Courts and parents at odds: Should dying British baby be brought to U.S. for help?

a reply to: DBCowboy

Actually the parents are by far the least likely to be logical in such a situation and could be doing it more for selfish reasons than for the child's best interest..

Their fear of losing a child might far out weigh the quality of life the child has/will have.

Sounds to me like the child is in constant pain and has little to no way to even communicate..

Would you want to live like that???

I wouldn't...

But if it was my child I doubt seriously I would care.. I would be so afraid of losing them that I would prob do what would be best for me.. keeping my kid alive.. rather than letting a kid with no prospects for a happy future pass away.



Also being fair this is one the reasons out healthcare system is so screwed.

Dr.s will spend 10,000$ on a treatment that only has a 40% chance of keeping you alinve for another 3 days.

You shouldn't throw good money after bad, and a consensus of dr.s should be making these decisions.


PS what exactly is the difference between the government making these decisions and the insurance company board room???

Both are buearicrats.. the politician at least has to be reelected the board is motivated ONLY by profit margins..

a reply to: szino9

What happens when the parents are not making the best decision for the child??

As I think this is a textbook example of??


Who is supposed to step in and do what's best??

The insurance company?? Hospital board of directors?? Or the government??

a reply to: ketsuko
Oops
Not a post to me.

a reply to: ketsuko

I'm not one to say.

a reply to: Kali74

I didn't know you were sick. Sorry.
Get better. That's an order.
I'd be all alone in the political threads so I'm selfishly ordering you to get better.

a reply to: JoshuaCox

I'm going to ask you the same question:

The decision over whether or not they could try the experimental therapy is now over and done with. Charlie will die.

Now the parents want to take him home for the first and only time to die there, but the doctors won't even allow this. Charlie's parents can't even take him home on palliative care to die.

What's the reason for that? What does it matter where he dies? Will pain meds work less well at home?

Sad as it may be this child needs a miracle. Going to America wont make the slightest bit of difference.

a reply to: JoshuaCox

Lets be honest and say it out loud : the parents are not making the best decision for the child. Of course, how could they? It is a burden for them either way they go. But someone else stepping in to make a decision for them??? Cant have that either!

There is no right solution in this.

originally posted by: Sillyolme
a reply to: ketsuko

I'm not one to say.

You're dodging the question.

Why can't Charlie die at home?

a reply to: ketsuko

Suffering is suffering, and the child I was describing had suffered for over 400 days. Every single day.

I was trying to avoid the religious part of the story, but yes, the parents were very religious. It was all about "God is in control". Every time the child survived another surgery, God was good. When the child was crying from the pain, God will take care of it. When the child finally died, God decided to take him home. I only wish God didn't wait through 13 months of an innocent's suffering before making that decision.

originally posted by: Sillyolme
a reply to: AkontaDarkpaw

Let's try to keep in mind that the courts are not making this decision. They act on the advice and knowledge of the medical staff attending this little one.

They don't just decide.

It's horrible.
No parent should ever have to suffer the loss of a child.

Then are they acting out of compassion?

I'm sure if i was in the parents' position i may find myself unwilling to face the inevitable.

a reply to: DBCowboy

It sickens me to think that a cold government can so casually dismiss a parents desires to do anything and everything for their child.

American insurance companies do this everyday! Trump should be moving American mountains helping American families that are struggling to get their own insurance companies to allow for "experimental drug therapies", if the drug study doctors approves the patient.

a reply to: kaylaluv

It's hard to draw that line between love and selfishness. I wouldn't even call it selfish. It's tragic . Our first instinct is to hold our little ones close and bear our teeth to any threats. To have to make that kind of decision entails a level of grief so deep it makes people do crazy things.

a reply to: kaylaluv

Oh, I see ... now you are blaming religion for it?

Again, it's not for you to say. When it becomes your kid, you can decide how to kill it and when the suffering is too much. Remember, every time your child gets ill, he or she will be suffering.

a reply to: windword

The parents raised the money, the hospitals, courts stepped in and denied them the chance to treat their child.

Are you okay with that?

originally posted by: DBCowboy
a reply to: windword

The parents raised the money, the hospitals, courts stepped in and denied them the chance to treat their child.

Are you okay with that?

Of course, they are. It's very easy to practice compassion on someone else's child, just like it's very easy to spend other people's money.

doesnt this case basically prove the State owns us and can dictate to us how we live or die? Some might say "well no, this was an underage child". I would say, " whats the difference?" The State is telling the parents they do not have the right to move their child to another facility in another country for experimental treatment. That sounds an awful lot like a government that has overstepped its authority. Do not do this and expect people to be passive. Do not do things like this to peoples children and expect them to be quiet and compliant. It is these kinds of things that create extremists and heres the messed up thing, its totally preventable.

some have said the child is brain dead, but then talk about the child suffering. Well, as far as i know a person thats brain dead cant feel much, so whatever suffering is going on cannot be proven by any scientific metric. So what we are really talking about here is voodoo science being practiced by the medical authorities and State officials. They cannot conclusively say whats going on inside that childs brain but are denying further treatment based on a lack of knowledge of a medical condition thats so rare only 16 people in the WHOLE WORLD have it. I would think that a credible scientific community would have wanted to use this situation to learn as much as possible but instead what weve seen is nothing but traditional treatments and total stonewalling of anything out of the box. This is the perfect example of whats wrong with the medical establishment.

I know a little bit about mitochondrial dysfunction, and i happen to know there are interventions using various chemicals and supplements that can aid the body in what it is not able to do for itself. We dont know whether or not they have tried any of these supplements or have consulted the rather few experts in that emerging field that could have something to say about the situation.

Additionally, the endocannabinoid system is plugged into and connected to EVERY single body system. My guess is that if this child has problems with mitochondria it probably has problems with other body systems as well. Providing support to the very system that deals with inflammation, the immune system, brain signals and a host of other regulatory processes involved in homeostasis should be STANDARD in cases as rare and complex as this one. The profound lack of creativity, imagination and will on the part of the medical community involved here is a travesty and failure of so called modern science.

a reply to: Sillyolme

Of course, it's a tragic situation and one I hope I never find myself in with my own child. Knowing how I am, I would of course want to keep my child alive, but seeing my child suffering would be worse. It would get to a point where I would want to alleviate the suffering, whatever that takes.

a reply to: ketsuko

Hey..let's not attack each other here.
Everyone agrees this is the worst possible scenario and no one thinks it's easy.

Every parent here feels this deeply.
Every person wanting a child feels this deeply.
Because every parent takes the exact same chance when they get pregnant and every parent knows this fear.
That's why everyone is so passionate about the subject.
It could easily be us.
Peace,
Karen

a reply to: windword

a perfect example is continuing the failed war on drugs policy and mentality that has withheld a natural medicine with few side effects from those who stand to benefit a great deal from it.

total hypocrisy.