continuing care, ie a hospital stay (very non political) , I can tell you of so many inadvertent mistakes that me or my wife witnessed that nurses and doctors made that would have proven ch/v/sh lethal without our intervention. I can tell you a secret what most doctors know that I discussed with many prominent doctors, the hospital is a very dangerous place. ( I nevertheless advocate using hospital, for birth too!) Now this is the result of no politics of mal intent. It’s a matter of inefficiency between people. This same inherent inefficiency occurred during this breastleess kids care. Multiple doctors doing there individual jobs, kidney specialist, pulminologist, othro guy, etc. but no real team leader. The best team leader is very often the parents or educated patitent who have a vested interest and prompt the specialists to administer better care.
The medical establishment would've long ago made it standard procedure for such children if it was even somewhat normal.
Not true. The establishment is incapable to big to provide guidance in any form to such unique situations.
It's not like this is some new treatment still not approved by the FDA, it's an operation that is done, just not in cases like this.
I OBVIOUSLY AM SOMEWHAT OUT OF MY LEAGUE HERE,
Humilty is astep in the right direction
b"h, so please forgive my ignorance
I like you better when you’re humble…
in dealing with a case like this. I also did not mean to condemn the actual parents, but rather the mindset that brings one to think like that.
The parents didn’t necessarily have a mind set here. They dealt with a situation in a specific way. Hashem should help all of us so that we don’t need to enter the arena of dealing with difficult situations in spite of an ‘establishment’ or other perceived safety nets of reality. As one might say in California or Hawaii, Golus is tough (short contemplative pause) dude…
What are troubles? What is too much to bear? Why are we here anyway?
What is the difference between what was done and the surgical fad of tonsillectomies in the 1950's or of ear tubes lately? Why was her appendix removed?
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