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Parents defend decision to keep disabled girl small
LA Times ^ | January 3, 2007 | Sam Howe Verhovek

Posted on 01/03/2007 1:14:08 PM PST by Lorianne

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To: VRWCmember
99.9% of all long term feeding tubes are PEGs either in the stomach or gut....

NG Tubes (like you see on hospital shows) are very, VERY short term and are risky for allowing feeding to 'back wash' into the lungs. Especially in the case of this girl who can't hold her head up....

Unless this girl has an archaic physician, she's got a peg.
121 posted on 01/04/2007 10:56:38 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: najida

najida, all manner of horrible things take place in the world today, and we become inured to them so that horror becomes more palatable. this is a groundbreaking case, it is being discussed as such in the media. it is going to come down to precisely how far parents can go with a child of their's. it is vital to our own humanity to discuss cases like this and fully ventilate the issue so that we don't start rubber stamping atrocities just because we are told not to judge what we have not experienced ourselves. your comments, from your experience, enrich the debate and should be welcomed, but so then should those that have grave concerns about a slippery slope where anything goes and ethics and morality be damned.


122 posted on 01/04/2007 10:59:11 AM PST by xsmommy
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To: Lorianne

God bless this family and their "pillow angel."


123 posted on 01/04/2007 11:01:12 AM PST by Antoninus ( Rudy McRomney as the GOP nominee = President Hillary. Why else do you think the media loves them?)
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To: georgiagirl_pam
This from a medical community that just recommended that ALL pregnant women be tested for Downs so that if it comes back positive they can be "encouraged" to terminate.

It's hard to take them seriously when they talk about "do no harm" in the LA Times, isn't it?

God bless you and your family.
124 posted on 01/04/2007 11:02:46 AM PST by Antoninus ( Rudy McRomney as the GOP nominee = President Hillary. Why else do you think the media loves them?)
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To: nmh
To highlight my disgust with these uncaring and uncompassionate "parents" I go back to my original suggestion ... since these cold parents have come this far ... feeding tube, wanting to keep her small for sonvenienve ... WHY stop THERE?

Amputate her limbs too!

Then the little angel couldn't possibly get "bed sores" there and she'd be even lighter and even smaller. If they didn't like the end result they could always keep the covers UP, so they wouldn't have to view what they did on a daily basis.

Who I really feel sorry for is this little girl subjected to such heinous parents who are so selfish they can't see straight. They are shocked that others see through this sham. They really don't get it. They're looking for support to ease their conscience?

As technology moves forward with ADULT stem cells, who is to say this couldn't help this little girl? Instead they dwarf her, ensuirng that she cannot live a normal life, on this earth. How nice. How "compassionate".

Nailed it. Keep fighting the good fight. These people are Nazis. Plain and simple.

125 posted on 01/04/2007 11:04:13 AM PST by theanonymouslurker
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To: najida

Some of the posts here are incomprehensible.


126 posted on 01/04/2007 11:07:38 AM PST by Hildy (Words are mere bubbles of water...but deeds are drops of gold.)
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To: linda_22003

I didn't remember the name but that is probably it.


127 posted on 01/04/2007 11:07:45 AM PST by higgmeister (In the Shadow of The Big Chicken, Cobb County, Georgia, USA!)
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To: xsmommy

Do you know what I see is the irony?

If, at the moment of this child's birth the parents institutionalized her (like the 100's that are in a sister facility of ours). No one here would be discussing it, and if we heard about it....we'd be sympathetic to the parents.

If, in taking her home, they chose to feed her by mouth or NG tube, and she developed aspiration pneumonia and died....which isn't the least bit uncommon. Still, no one here would be discussing it, and if we heard about it....we'd be sympathetic to the parents.

IF, in taking her home, inserting a PEG and caring for her until she developed a UTI, skin tear or septic decub and died....all common and understandable. No one here would be discussing it, and if we heard about it....we'd be sympathetic to the parents.

IF, in taking her home, inserting a PEG, caring for her until she was too large or difficult for them to provide at home care, they institutionalzed her....and later developed a UTI, skin tear or septic decub and died. No one here would be discussing it, and if we heard about it....we'd be sympathetic to the parents.

However, the very fact that out of all the above options, the parents have chosen the one with the best possible outcome, and folks are unsympathetic to the parents. Talk about up being down and down being up!!!

Discuss the other 4 scenarios first, which are the most common, most 'accepted' and in my opinion, the least humane....yet, because they've always been 'done' we aren't looking at them for what they are....


128 posted on 01/04/2007 11:08:18 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: Hildy

I'm rolling my eyes at the Oscar calliber over-emoting.


129 posted on 01/04/2007 11:10:39 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: theanonymouslurker

Oh get over yourself and stop the name calling....

And Sally Fields called,
she want's her Oscar back.


130 posted on 01/04/2007 11:14:16 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: najida

people are not unsympathetic to the parents at all, this sounds HORRIBLE, and yes it may be the best possible thing, but there absolutely HAS to be some concern for what is ethical and moral and there has to be SOME limit put on what parents can decide to do for the best welfare of the child etc. can you not see that this is DEBATABLE? your points are valid, but the sky is not the limit in a civilized society as far as what we can do to other human beings.


131 posted on 01/04/2007 11:17:24 AM PST by xsmommy
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To: xsmommy

What good does it do the child to keep her reproductive organs? Don't you believe the payoff (staying in a loving home, cared for by her family) is worth it?


132 posted on 01/04/2007 11:19:14 AM PST by Hildy (Words are mere bubbles of water...but deeds are drops of gold.)
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To: najida

step back from the medical aspect of this for just a minute and look at the big picture. WHAT are the limits? that is the concern here and it is a valid one in a civilized society. what i resent is the THOU SHALT NOT JUDGE flag being throw up constantly so as to innoculate things from debate. it is not wrong to question the outer boundaries of what is acceptable in civilized society. THAT is what is being done here and it is emotional on both sides.


133 posted on 01/04/2007 11:21:03 AM PST by xsmommy
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To: Hildy

STEP BACK and tell me what YOU see as the outer limits of what is acceptable to do. i am not here to discuss the nitty gritty of this case with you or anyone else. what i am doing is advocating DEBATE and stating that there is REASONABLENESS on both sides of it. i am saying shove the dang THOU SHALT NOT JUDGE flag, because i am tired of it being waved so as to cut off debate of issues that are in vital need of it.


134 posted on 01/04/2007 11:23:44 AM PST by xsmommy
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To: theanonymouslurker

You're clearly entitled to your opinion. The problem is that without knowledge of the situation, it may not be relevant. The fact that the article fails to mention any of my points supports my statement. These factors are implied and widely known among families with severely disabled children. Convenience could very well be the author's word which does not accurately portray the situation.

I'm not arguing the "convenience" angle, I'm dismissing it. I don't think people have the right to make these arbitrary decisions so give us all a break.

Once again, do you have any expertise other than being a "history major"?


135 posted on 01/04/2007 11:26:23 AM PST by mfreddy
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To: xsmommy

I agree,
but what isn't being debated is stuff that is being done all the time and no one sees as 'bad' anymore, even here.

Everything I listed prior to the first is the worst choice, yet I've never seen anyone get their knickers in a twist over it.....

Again, I'm seeing it through different eyes, and the horror is so misplaced.


136 posted on 01/04/2007 11:28:38 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: xsmommy

And who, in your estimation, should make the final decision? Hmm? A court? A priest? A Doctor? Who?


137 posted on 01/04/2007 11:30:13 AM PST by Hildy (Words are mere bubbles of water...but deeds are drops of gold.)
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To: najida

physically altering a child for whatever reason, to the extent that was done here, is noteworthy and is going to engender debate. institutionalization has been with us for eons, lamentable as it is. surgical alteration to this degree is the source of the conflict here and again, the issue is what are the LIMITS? there really IS a slippery slope and we are definitely on it somewhere.


138 posted on 01/04/2007 11:31:32 AM PST by xsmommy
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To: xsmommy

But this is so minor compared to so many other treatments, medications, procedures etc that are being done all the time....

Funny, no one has discussed the invasivenss of a inserting and maintaining a feeding tube, or long term catheterization, or a possible ostomy bag or common surgeries that are done to deal with contractures, or shunts for draining etc....

What the parents here are doing is extremely minor to common procedures that are done to maintain and care for the long term disabled.


139 posted on 01/04/2007 11:32:11 AM PST by najida (If it wasn't for fast food, I'd have no food at all.)
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To: All

I too am very shocked at this story, but am riding the fence as I am a parent and have to believe I would always do what I believe is best for my children.
I just HOPE AND PRAY TO GOD that these parents do as they say they will and continue to care for this little girl for as long as they live in the way they are telling everyone they intend.
When people have children they must anticipate that they may not be "normal", healthy children.
I do not agree with the treatment this little girl is receiving as a whole and don't people think these surgeries are hard on this child as well? Does that outweigh the fact that the parents SAY they will always be there for their little girl and carrying her around all the time and from place to place? There are people who get by and continue to take care of their adult children, including carrying them around who are disabled and also do amazing, exceptional things - anyone hear of Dick Hoyt?
Anytime, EVERY TIME that Ashley goes into surgery she risks death. She was given a full hysterectomy, are giving her HUGE doses of hormone therapy, I am not even sure what anti-breast growth therapy/surgery/treatment is...
I don't know what I would do, I am not in their shoes but it just seems wrong and I do hope God takes care of this little Angel. At least we can agree on that.

- georgiagirl_pam - you can not compare this at all to anyone else and what they are going through. That is why there is a debate - it's experimental at best. Your asking if anyone else takes any medication is comparing apples to bananas and irrelevant to the topic.


140 posted on 01/04/2007 11:32:50 AM PST by KTD
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