Saving Charlie Gard

[Carolyn]

I have Ehlers Danlos Syndrome Hypermobile Type and Chiari Malformation too, my daughter also has the same type of EDS. I have loads of people on facebook with these same illnesses as at one time I did use a couple of groups for support so ended up meeting a lot of people with the same illness. There is this one woman who had a young son with EDS and about 2 years ago now he went into hospital, as far as I remember it was supposed to be for maybe a few weeks or so but he was in there for months and it was approaching christmas and his mother had set up a facebook page for him to be able to have a good christmas with him being stuck in there so long. I remember it well, it really did seem like he was possibly so bad he was dying or at least thats how it was potrayed, so christmas came and went and then moths and months went by and nobody heard a thing, many were wondering what was happened, some nosey of course some who were probably genuinly concerned, we all knew that there had been legal action taken against GOSH and of course there have been some other complaints made about GOSH aside from this one.

Then a few months ago this article appears in the paper about a child who has been sectioned and taken away from his parents and put into a psychiactric ward, no other information, the article was very pro the parents but it never covered any of the other stuff that was going on, then an article appeared on a website that covers news of this kind of thing and there was a court document about the child. There was mention of the time that he was first in the hospital around that christmas period where the mother came on and posted basically suggesting that they had got really bad news and that her child was dying, however this was not the case at all, the hospital wanted to discharge him and this is what she posted, then the mother and father were caught tampering with his tpn line which is I think for medication, theres a whole load of other stuff about this too, its interesting reading. Dont know whats going on now but the child in question was about to turn 16 shortly after he was taken to the psychiactric ward so it seems that they done this while they could to get him away from his parents. Its just a horrible situation really the only one I feel bad for is the child though, if his parents have been abusing him medically then its best for him to be away from them.

This link is the first article, there are further articles which are linked at the end of each one regarding this case. There are also a few posts on the Charlie Gard case too!! http://www.transparencyproject.org.uk/a-gifted-child-in-a-psychiatric-unit-should-we-be-worried-about-this-case/

 

[Devine]

i think it has to, in america. but i'm not sure how it works now, like for christian scientists, do they get to withhold medical care because it's religous reasons or can anyone?
i guess a judge would have to decide hmm not sure

I get what your saying.. in practice though it isn't always so easy. There have been numerous cases of parents withholding basic medical care from their children resulting in their unnecessary deaths. Or applying quack medicine again resulting in their unnecessary deaths.. does your opinion still stand in relation to cases like these?

 

[Lurker]

religous reasons or can anyone?

No, JJ pretty much showed that there is no separation between church and state, and that the state owns your child. If I misread it, I hope to be corrected.

 

[Devine]

http://www.foxnews.com/health/2017/03/03/fundamentalist-pastor-charged-in-toddlers-pneumonia-death.html

http://www.kare11.com/mb/news/crime/parents-charged-with-neglect-in-childs-death/381921413

https://www.masskids.org/index.php/religious-medical-neglect/cases-of-child-deaths

I'll find more tomorrow.

looks like the first was only charged because he was a mandatory reporter or whatever, the second kid had bruising and lesions so that's no lack of or poor med care that straight abuse. the third was what id asked you before WOW those are sad stories sounds like most of the parents got charged not all perhaps depends on the state they are in? wow just terrible

 

[justjess]

Depends on the state. And even in states like Pennsylvania you have to prove that they are long standing sincerely held religious beliefs.. and if the child dies you most likely will still be dragged into court.

Kids shouldn't be dying because of completely treatable things like pneumonia. I can't see a justification for that. If an adult wants to refuse medical care for themselves that's their own business but the child can't make that choice and has to rely on others to act in its own best interests.

That's why I say parents are guardians, not owners. When they aren't acting in their child's best interest someone needs to be able to intervene.

 

[Devine]

i thought the cancer one was especially interesting since it's not like emergent care

 

[justjess]

No, JJ pretty much showed that there is no separation between church and state, and that the state owns your child. If I misread it, I hope to be corrected.

How is that lack of separation? As an adult you are free to do whatever you want to yourself, when you cause a child's death with your religion it's another story. The child had no say.

@Devin those bruises were medically caused, not physical abuse.

 

[justjess]

@Devin the pastor (grandfather) was charged because of being mandated reporter but the parents were charged as well - for medical neglect.

 

[Devine]

oh sorry skimming. it looks like it says, the boy was throwing himself down the stairs and stuff?

 

[Devine]

i see the pastor
one now sorry

 

[justjess]

Plymouth Police officers were called to the Johnson home at 7:41 a.m. on March 30, 2015 on reports of a child not breathing. Once on the scene they located Seth on the floor of a bathroom with his father attempting CPR. Seth was pronounced dead on the scene shortly after 8 a.m. Evidence photos taken on the scene showed multiple bruises on the boy, and breaks in the skin on most of his body. There were two huge ulcers on the backs of his heels, which are consistent with someone who is not mobile.

An autopsy revealed Seth Johnson's death was caused by acute pancreatitis and possible sepsis. In addition to contusions and abrasions, the pathologist noted multiple blisters on the child's legs that were consistent with bullous impetigo. Seth was in the 5th percentile for age, and his Body Mass Index was in the 6th percentile for his age, reflecting a lack of physical development.

 

[Lurker]

Depends on the state. And even in states like Pennsylvania you have to prove that they are long standing sincerely held religious beliefs.. and if the child does you most likely will still be dragged into court.

Kids shouldn't be dying because of completely treatable things like pneumonia. I can't see a justification for that. If an adult wants to refuse medical care for themselves that's their own business but the child can't make that choice and has to rely on others to act in its own best interests.

That's why I say parents are guardians, not owners. When they aren't acting in their child's best interest someone needs to be able to intervene.

That's a reasonable thought, but how do we balance it with the terminal 16 yo that doesn't want treatment? The Drs will almost always say that treatment is best. The parents and child have already come to terms. It's the MIC that objects.

 

[Lurker]

How is that lack of separation? As an adult you are free to do whatever you want to yourself, when you cause a child's death with your religion it's another story. The child had no say.

@Devin those bruises were medically caused, not physical abuse.

I imagine that when vaccines are mandatory, you might see it differently.

 

[justjess]

Vaccines are already mandatory. There's ways around it and CPS isn't taking kids for it in any case.

16 year olds in most states are actually legally able to make their own medical decisions. In many states it's 14.. which becomes problematic with mental health and substance abuse treatment but other then that it's logical.

I helped a 15 year old foster kid refuse vaccination actually.. gardasil. Medical neglect laws only ever come into play with extreme cases like u see above.

 

[Lurker]

In many states it's 14.

I helped a 15 year old foster kid refuse vaccination actually.. gardasil.

Still not seeing the slippery slope?

 

[justjess]

Tbh no. The only reason I had to help the 15 year old is she was a ward of the state and apparantly my office never had a foster kid refuse a vaccine before so didn't know what the heck to do with it. Is there ever going to be a perfect place to draw a line in the sand? No clearly not but the basic principle behind it makes perfect sense. I wouldnt agree with it if i hadn't seen some godawful situations where it being necessary was clear myself, so I get the hesitation or wariness but the alternative is adults mistreating abusing and exploiting children and that's not acceptable to me.

 

[Lurker]

Tbh no. The only reason I had to help the 15 year old is she was a ward of the state and apparantly my office never had a foster kid refuse a vaccine before so didn't know what the heck to do with it. Is there ever going to be a perfect place to draw a line in the sand? No clearly not but the basic principle behind it makes perfect sense. I wouldnt agree with it if i hadn't seen some godawful situations where it being necessary was clear myself, so I get the hesitation or wariness but the alternative is adults mistreating abusing and exploiting children and that's not acceptable to me.

I can support it for simple things like antibiotics or vitamin iv, but that sets the precedent for more invasive procedures. I'll err on the side of parental rights.

I recently came across an article about parents approving sex change for very young children with no intervention from the state. Albeit a cursory glance, I'll keep my eye on it.

And THIS might interest you.

 

[justjess]

What about that article should have interested me?

The interplay between the school and the police has alwayd been a major concern of mine. Thats really all that stood out.

 

[Lurker]

What about that article should have interested me?

The interplay between the school and the police has alwayd been a major concern of mine. Thats really all that stood out.

I thought 1 and 3 would be of interest.

 

[justjess]

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.