Posted on 01/03/2007 1:14:08 PM PST by Lorianne
SEATTLE — This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel" because she stays right where they place her, usually on a pillow.
Her parents say they feared that their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.
And so they decided to keep her small.
In a highly unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Seattle Children's Hospital and the parents involved are describing how Ashley has received treatment over the last few years designed to stunt her growth.
The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4 feet 5 and her weight at about 75 pounds for the rest of her life. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate, she would have grown into a woman of average height and weight — about 5 feet 6 and 125 pounds.
The parents' decision has drawn criticism and even outrage from some doctors and caregivers, who say such treatment is a violation of a person's dignity. Some say it's also a violation of the medical oath: First do no harm.
(Excerpt) Read more at latimes.com ...
I do not have specific knowledge of THIS case. I do have knowledge in this area. Long term feeding issues are not with feeding tubes in the mouth. I know--my son has one that goes into his intestine. It could be a G (stomach) or a GJ (intestine). It depends on whether or not the brain can tell the stomach to empty or not. If not it is placed in the intestine where the nutrition is absorbed.
there are limits in a civilized society even to what a parent can decide to do to/about his/her child. where would YOU place those limits? where would hitler place them? where would the Pope place them? that's what we are doing here, debating what limits should be acceptable.
Surgical alteration happens all the time in the totally disabled...
Ostomies, catheters, pegs, shunts, ligaments being cut for contractures, bones being removed after long term bed sores etc etc etc....
ALL is being done for care and yes, sometimes convenience.
insuring that a child will not grow beyond a certain point is minor? feeding tubes, shunts, ostomy bags are all done to maintain/preserve life. the procedures at issue herein are not lifesaving or life preserving. that is a major difference.
Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
Her wonderful family love her and want only the best for her...don't you think they're the ones who should make that decision? Since you didn't answer me before, I'll ask again, WHO SHOULD MAKE THAT DECISION, if not the family?
And please don't bring HITLER into his please. You demean yourself, this family and this forum.
do you believe there is a slippery slope? do you believe in limits? i have expressed NO opinion about the propriety or ethicalness of this particular family's situation. you have pronounced their decision the right one and seek to cut off those that might have other issues with the BIGGER PICTURE. can you separate out what is at issue here from this particular family's case?
oh the sacrosanct HITLER flag is being waved now? please. you know precisely what point i am making, no need to try to cloud the issue.
That's chickening out.
Let's just set the parameters, shall we? Does this case, in your estimation, fall inside or outside the limits?
If outside, why?
Not everything I listed was about preserving life,
in fact, most of them have to do with quality of care and quality of life.
In long term care, its' not like a hospital where you make life or death decisions.... it's more about "in this trainwreck of a homan body, what can be done to make it function better and with the greatest efficiency for staff?"
It's not like "House" where someone is about to die and you have this radical surgery to do to save them. In LTC, its simpler and sadder and not nearly as dramatic.
Again, I see this is such a simple and good thing compared to all the other things that are being done daily that I'm dumbfounded. Honestly....
But Mommy!
They called us Hitler First!!
(really,
now, I want a cookie please :) )
I think all cases should be taken individually. As najida said above, procedures are done everyday to help the families of disabled people. I don't see why this is a big deal. What will this girl lose by not growing? Absolutely nothing. What will she gain? Everything...interaction with her family, going places she's familiar with and yes, the convenience of not having all the pain and inconvenience that comes with menstruation...I think not allowing this to happen would be cruel.
Comparing loving parents who want the best for their child to Hitler is despicable. And the last refuge for someone without an argument.
listen, i will not be goaded into discussing this case, because it is not the point of my post. my point is that one side is attempting to shut down debate on this issue by saying WHO ARE WE TO JUDGE? concerns for ethics and morality are every bit as valid as defending the family's decision in this case. if we don't ever allow ethical concerns to be heard, will we then be put in the position of rubber stamping heinous decisions made by parents claiming to be doing the best for the child Because WHO ARE WE TO JUDGE? it is interesting to me that those who want to shut off the debate herein automatically assume that i am against what this family has done in this case. i can see both sides of this and it is my fervent belief that both sides should be HEARD on it, regardless if we have walked in their shoes or not.
and hildy, if you read my post, i in no way compared these parents to hitler, because I AM NOT DISCUSSING THIS CASE at all, i am discussing the need for setting limits of what is acceptable in a civilized society and my point, as you can clearly see, was to point out that the limits that HITLER might set would differ from limits that the POPE would set [as i am a Catholic, the Pope, to me, is the epitome of good, and hitler the epitome of evil and so i was merely positing both extremes of the spectrum] and they both might set different limits from what you or i might set. but it is ESSENTIAL that this be discussed and aired so that we insure that we don't slide towards the hitler end of the spectrum.
And what exactly are we doing, if not "discussing" it. Did you go to Ashley's website?
IMHO, Hitler would be the 'Send her to the institution' or 'Let her aspirate and die' camp.
Don't know about the Pope, but IMHO, the 'goodest' is what these parents are doing.....the 'Hitlerish' stuff is what we are NOT debating because it's out of site and out of mind.
IOW, the irony is we are debating the good as if it is bad and ignoring the bad because we don't HAVE to debate it.
on these threads there are always attempts to shut down those that raise a concern for the ethics/morality of a decision by saying if you haven't walked in their shoes you should not be heard. that is fallacious and that is my point.
Then your discussion is pretty much useless, isn't it? If you want to discuss ethics, but refuse to apply them to a specific example, why should we care what you have to say?
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