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Kathryn, I believe it doesn't matter how many millions Charlie's parents have raised. That does not give them the right to order the intensive care staff to do something medically unsound such as transfer the child to some place offering a quack cure. The parents can't take the child anywhere themselves - if they disconnect him from the life support machinery he will be dead before they are out of the hospital car park.
I don't know that the US doctor offering treatment is necessarily offering a quack cure. What it is, is an untried (not even in animal studies yet, as I understand it) treatment, that doesn't directly address Charlie's version of the mitochondrial depletion he's suffering from. It's a last-hope kind of treatment, throwing darts @ a board & hoping that something sticks.
If it were an experimental animal, & the testing met all the other requirements for such an experiment, I'd say go for it. But Charlie is not an animal, he's a human baby. I sympathize with the parents, the doctors & medical staff, the other patients @ the hospital, the lawyers & judges. (The staff @ Charlie's hospital is being harassed & receiving death threats, & patients' families are being harassed & jostled out @ the building access. The London [?] police have been called in, & now those resources will also go to crowd control & investigating threats.)
Under the Hippocratic Oath, doctors are to do no harm. Failing that, I suppose that the corollary is to minimize pain. Current medicine has gone as far as it can - Charlie was a candidate for nucleoside treatment (a version of the US treatment on offer). But he suffered severe seizures while the hospital was seeking permission to have Charlie so treated - the seizures & the underlying condition caused the doctors to cancel the nucleoside treatment.
It seems that it's not over yet. Charlie's parents back in court.
Whilst I sypathise with the parents, the child is in intensive care with round the clock nursing care, the hospital ventilator won't fit through the house door and they live at Bedfont next door to Heathrow Airport, very soothing for Charlies final days.
I am sorry for the terrible decision you had to make with regards to your father. I think in Charlie's case the doctors did know that right from the beginning treatment was sadly hopeless, that is why the courts (and now thankfully the unfortunate parents) have come to the decision that has been made..........the right decision.
Well, to be honest, I don't think anyone commenting on this thread really is a medical expert on Charlie Gard's condition. I don't blame the parents one bit because they believed they were fighting for their child's life and there but for the grace of God go I, as someone else said upthread.
Most serious medical conditions today were considered hopeless till someone pushed the envelope, and when they did it, most people thought they were crazy, misinformed, etc. Every single day, medical advancements are made that were unheard of just a few years ago, or were someone's pipe dream. Some experimental methods succeed, some fail, but I will not blame these parents for hoping against hope for their son.
They are blaming GOSH for not doing this treatment sooner. I understood why they fought, to an extent, but they go too far.
The nucleoside treatment? Charlie was a candidate for a version of that - giving him the precursors to the DNA he couldn't synthesize, there in UK, possibly @ GOSH (I don't remember the details). However, as the hospital was applying for the ethical permission to execute the treatment, Charlie suffered a series of persistent seizures. Given the seizures, the neural (?) damage they caused, the hospital decided against proceeding with the nucleoside treatment.
And I'll say this too - you know, the British healthcare system was going to EVENTUALLY be right, the longer the treatment the parents sought was postponed. I mean, DEFINITELY without the treatment, Charlie was going to die. He only had a slim chance under the best of circumstances with the treatment - and it needed to be done as quickly as possible.
It's no great boon to the British healthcare system or courts that they will eventually be "proven right." Charlie's health continued to deteriorate while the case muddled through the hospital administration and legal systems and there are too few cases worldwide for anyone to be a true medical expert on this rare disease, and certainly judges, lawyers, and medical administrators weren't experts.
Nor are the parents - and they ARE the parents of this boy, no one else. He is flesh of their flesh and bone of their bone. There is no one alive who could possibly care more for his wellbeing than his parents.
I'm not saying his parents were right and the courts were wrong. I'm just saying that if you drag it out long enough, treatment definitely becomes a moot point.
And I'll say this too - you know, the British healthcare system was going to EVENTUALLY be right, the longer the treatment the parents sought was postponed. I mean, DEFINITELY without the treatment, Charlie was going to die. He only had a slim chance under the best of circumstances with the treatment - and it needed to be done as quickly as possible.
It's no great boon to the British healthcare system or courts that they will eventually be "proven right." Charlie's health continued to deteriorate while the case muddled through the hospital administration and legal systems and there are too few cases worldwide for anyone to be a true medical expert on this rare disease, and certainly judges, lawyers, and medical administrators weren't experts.
Nor are the parents - and they ARE the parents of this boy, no one else. He is flesh of their flesh and bone of their bone. There is no one alive who could possibly care more for his wellbeing than his parents.
I'm not saying his parents were right and the courts were wrong. I'm just saying that if you drag it out long enough, treatment definitely becomes a moot point.
He never had even a "slim chance" of any meaningful improvement.
He never had even a "slim chance" of any meaningful improvement.
Yah, that's been the problem. Charlie's condition is very rare - most children with it die early on. The experimental treatment proposed doesn't directly address Charlie's variant - & so its success was very iffy to begin with.
As for the parents - they should probably be offered psychological counseling & support. Charlie's defective mitochondria are the result of genetic recessive inheritance on both sides of his family tree. Certainly if the Gard's marriage survives all this, they should have genetic screening & counseling - according to the inheritance charts, one child of four should be clear of the recessives, two out of four will carry the recessives forward, & one will have the full-blown disease. But that's a statistical case - actual results in the World will vary.
The Gards can have more children - but I don't know what that would do for their state of mind - if they would consider aborting early if the mitochondrial problem surfaces again in a fetus. It's a very tough call.
Yah, that's been the problem. Charlie's condition is very rare - most children with it die early on. The experimental treatment proposed doesn't directly address Charlie's variant - & so its success was very iffy to begin with.
As for the parents - they should probably be offered psychological counseling & support. Charlie's defective mitochondria are the result of genetic recessive inheritance on both sides of his family tree. Certainly if the Gard's marriage survives all this, they should have genetic screening & counseling - according to the inheritance charts, one child of four should be clear of the recessives, two out of four will carry the recessives forward, & one will have the full-blown disease. But that's a statistical case - actual results in the World will vary.
The Gards can have more children - but I don't know what that would do for their state of mind - if they would consider aborting early if the mitochondrial problem surfaces again in a fetus. It's a very tough call.
I am sure they have had counseling concerning the risk of recurrence.
There are other alternatives, of course. One of the simplest would be to use a sperm donor who tested negative as a carrier of the problematic gene. Another would be in vitro fertilization with testing of the embryos before implantation. Then only unaffected embryos could be implanted. A hard decision at that point would be whether to implant an embryo with only one copy of the gene - a carrier who will not have the condition himself but who could have a child with it. My feeling would be that the risk of a carrier child finding a partner who was also a carrier would be astronomically small and having a child who was a carrier would be totally acceptable to me.
They only have that right if, and only if, it does not prolong or increase suffering. By your statement can I assume you'd be fine setting Charlie on fire if they believed it may save his life? I'd hope not. Would you be fine permitting vegan parents children to die of malnutrition, or parents with religious objections to refuse blood transfusions? If not we agree that parental rights are not of greater importance than the rights of the child.
Parental rights only permit parents to make informed decisions about the best welfare of their child. Parents who abuse their children lose the right to make these decisions, in this case given the circumstances while I don't believe that the intent is to cause harm, the outcome of parental actions in their frantic pursuit of ANY alternative than the global medical consensus rises to the level of abuse, it's not intended, and it's perfectly understandable, but that doesn't change the net result.
Further the money raised is in the millions for treatment and a cure it will take billions if not trillions, we'd need two primary treatments one to cure genetic damage in living organisms (safely and accurately gene splicing humans in vivo) to other to regenerate neural tissue damage. Neither are optimistically less than a decade from initial trials. The cost to accelerate would require several orders of magnitude more funding, without any guarantees of success or even guarantee of acceleration.
Finally of course what does the NHS have to gain acting as it has? GOSH has had its diagnostics and treatment of this child under the microscope of international medicine, if it's intent was to cover up negligence it's a spectacular failure, the reputation of the hospital is based on its diagnostics and treatment so any errors are known across the world, both from court transcripts and at other medical facilities who have received for review Charlie Gards medical notes. If you screwed up you don't take your case to court in an attempt to cover it up. The NHS prognosis is seconded by every medical establishment who reviewed his case for UK and European courts, and even the Doc who offered his experimental nucleoside treatment.
You have to understand how this case is being played out in American conservative media circles and among conservative Christian Americans. Basically they believe this is what god awful socialized national state run medicine does: kill innocent babies. Crazy huh, but welcome to conservative Christian America and their lies and distortion.
The nucleoside treatment? Charlie was a candidate for a version of that - giving him the precursors to the DNA he couldn't synthesize, there in UK, possibly @ GOSH (I don't remember the details). However, as the hospital was applying for the ethical permission to execute the treatment, Charlie suffered a series of persistent seizures. Given the seizures, the neural (?) damage they caused, the hospital decided against proceeding with the nucleoside treatment.
Right. I am on the side of the hospital in this.
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Complicated problem, complicated treatment
