Baby Charlie Gard's life

[once_upon]

Since the money to pay for the treatment has been raised by the parents, it would seem to me the cost of the treatment is likely not a factor in the decision.

The amount raised, would not pay for even a small amount of transport with medical staff, ventilator and necessary equipment, drugs, fluids, feeding tubes/solutions, etc. Let alone a day or two of treatment.

For clarification, the treatments that the parents want to take Charlie to do not offer any improvement. This has been stated by the doctor who would be providing the experimental treatment. At best, it would prevent further deterioration.

The question remains whether further intervention is in his best interest. At what point is further medical intervention cruel?

Yes, the point of pain and tissue composing. How many of you are willing to keep your pets alive knowing the amount of suffering? The child is not able to tell you anything. I assume (and we know what that says about u and me), they see changes in heart rate etc, when painful stimuli is applied.

What's actually stopping them from going to the US? Is it just a matter of the need to wait in the UK until able to leave? Or are the UK doctors unwilling to assist with a transfer regardless of cost?

It very complex transfer. This is a trans Atlantic trip, coordinating many levels of needs/cares. It's not a let's cap off all IV lines and bundle him in an isolette. And not without risks. Remember we are healthy individuals are subject to DVTs. Pulmonary thomboli are only one additional issue, there are lots more.

For a country (USA) whose citizens demand some justice for those who cannot speak for themselves, we seem to forget this in this case and that is only a part of why ethics committees exist. Administration of a non researched, even in animals, treatment based upon one researcher thought without any treatment guidelines in place is very troubling and a greater slippery slope. One must ask why this physician(s) is so willing to do this. Fame, fortune what. Because if he was to die as a part of the treatment, it will be written off as patient issue not treatment issue. The real reasons will not be known because we don't have protocols in place. So why is the physician really offering an unknown treatment?

For all the leaked information we have, there is a multitude of things we don't.

Decomposing body tissue caused multiple organ failure and reluctance to remove ventilators support is really difficult to deal with. @Kasey has much more experience than any of us. But I've seen similar situations.

 

[icie]

This is sounding like a Terry Schiavo case. A very sad situation, when there is no hope for recovery.

 

[Japanfan]

In this case the doctors don't think death is harm but the best thing but the parents are totally opposed and where's any compassion or understanding?

From what the articles says, the baby is suffering and in pain. Which could be seen as greater harm than death - death is a reprieve, and from that view point, is the compassionate choice. There's no evidence that the treatment will help the baby, so sending him halfway across the world on a plane could be seen as just prolonging the suffering.

It appears that the parents can't arrange the transfer on their own, without the cooperation of the hospital?

We'll see what the Court determines on Thursday.

 

[icie]

However, the parents do have a lot of money and should be able to pay for the transfer on their own, even if they have to hire medical professionals independently. I don't know that the hospital could actually stop them without involving the pertinent court.

Even with the money the parents raised, I wonder if Charlie would even survive transfer to the US for highly experimental treatment?

 

[once_upon]

@Japanfan define "a lot". I suspect the trans Atlantic trip would be well over $550,000 with all the care staff, equipment, etc. Not including parent transport. The first week of labs, stabilization, testing to determine how he traveled, what procedures need to be done to administer therapy would eat the rest before any further treatment is done.

 

[snoopy]

Well Trump said the US would pick up the costs. No health care for the rest of you but US taxpayers will pay the tab on this one.

There are a lot of kids dying in the world right now because they don't have access to decent health care. This one had the right (white) parents from the right country to at least get the attention of the world.

 

[WildRose]

How dreadfully sad. Parents who are unable to accept that that for his own sake, they need to let their son go. Poor little thing.

Trump should worry about providing medical care for his own people.

 

[Japanfan]

@Japanfan define "a lot". I suspect the trans Atlantic trip would be well over $550,000 with all the care staff, equipment, etc. Not including parent transport. The first week of labs, stabilization, testing to determine how he traveled, what procedures need to be done to administer therapy would eat the rest before any further treatment is done.

Did I say "a lot" in a previous post? I may have, but must have edited it out.

If I was referring to $1 million, it's a lot more than nothing and enough to pay for the trip over at least.

I realize I assumed that the experimental procedure would be free, given that is contributing to research without any positive outcomes being predetermined (SFAIK).
There are many stories of people being sent to the US for certain kinds of treatment, and oftentimes these are people who could never afford to pay for it. For example, there was a child from Africa IIRC with a cleft palette who went to the US to get it fixed sometime last year, or early this year.

But this being medicine in the US, maybe people do have to pay, if they able to do so.

 

[AxelAnnie]

Did I say "a lot" in a previous post? I may have, but must have edited it out.

If I was referring to $1 million, it's a lot more than nothing and enough to pay for the trip over at least.

I realize I assumed that the experimental procedure would be free, given that is contributing to research without any positive outcomes being predetermined (SFAIK).
There are many stories of people being sent to the US for certain kinds of treatment, and oftentimes these are people who could never afford to pay for it. For example, there was a child from Africa IIRC with a cleft palette who went to the US to get it fixed sometime last year, or early this year.

But this being medicine in the US, maybe people do have to pay, if they able to do so.

Often times someone from the sponsoring group sets up the hosp, doctors, etc to donate their time to the project.

 

[genevieve]

How dreadfully sad. Parents who are unable to accept that that for his own sake, they need to let their son go. Poor little thing.

This. I think the parents are being cruel and selfish in their refusal to accept what is a tragic situation all the way around.

I read last night that 2 US Representatives are proposing giving the baby permanent US residency for his treatment. Of course, they are also supporting the current health insurance shenanigans that will cause US citizens real medical harm. GMAFB.

 

[allezfred]

This is a terribly sad situation and the politicians exploiting it should be ashamed of themselves.

 

[skatefan]

Why is it up to the government and not the parents to decide what is best for their child? Does the government love their child more than they do?

It is not the decision of the Government. Government is separate from the judicial system. It is the decision of the British High Court, Court of Appeal, Supreme Court system and then the parents took it to the European Court to consider (who declined to hear the case after reviewing the evidence). The procedure is well established in British Courts to protect the best interests of a child whether it is parents demanding further treatment or parents refusing to allow further treatment. This poor little boy is badly brain damaged, he is blind, he is deaf, he cannot breathe unaided, he cannot move. Yesterday there was an interview on TV with the parents of a boy with a similar condition although not as badly as Charlie. He has been on treatment - which apparently is a powder mixed with his feed/drinks - and after 3 1/2 years his only improvement was that he 'could move his eyes a little'. I'm sorry, but as a parent I would not want my precious baby to simply exist. I'd want him to have a life. I have the utmost sympathy for his parents, but I'm afraid little Charlie was lost to them a long time ago.

 

[antmanb]

And do you think the Columbia-Presbyterian Hospital in NYC, the one that's offered to treat Charlie, is not on a par with British courts and doctors?

I've not read anything to indicate that the US doctors have been to the UK to examine Charlie or assess him. At this point it's hypothetical whether the experimental treatment would be useful or not, I presume they would need to spend more time with him to make an assessment, so I'd say they are nowhere near as knowledgeable about Charlie's case as his current doctors or the numerous courts that have heard the case.

British doctors work for the government and the courts *are* the government.

The courts are absolutely, categorically not the government. The judiciary is a completely different and separate branch from the Government, they are not elected, and they have a duty to apply the law and not write it themselves.

The is a ton of case law in this area, the most common of which relate to Jehovah's Witnesses refusing life saving treatments for their children, and it is a very complicated area, not least because the cases have to be heard quickly and decisions made quickly because of the circumstances.

I would not want to be the person having to make any decision on this case.

And part of me can't help but be reminded of the case (last year?) where the parents of a young boy wanted to take him to Europe to treat a brain tumour, but the courts refused and they took him anyway. I seem to recall the parents being imprisoned for kidnap (how that was even possible when it's their own child?), but they were released after 24 hours and they got their son the treatment, and I seem to recall it did work.

 

[MsZem]

This. I think the parents are being cruel and selfish in their refusal to accept what is a tragic situation all the way around.

I read last night that 2 US Representatives are proposing giving the baby permanent US residency for his treatment. Of course, they are also supporting the current health insurance shenanigans that will cause US citizens real medical harm. GMAFB.

This is a terribly sad situation and the politicians exploiting it should be ashamed of themselves.

Indeed. I'm not going to judge the parents, who are in a terrible situation and are trying to do what they believe is right. I can't imagine how I'd feel if I were in their situation.

But the politicians have no such excuse, and the hypocrisy of US Republicans who voted for the AHCA but are so concerned about this case is impressive even by their disgusting standards.

 

[once_upon]

Did I say "a lot" in a previous post? I may have, but must have edited it out.

If I was referring to $1 million, it's a lot more than nothing and enough to pay for the trip over at least.

I realize I assumed that the experimental procedure would be free, given that is contributing to research without any positive outcomes being predetermined (SFAIK).
There are many stories of people being sent to the US for certain kinds of treatment, and oftentimes these are people who could never afford to pay for it. For example, there was a child from Africa IIRC with a cleft palette who went to the US to get it fixed sometime last year, or early this year.

But this being medicine in the US, maybe people do have to pay, if they able to do so.

A million dollars is really nothing in terms of long time ventilated - as it apears to be a life long condition. If as someone says a specific formula is needed for life, that's a huge cost, additional surgeries for various conditions, etc. It is not that long for people to reach that mark.

In 1981 dollars a child I took care of as a pediatric nurse, reached that million dollar mark by age 9 months following experimental treatment for liver cancer. That was 1981 dollars. From then on any and all medical care, even minor things like ear infections, was done on Medicaid dollars.

I know you have been following the abysmal state of healthcare in the US. In the case (s) of "free care given to kids from other countries" as mentioned up thread there is usually a sponsoring agency and an outcome that is predictable in terms of restored health. At this point it seems individuals with little to no knowledge of mitochondrial diseases and their eventual outcome are the "sponsors". How long can one rely on Go Fund me effort?

I again assume, that they would eventually return to England, where the state nor the hospital would accept the responsibility of ongoing care. Again, one million dollars seems to be a lot, unless one has experienced the reality of health care costs.

Regarding kidnapping of one's own child. Once the child is made a ward of the state, and medical ethics/court system does not do this lightly, the parents no longer "own" the child. It is indeed a crime.

The doctor offering an experimental treatment has NOT assesed him to be a candidate for treatment? Wow. Again I ask, why does this physician wish to use a non researched treatment? There are medical ethics boards which review and would want to see the ACTUAL research standards when looking at the care.

There is so much not known about the whole situation. Why did the Euro court not hear the case, what if any miniscule chance of recovery, why is this physician without assessing willing to do a treatment that at best is hypothetical but not even a small evidence of "first do no harm" - what is his motive?, what is the actual condition of the baby - what organ failure, etc. - has been advanced to.

People are reacting to emotion not facts. This child with known brain injury and a mitochondrial disease is not likely to wake up, be normal, excel in school...on and on. I've seen parents with expectations that a child will suddenly be cured after brain injuries or birth defects such as reported here. Sadly it won't happen.

Ethics, ethical practice don't seem to be followed here. But as I said we don't have the facts.

 

[once_upon]

Sorry double post. The announcement of a President who again I assume does not have facts or the medical knowledge to really grasp the situation, is using this case to further the GOP's fallacy of death panels, example of universal healthcare being bigly awful for ACA and a huge reason repeal is needed. Your healthcare being driven by death panels not your doctor yada, yada, yada.

 

[rfisher]

Well Trump said the US would pick up the costs. No health care for the rest of you but US taxpayers will pay the tab on this one.

There are a lot of kids dying in the world right now because they don't have access to decent health care. This one had the right (white) parents from the right country to at least get the attention of the world.

Exactly. If this was a poor Black child from west Africa dying from AIDS or even malnutrition, or even a poor white child from Appalachia who is getting his Medicaid cut, nobody would care.

 

[VGThuy]

I feel for the parents, but this seems to be a case of them going through the grieving process and taking out all of their anger on the various medical professionals who aren't telling them what they want to hear. Now that it's become so public, their resolve is probably hardened and it'll be hard for them to reconsider their position now that they are a face of a larger movement.

 

[Winnipeg]

The idea of testing a new cure is good as it could help medicine progress for future but then is he a "guinea pig?"

 

[Kasey]

I feel for the parents, but this seems to be a case of them going through the grieving process and taking out all of their anger on the various medical professionals who aren't telling them what they want to hear.

This is how it reads to me as well. And I know that such a thing is not isolated; families frequently take their frustrations and emotions at the situation out on the medical professionals involved.

The idea of testing a new cure is good as it could help medicine progress for future but then is he a "guinea pig?"

And guinea pig wouldn't be a bad thing, as someone else pointed out, to gain knowledge of this orphan disease; however, then the family needs to know that's what is being done, consents for human medical testing need to be understood and signed, and the world that is reacting needs to understand that there is NOT going to be a happy outcome in this case, period. Sad situation all around, but it sounds like the boy is beyond help already.

 

[Vash01]

The idea of testing a new cure is good as it could help medicine progress for future but then is he a "guinea pig?"

I wouldn't mind being a guinea pig if it is likely help others in the future. However, I am not sure the parents are doing it for that reason. As someone posted, all the publicity has made it difficult for them to pull out of this, or just made it harder for them to see and accept the reality.

Again, I don't have all the facts, and I have not read recent posts. I feel for the parents. The uncertainty must be very difficult for them. If the doctors are sure that the baby has died and/or will remain in a vegetative state forever, perhaps it is better for the parents to let go. At some point they have to, but they are the only ones that can do it, mentally. It may bring peace to everyone, including themselves, but they are so deep in their quest that it must be difficult to let go. If they could find a quiet place within themselves, they may find the answer, without outside influences and disturbances.

 

[attyfan]

...

Again, I don't have all the facts, but why are the courts involved? Is this due to the ethics committee? Is the hospir

I've heard that British law gives the hospitals the right to go to court if they think the parents are not doing what is in the best interests of the child.

 

[once_upon]

I've heard that British law gives the hospitals the right to go to court if they think the parents are not doing what is in the best interests of the child.

US hospitals can discuss with ethics teams and do the same. Generally in an emergent situation. I assume most first world countries do too.
These parents are angry about the situation, that their baby has this issue, that doctors can't fix it, that no one understands their pain.

It's true no one understand their specific pain - we can say we know similar pain, etc.

You do cling to hope, any hope however unrealistic it is. I saw it with parents of kids I took care of. I saw in ourselves when we were told no heartbeat and still thought maybe, just maybe we would hear a cry.

I vehemently disagree with guinea pig orphan disease try it approach. @Kasey touched on it a bit. There aren't any guidelines, there is no way that the Doctor researchers can accurately describe any possible adverse reactions including if there will be intense physical pain which is reportedly one of the very few things we know he responses to.

Use his brain, liver, genetic body post death to study but for the love of the child, no guinea pig mentality. From someone whose career was working with children and the last 18 months with children who had all types of genetic diseases. Just NO

 

[allezfred]

What kind of fcucked up thinking do people have that they would think using a child in pain and distress as a lab rat is a good idea?

 

[Angelskates]

I think the poor child should be allowed to die with dignity, he's in pain, he's suffering, and he's not going to get better. Even the US doctor says he won't get better, so the parents are keeping him alive to merely be alive and stay in pain. It's cruel and not in the child's best interests IMO. I can't see any advantage of the treatment for the child and don't really understand what the parents are wanting to achieve.

I think it's disgusting that Trump has said the US will foot the bill for this and at the same time the US is going through a health care crisis for its own citizens.

Is there a reason that the doctors and treatment can't be brought to the UK to at least avoid the high and risky transport process?

 

[rfisher]

The parents simply aren't ready to accept the fact their child is going to die. It's probably the most difficult thing any person will ever do. They feel helpless and focusing on this is the only thing that gives them some sense of control, even though it is a false sense. I'm very sorry for them.

 

[Angelskates]

The parents simply aren't ready to accept the fact their child is going to die. It's probably the most difficult thing any person will ever do. They feel helpless and focusing on this is the only thing that gives them some sense of control, even though it is a false sense. I'm very sorry for them.

I agree with you and I feel sorry for them too, of course, it's a horrific situation with no happy outcome, but they have some control here, they have some choices and they're choosing to allow their child to suffer. He's not enjoying life as he's dying, he's not happy to be spending his last moments with his family, he's laying there completely helpless and in pain, and completely reliant on others to makes decisions in his best interest. How anyone can think it is the best interest of this child to keep him alive and in pain just to say he's still alive is really something I can't understand. And I'm very, very grateful for that. No one ever wants to understand it. I'm also grateful the judicial system has stepped in to make a decision the parents can't so the child doesn't need to continue to suffer for the sake of being alive. I don't think it's something anyone involved will ever get over, not the parents, the nurses and doctors caring for him, the judges in charge of making hard decisions, they'll all be affected by this forever in varying degrees. I just hope that this final verdict is the last one and this poor child will be able to rest in peace - dragging it on, even if it makes the parents feel some sense of control or like they're doing everything they can - must be so draining and likely just adds to the grief.

 

[rfisher]

I'm sure it does. My son was in Ark Children's ICU years ago. There was a child across the room who had multiple birth defects. She was about 10 at this point and on a ventilator. We watched as the family struggled to make the decision to turn the vent off. Part of the family was in agreement and part was not. It took them a week to finally accept that their child had reached the end of her life. The nurses told me how difficult it was to watch a family go through this and there was nothing anybody could do to help them. What often happens is not only do the parents lose their child, they often lose their marriage and the entire family disintegrates. The glue holding them together is the child and when it's gone, everything falls apart.

I face this every day with my son and only hope I have the courage to let him go when it's time. I like to think I will, but thinking and doing are two very different things.

 

[skatesindreams]

rfisher and Angelskates, your posts speak for me.


I am offended that Trump is attempting to use this tragedy for political gain.

 

[Winnipeg]

Trump offends you?