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Author Topic: That baby case: Charlie Gard  (Read 157 times)

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Offline Nick

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That baby case: Charlie Gard
« on: July 13, 2017, 05:25:50 PM »
Sick baby
No treatment here
Docs say to let him die
Other doctors say bring him here:10%chance
Parents accept offer

Can someone explain why the docs here object and the courts back them?

As a parent, I would give mine a chance and just go.

I am baffled
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Offline Miss Demeanour

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Re: That baby case: Charlie Gard
« Reply #1 on: July 13, 2017, 05:58:41 PM »
But the parents can't jut disconnect him from the beep beep equipment and take him on a plane    they need the assistance of the state via the NHS to take him wherever they want him to go.
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Offline Nick

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Re: That baby case: Charlie Gard
« Reply #2 on: July 13, 2017, 06:01:18 PM »
I think they have an air ambulance with all the facilities.
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Online Steve

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Re: That baby case: Charlie Gard
« Reply #3 on: July 13, 2017, 06:20:03 PM »
The courts forgot the parents rights

Appalling case with no likely happy outcome but the parents are right to try everything if they're paying and the courts wrong to block them

Can those that want him to die now call an expert witness with 1st person experience of mitochondrial DNA depletion syndrome?  No, so their case is based on a mix of guesswork and a wish to see the child put out of their misery.
« Last Edit: July 13, 2017, 09:15:52 PM by Steve »
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Online Grumpmeister

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Re: That baby case: Charlie Gard
« Reply #4 on: July 16, 2017, 12:52:01 AM »
I've been wary about wading into this topic but I think the focus needs to be on the quality of life rather than anything else.

The important thing first is to understand what the condition actually is. Mitochondria are essentially the 'engine' of the cell, basically its main role is to extract energy from nutrients through respiration, and convert it into heat, or store it as adenosine triphosphate (ATP), the energy currency of cells. Mitochondria also have other roles such as chemical signaling, the regulation of cell growth, cell division, and cell death.

Mitochondrial Depletion Syndrome is caused by a mutation in the TK2 gene, which provides instructions in creating an enzyme that is involved in the production and maintenance of mitochondrial DNA (mtDNA). Specifically, this enzyme plays an important role in recycling nucleotides, (the 'building blocks' of mtDNA) so that errors in mtDNA sequencing can be repaired and new mtDNA molecules can be produced. Because of this mitochondrial levels in muscle cells of people with the condition are massively reduced, ranging from anywhere between 5% to 30% of normal. This leads to the patient being put on life support in most cases because there simply isn't enough APT being produced to power the heart to beat or the diaphragm to contract.

While there are treatments available now such as triggering mitochondrial biogenesis to increase the amount of mitochondria in a cell therefore increasing production of ATP the important question is how much of an improvement are you realistically looking at. If ,for example, the best case scenario ends up with him growing up still attached to life support in a state little better than locked in syndrome, being aware of your surroundings but barely able to move a finger a couple of millimeters every once in a while, is that what you would consider to be a life worth living?

Now I am the first to admit that I'm not a doctor or a specialist in the treatments for this condition but neither are the media outlets that have been reporting on this. Just saying there is a treatment with a 10% or 20% success rate gives the impression to a lot of people that it is either a complete cure when successful or will restore full quality of life with a constant regime. As much as people have been saying that the doctors involved in the case are heartless I can't help but wonder if this is a case of the doctors looking at the evidence and seeing just how little an improvement the treatment is likely to give if successful as opposed to just taking the easy route and wanting to see the child 'put out of their misery' as it were.

 

« Last Edit: July 16, 2017, 01:35:57 AM by Grumpmeister »
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Online Steve

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Re: That baby case: Charlie Gard
« Reply #5 on: July 16, 2017, 08:35:11 AM »
I've been wary about wading into this topic but I think the focus needs to be on the quality of life rather than anything else.

The important thing first is to understand what the condition actually is. Mitochondria are essentially the 'engine' of the cell, basically its main role is to extract energy from nutrients through respiration, and convert it into heat, or store it as adenosine triphosphate (ATP), the energy currency of cells. Mitochondria also have other roles such as chemical signaling, the regulation of cell growth, cell division, and cell death.

Mitochondrial Depletion Syndrome is caused by a mutation in the TK2 gene, which provides instructions in creating an enzyme that is involved in the production and maintenance of mitochondrial DNA (mtDNA). Specifically, this enzyme plays an important role in recycling nucleotides, (the 'building blocks' of mtDNA) so that errors in mtDNA sequencing can be repaired and new mtDNA molecules can be produced. Because of this mitochondrial levels in muscle cells of people with the condition are massively reduced, ranging from anywhere between 5% to 30% of normal. This leads to the patient being put on life support in most cases because there simply isn't enough APT being produced to power the heart to beat or the diaphragm to contract.

While there are treatments available now such as triggering mitochondrial biogenesis to increase the amount of mitochondria in a cell therefore increasing production of ATP the important question is how much of an improvement are you realistically looking at. If ,for example, the best case scenario ends up with him growing up still attached to life support in a state little better than locked in syndrome, being aware of your surroundings but barely able to move a finger a couple of millimeters every once in a while, is that what you would consider to be a life worth living?

Now I am the first to admit that I'm not a doctor or a specialist in the treatments for this condition but neither are the media outlets that have been reporting on this. Just saying there is a treatment with a 10% or 20% success rate gives the impression to a lot of people that it is either a complete cure when successful or will restore full quality of life with a constant regime. As much as people have been saying that the doctors involved in the case are heartless I can't help but wonder if this is a case of the doctors looking at the evidence and seeing just how little an improvement the treatment is likely to give if successful as opposed to just taking the easy route and wanting to see the child 'put out of their misery' as it were.

 

Thanks for that Meister, made it understandable

Well, whatever nevermind

Offline boogs

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Re: That baby case: Charlie Gard
« Reply #6 on: July 16, 2017, 09:53:11 AM »
Thanks Grumpy   Thumbs:

The fact is that as a parent you want to give your child every chance to live even if the quality of life is not 100% lets face it how many people have 100%  eeek:)

My heart goes out to this couple they want  to give Charlie every opportunity however slim to live I can as a parent understand that and will try anything.

TBH I suspect they will fail (I hope I am wrong) but they will know in their heart they have done everything within their power to help him.   

Experimental treatments need to take place or how do we move forward.   

I think they are a very brave couple to be challenging as they are the easiest thing would to have let the doctors switch the machine off and accept the inevitable  eeek:

Just my humble opinion   rubschin:
You only get one chance at this life so make the most of it .

Online Steve

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Re: That baby case: Charlie Gard
« Reply #7 on: July 16, 2017, 10:13:46 AM »
Thanks Grumpy   Thumbs:

The fact is that as a parent you want to give your child every chance to live even if the quality of life is not 100% lets face it how many people have 100%  eeek:)

My heart goes out to this couple they want  to give Charlie every opportunity however slim to live I can as a parent understand that and will try anything.

TBH I suspect they will fail (I hope I am wrong) but they will know in their heart they have done everything within their power to help him.   

Experimental treatments need to take place or how do we move forward.   

I think they are a very brave couple to be challenging as they are the easiest thing would to have let the doctors switch the machine off and accept the inevitable  eeek:

Just my humble opinion   rubschin:
:thumbsup:
Well, whatever nevermind

Online apc2010

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Re: That baby case: Charlie Gard
« Reply #8 on: July 16, 2017, 11:31:19 AM »
Thanks Grumpy   Thumbs:

The fact is that as a parent you want to give your child every chance to live even if the quality of life is not 100% lets face it how many people have 100%  eeek:)

My heart goes out to this couple they want  to give Charlie every opportunity however slim to live I can as a parent understand that and will try anything.

TBH I suspect they will fail (I hope I am wrong) but they will know in their heart they have done everything within their power to help him.   

Experimental treatments need to take place or how do we move forward.   

I think they are a very brave couple to be challenging as they are the easiest thing would to have let the doctors switch the machine off and accept the inevitable  eeek:

Just my humble opinion   rubschin:

 Thumbs: Thumbs: