Saving Charlie Gard

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justjess said:
I think 1 and 3 are mostly just a matter of misunderstanding. This isnt helped by the fact that CPS can not release any details about cases at all - it violates HIPPA.

children may have been removed from parents with a low iq - has to be clinically mentally retarted btw - but their iq alone could not be the only factor. They wpild have to be able to show that it significantly impacted theit ability to parent their kid in some tangoble provable way.

Its similar with number 3.. the wording is very vague, to vague for my liking, but typically would be applied in situatuons where dad took 13 year old with him to cop heroin, or there is a meth lab in the family basement. No harm had to have actually occurred but there is clearly a substantial risk of harm occurring in these scenarios.

It should be reworded though, leaving it that vague could leave it vulnerable to exploitation.
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OK, we see things very differently.
 
TMT

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I don't think that's possible. One of the tests for brain death is response, or lack thereof, to painful stimuli.

No, sex is for consenting adults.



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No shit, but the point its we allow the state to take children from abusive parents, and this is child abuse just of a different form. If kids are property until they hit legal age then you can do whatever you'd like to them, but we have decided they aren't property.
 
Carolyn

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TMT said:
It's unfortunate they didn't see the truth sooner and prolonged his suffering, may it end quickly now.
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Its gonna always be hard to see the truth being in a situation like that. I dont think anybody could really know for sure how they themselves would feel unless they were in that situation. Poor kid though, cant see the parents being together after this, cant imagine how horrible it must be to go through all that, all they were trying to do was save their child although obviously sometimes theres just nothing you can do, but I think most people would keep going and never give up and some do defy the odds, just sadly not in this case.
 
TMT

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Carolyn said:
Its gonna always be hard to see the truth being in a situation like that. I dont think anybody could really know for sure how they themselves would feel unless they were in that situation. Poor kid though, cant see the parents being together after this, cant imagine how horrible it must be to go through all that, all they were trying to do was save their child although obviously sometimes theres just nothing you can do, but I think most people would keep going and never give up and some do defy the odds, just sadly not in this case.
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Most people should try and change their perceptions then, if I was told that my child is suffering and that there is no reasonable chance of recovery, I would hope that love would guide me to think about the kid more than myself and let it go.
 
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I would probably walk through the pits of hell to try and save my kid.. i never questioned the parents (i got it even if i disagreed with the decision from outside), it was the politicians using this case for their own benefit that infuriated me.
 
Carolyn

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rainerann

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Does anyone know what this experimental treatment was and how many times it has been attempted? My first thought was that if it is experimental treatment, it is controversial to test this on a 11-month-old. In theory, things like this could be prevented if there were parameters established for experimental treatments such as requiring a minimum age until the experimental treatment is successful at a certain percentage.

I sympathize with wanting to do anything for my child, but I don't want my child to be experimented on either especially if they are already suffering.
 
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Nucleotide treatment or something.

Was never tested on an exact case from what ive read. And then i read one child previously had been treated, so either way small sample size
 
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Carolyn

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As far as I remember reading it was experimental, had no known side effects but it was only experimental for his kind of genetic illness. I might be wrong but I think if your there was there in front of you and you thought there was a single chance that something might provide some help then you probably would try it as long as it wasnt going to be painful or cause more harm.

https://mitochondrialdiseasenews.com/2017/07/19/nucleoside-therapy-explained-why-doctors-debate-treating-charlie-gard/
 
rainerann

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@Carolyn
For me, I think it would depend on how long my child had already had to live in the hospital. That would be the deciding factor for me. Being hooked up in a hospital is no way to live and if my child had already been living in a hospital for a while, I don't know that I would want to extend that for an experimental treatment.

If it was a new diagnosis that just rapidly progressed, I might; but not for something that had already been long term.

Either way, I still think a guideline should be established for infants in regard to experimental treatments. I think there should be a minimum success rate for a child that age. Then, things like this could be avoided.
 
Carolyn

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I think it would depend on many factors, not sure about the guidlines thing, all treatments are experimental until they are tried and they had to be tried at some point. I just think there are too many things to be taken into consideration on an individual basis to really come up with one set of guidelines to fit all.

Obviously it must be hard to test some treatments, especially more aggressive ones and unless they are going to throw all ethics and morals out the window they are never going to be able to test a lot of things, not that I am suggesting things go back to how they were before when they did get away with testing on the Jews in concentration camps, prisoners, people in insane asylums, so we are restricted to animal testing which isnt ever going to get results that exactly match how they might affect a human.

One thing Ive learned the last 8 years since getting so sick myself is never say never until you are facing a decision you can never know. When I first had an inkling that I might have a brain disorder even knowing that the only treatment was brain surgery I really didnt think Id go through with it, even when I had spoken to the neurosurgeon and we had agreed I could have the surgery I still wasn't sure if I could go through with it and then I did and since it I have said that I dont think I would go through it a second time if it was something that I needed but in reality if it came to it and if it could help I would.

I just think no matter how sure we think we are that we would react in a certain way to something, we can never really be 100% sure until we were there in that moment having to face that ourselves.
 
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