Baby Charlie Gard's life

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Winnipeg said:
The idea of testing a new cure is good as it could help medicine progress for future but then is he a "guinea pig?"
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I question if useful data could come from this experiment anyway. It's one child in uncontrolled circumstances whose body and brain are already deteriorating. Studies have protocols for a reason. It doesn't seem likely this child would meet them.
 
MacMadame said:
I question if useful data could come from this experiment anyway. It's one child in uncontrolled circumstances whose body and brain are already deteriorating. Studies have protocols for a reason. It doesn't seem likely this child would meet them.
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The standards for orphan disease research are, understandably, very different. Not saying there aren't controlled trials, but to get to that point you often need to do meta-analyses of case studies first.
 
NinjaTurtles said:
The standards for orphan disease research are, understandably, very different. Not saying there aren't controlled trials, but to get to that point you often need to do meta-analyses of case studies first.
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But orphan disease research still has some ethical standards as well as some controls. Particularly when children or those who could be put in the study without consent.
 
once_upon said:
But orphan disease research still has some ethical standards as well as some controls. Particularly when children or those who could be put in the study without consent.
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Sure, because of the consent/assent issue it gets complicated. Plus, most orphan diseases that affect children have incredibly short lifespans and/or come with serious cognitive issues.

I'm not sure that this is a research study that would involve IRBs or other ethics boards. Just seemed like a progressive treatment option and perhaps a case study written up post procedure.

I generally find it noble when people "donate" their bodies to research. Even if that was the byproduct of this situation, it's not clear to me that's how the parents see it. Given that, it's really not appropriate when the expectations don't meet reality.
 
Ok, while not orphan diseases - because those were handled by the two research centers - any research studies I was involved in had IRB reviews.. For example, in the early stages of ALL relapse with CFS infiltrates in the mid 70's. At the time "cure" was thought to be accomplished in about 50% of the kids. Until around year 5, when relapse occurred with CFS involvement. Before St. Judes came up with huge studies.

Same with gamma globins therapy for something that I can't recall. Mitochondrial diseases are difficult and yeah no or very little options. Or kids with chronic malabsorption issues, our unit did all the studies (developed by a physician I dealt with) which did become standard treatment. We did what was known as 3232a, 3232b etc formulations the formula trials etc. all of which could cause more bowel tissue destruction. We had to do many days of explanations so parents knew the physicians were serious about complications. Seems like formulas would be an issue or big thing. Think PKU kids, where we didn't know what harm, brain injury, permanent harbor death.

It's crap dealing with kids, it is essential parents or guardians understand what it really is, the lack or total absence of cures, significantly pain or dangerous consequences, to the child. From reports this family believes there is a possibility of cure. That's lack of ethical standards.

It's dangerous to throw caution to the wind and jump on any idea without some idea what are potential consequences. Death, pain,tissue destruction, etc.
 
once_upon said:
From reports this family believes there is a possibility of cure. That's lack of ethical standards.
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ITA. You can't do this without being on the same page. I would guess there's no way a hospital would let this go forward without some proof the parents were informed and understood what was told to them about the intent and prognosis.
 
The case is back in the High Court today and Charlie's parents have already walked out claiming it is biased and a disagreement with one of the High Court judges. There is an argument going on in regards to the whether Charlie's skull is growing. The Dr's say no thus suggesting there is no brain development but the mother claims she has been measuring it and disagrees with the Dr's measurements. The Judge have ordered an independent outside agency to measure the skull within the next 24 hours. I really believe the parents are clutching at straws and it is heart-breaking for all concerned.

http://www.bbc.co.uk/news/uk-england-london-40593286
 
Lorac said:
The case is back in the High Court today and Charlie's parents have already walked out claiming it is biased and a disagreement with one of the High Court judges. There is an argument going on in regards to the whether Charlie's skull is growing. The Dr's say no thus suggesting there is no brain development but the mother claims she has been measuring it and disagrees with the Dr's measurements. The Judge have ordered an independent outside agency to measure the skull within the next 24 hours. I really believe the parents are clutching at straws and it is heart-breaking for all concerned.

http://www.bbc.co.uk/news/uk-england-london-40593286
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Of course they are clutching at straws. This is their baby!
 
skatesindreams said:
Unfortunately, these parents seem unwilling to accept the reality of medical information which they have undoubtedly been given by many experts. They are prolonging the suffering of their child; and themselves.
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I have been following the case of Charlie with particular empathy because my family is going through a similar dilemma. My little grandaughter has Batten disease. This is a incurable genetic neurodegenerative disease. Children who are apparently normal develop symptoms around the age of 3 or 4. My grandaughter is now 6 ½, she is blind, cognitively impaired, unable to stand, walk or speak. Shortly she will also need a feeding tube since swallowing is becoming impossible. She is destined to die probably in a few years when the disease causes the failure of some vital organ. There is no hope for her even if there does exist an experimental gene transplant therapy for, unfortunately, other variants of this disease but not the one she has. However a gene therapy trial, which costs about $4M to initiate for our variant, would not “cure” her. The hope is that it might slow or stop the neurological degeneration but nothing can restore the destroyed neurons of her central nervous system. Therefore, the question is: since the child is already severely disabled in every aspect, and destined to get even worse, does it make sense, first of all, to sell every asset, to devote every energy to fundraising in the hope of succeeding in getting this trial off the ground? And then, if we manage by some miracle to raise $4M, is it rational to prolong her existence by administering this experimental therapy merely to have her “vegetate” in a completely unaware state for years? My daughter-in-law reasons exactly the same way Charlie's mother reasons. She wants her daughter to remain alive at all costs.
If anyone would like to give us a hand with the fundraising, No donation is too small. Thanks

Help us SAVE MILA!

Six months ago we had an ambitious idea of starting a trial to save our daughter, Mila's life. Thanks to your amazing support, our gene therapy trial is finally scheduled for next spring!! We’re finalizing our contract with one of the best hospitals in the world, who generously offered to cover part of the costs of the trial. However, IF WE DON'T RAISE AN ADDITIONAL $1M BY SEPTEMBER, EVERYTHING STOPS.
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I'm so sorry to hear about your granddaughter Italian Fan. IIRC, you've mentioned the girl's condition on the board before.

My heart goes out to you and your family.

Is the family in agreement about keeping her alive at all costs?
 
skatesindreams said:
Unfortunately, these parents seem unwilling to accept the reality of medical information which they have undoubtedly been given by many experts. They are prolonging the suffering of their child; and themselves.
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A couple of weeks ago IIRC, Charlie's vent was going to be turned off after the courts had said no more. His parents said that the hospital refused to let them take him home to die. There was no reason given for this stance. I found this to be quite shocking. Does anyone know the hospital's reasoning behind this? Seems to me had they allowed this, Charlie would no longer be suffering.
 
Winnipeg said:
I wonder if they have counsellors involved? This must be so difficult, I cannot imagine.
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I have absolutely no doubt that the hospital must have offered counselors and social workers at every step, but you can't make someone accept counseling if they don't want it.

ItalianFan, I'm sorry to hear about your granddaughter.
 
skipaway said:
A couple of weeks ago IIRC, Charlie's vent was going to be turned off after the courts had said no more. His parents said that the hospital refused to let them take him home to die. There was no reason given for this stance. I found this to be quite shocking. Does anyone know the hospital's reasoning behind this? Seems to me had they allowed this, Charlie would no longer be suffering.
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I think dying at home sounds simpler than it is. It's not the matter of unhooking him from all these machines and taking him home to die after a warm time at home; rather, he could easily die on the way home or before. Would he be in pain while this happens? How stressful is the transfer to his body? Or do you transfer all the equipments home, at a great cost both financially and staff wise? Then does the NHS have to offer that to every dying child or patient? Plus, Charlie has been in the hospital since October - the hospital has sadly been his home for most of his life.

This is all just my thoughts, so others more informed can correct me if I am wrong.
 
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I also wonder if there are some real issues about letting someone who is in critical condition leave the hospital, even with waivers and all of that.
 
oleada said:
I think dying at home sounds simpler than it is. It's not the matter of unhooking him from all these machines and taking him home to die after a warm time at home; rather, he could easily die on the way home or before. Would he be in pain while this happens? How stressful is the transfer to his body? Or do you transfer all the equipments home, at a great cost both financially and staff wise? Then does the NHS have to offer that to every dying child or patient? Plus, Charlie has been in the hospital since October - the hospital has sadly been his home for most of his life.

This is all just my thoughts, so others more informed can correct me if I am wrong.
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It gets to be really sticky when you factor in cost. The decisions at this level are not (I would think) made by a cost analysis. If a cost-benefit analysis were made on each surgery, intensive care decision, hospice.........where do you start and where do you stop? Take the motorcyclist who is whizzing down the highway between cars and crashes. Do you spend millions on someone who clearly through their behavior brought this on themselves. How do you treat smokers in end stage lung failure?

The actions of the hospital and the parents may not make sense if taken individually and examined for merit............but if you look at the total system and try to apply the rules evenly you arrive at a different place.

How about a fertility treatment pregnancy that is not reduced? 5 babies born.......2 lbs and under. Require gazillions of dollars. All make it. Virtually fine. (Busby Family - TLC's Outdaughtered). Where do you leave room for miracles? And, how do you decide?
 
oleada said:
I have absolutely no doubt that the hospital must have offered counselors and social workers at every step, but you can't make someone accept counseling if they don't want it.
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This. I remember a family whose little boy was dying of leukemia. Dad was going to "put him on life support until they found a cure". The baby oncologist was wanting to do everything. Mom was more realistic

The little guy was almost 3 and the smartest kid I knew. He told me a parable about a turtle who had a mommy and daddy on earth, but also was very, very tired of hurting. He didn't want to hurt his earth mommy and daddy but didn't want to hurt anymore. He asked if I would tell his mom and dad the story.
I pulled his parents and his doctor into an empty patient room and said this is the story teddy wanted you hear. Now that I've told you, I'm going to play with teddy. Do what you need to do, but hear him.

Sometimes it's time to listen to kids. Charlie is showing signs of pain. I hope his parents hear his story. There are worse things than death.
 
AxelAnnie said:
It gets to be really sticky when you factor in cost. The decisions at this level are not (I would think) made by a cost analysis. If a cost-benefit analysis were made on each surgery, intensive care decision, hospice.........where do you start and where do you stop? Take the motorcyclist who is whizzing down the highway between cars and crashes. Do you spend millions on someone who clearly through their behavior brought this on themselves. How do you treat smokers in end stage lung failure?
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Healthcare providers cannot - and should not - provide care on the basis of whether a person brought a problem or condition on themselves. The duty of care cannot exclude people on this basis. In addition, determining whether a person brought a problem or condition on themselves is tricky. It's not only smokers or obese people. What about a skier who gets severely injured performing daredevil tricks? What about athletes in general, some of whom may utilize healthcare resources more than the average person? What about women who get pregnant knowing they will require extensive care because they have specific health concerns or risks? Parents who choose to have special needs children that will demand a lot from the healthcare system, when they have the option of aborting?

A health care provider simply cannot deny care on such bases. They can't refuse to treat a severely injured person who drove drunk, and only treat the victim. Making such judgments is contrary to the duty of care.

How about a fertility treatment pregnancy that is not reduced? 5 babies born.......2 lbs and under. Require gazillions of dollars. All make it. Virtually fine. (Busby Family - TLC's Outdaughtered). Where do you leave room for miracles? And, how do you decide?
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A health provider simply can't decide to treat only 1 of 5 babies.

There are certain costs that societies simply have to bear, arguably for the collective good. It's part of what is known as the social contract.
 
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Japanfan said:
Healthcare providers cannot - and should not - provide care on the basis of whether a person brought a problem or condition on themselves. The duty of care cannot exclude people on this basis. In addition, determining whether a person brought a problem or condition on themselves is tricky. It's not only smokers or obese people. What about a skier who gets severely injured performing daredevil tricks? What about athletes in general, some of whom may utilize healthcare resources more than the average person? What about women who get pregnant knowing they will require extensive care because they have specific health concerns or risks? Parents who choose to have special needs children that will demand a lot from the healthcare system, when they have the option of aborting?

A health care provider simply cannot deny care on such bases. They can't refuse to treat a severely injured person who drove drunk, and only treat the victim. Making such judgments is contrary to the duty of care.



A health provider simply can't decide to treat only 1 of 5 babies.

There are certain costs that societies simply have to bear, arguably for the collective good. It's part of what is known as the social contract.
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Exactly my point.
 
oleada said:
It's not the matter of unhooking him from all these machines and taking him home to die after a warm time at home; rather, he could easily die on the way home or before. Would he be in pain while this happens? How stressful is the transfer to his body? Or do you transfer all the equipments home, at a great cost both financially and staff wise?
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In the US, at least, this is done as a hospice situation. The patient or decision-maker signs an "out-of-hospital" DNR. Then the intensive care that is not improving the condition but rather delaying the dying process is stopped. Patient care is definitely continued, though. Then the hospice team accompanies the patient home and continues to provide hospice care, including pain control and hydration, in that setting. It may be brief or it may be prolonged, and there is definitely a cost involved. I've been involved in several cases like this, and more often than not, the families regret making the decision to go home because it becomes so overwhelming to go from so much external support to so little.
 
There is so much misinformation out there. Having gone through this process multiple times in Texas, I can tell you how it looks on paper. When the physicians determine that continuing intensive care is futile and only prolonging the dying process, they discuss the situation with the patient or decision-makers and recommend discontinuation of intensive care and continuing palliative care (things like hydration and pain control), accepting that the dying process will continue- this can happen in the hospital or at home. If they disagree and the patient or decision-makers request to continue intensive care against medical advise, the situation can be taken to a hospital ethics committee whose job is to provide an independent assessment as to whether or not it is ethically appropriate to discontinue intensive care. They are not a "death panel." If they agree with the physicians, the information is discussed with the patient or decision-makers. In Texas, they then have a set period of time (I believe it is 7 or 10 days) to locate another facility and another physician who is willing to accept transfer and assume care. If successful, transfer happens (I have never heard of this ever happening, anywhere). If not, the hospital has the legal right to intervene and transition to palliative care against the patient of care-giver's wishes. I've also never seen this happen, because the media and advocacy groups and clergy and politicians get involved, and the physicians and hospital are put into a very uncomfortable situation. So typically, intensive care is continued, the patient dies an agonizingly slow and awful death, the caregivers are miserable and the family is distraught, and it goes on for what seems like an eternity. Everyone sits around wondering if they are doing the right thing. It is terrible. But I've never heard a single discussion about money.
 
I wonder if the parents and especially the moms in these situations choose to continue out of guilt. Like - your the mom, how dare you not do everything to keep your kid alive. And it becomes less about the welfare of the child himself.

I know I would feel guilt in such a situation, like I'm a lesser mom.
 
snoopy said:
I wonder if the parents and especially the moms in these situations choose to continue out of guilt. Like - your the mom, how dare you not do everything to keep your kid alive. And it becomes less about the welfare of the child himself.

I know I would feel guilt in such a situation, like I'm a lesser mom.
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Why guilt?
 
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