Have we talked about Charlie Gard?

[Moxie]

Go, Google your favorite news sources.

 

What am I missing? This child won't recover. If I'm reading correctly, the original doctor that offered help is now saying his brain is too damaged. So, what is it that the Vatican and Trump are offering??

[Carol in Cal.]

To me the issue is, who decides these things?

The hospital won't even release this baby into his parents' custody to die cuddled at home.  That's just not right.

I am hearing this kind of thing more and more--hospitals that grab custody of children for various reasons.

[Guest]

To me the issue is, who decides these things?

The hospital won't even release this baby into his parents' custody to die cuddled at home. That's just not right.

I am hearing this kind of thing more and more--hospitals that grab custody of children for various reasons.

Because the parents have $1.6 million dollars to escape with. Do they get to decide how long this child is on life support or do medical professionals? I can see both sides.

[Word Nerd]

I think it's terrible. It should be up to the parents to decide.

[Guest]

I think it's terrible. It should be up to the parents to decide.

My sister works for hospice so we discuss this a lot. At some point, you (general you) are torturing a person because you can't let them go. How long should parents be allowed to prolong the death of a terminal child?

[Mergath]

I can see both sides. Obviously, the hospital shouldn't be obligated to provide indefinite care for a child who will never recover and might be in pain. But the parents should have been allowed to take him for the experimental treatment if that's what they wanted.

 

I haven't exactly seen his medical records though, so my opinion doesn't mean much.

[Murphy101]

The scenario I fear is my child dying because I can't get them medical care to save their life.

 

This baby is beyond anything medicine has to offer. Transferring him around the world to various hospitals isn't going to change that. Sending him home isn't going to change that. The only point would be to use him as a lab experiment. And I have far greater moral qualms with that.

 

Parent rights are not absolute. These parents have had over 8 months to accept their son's condition. Which I can have understanding for bc sometimes people can't accept that they have reached the end and it's time to let go. But that understanding doesn't mean I think it wise or kind to continue to prolong his dying. Sometimes, society does have to step in and say enough. This should be rare, extreme, clear cut cases and a prolonged process to do so - which this has been.

 

It's sad and it's awful and I wish it wasn't so - but it is what it is.

[marbel]

I can see both sides. Obviously, the hospital shouldn't be obligated to provide indefinite care for a child who will never recover and might be in pain. But the parents should have been allowed to take him for the experimental treatment if that's what they wanted.

 

I haven't exactly seen his medical records though, so my opinion doesn't mean much.

 

This is about where I am.  I don't understand the legal authority the hospital has to keep the child there if the parents want to take him home, or, for that matter, to another country for an experimental treatment.  

 

And with regard to that treatment... it is experimental.  I think I read somewhere that it has never been used on someone with the exact problem he has. So it would be helpful to science to try it, to find out, wouldn't it?

 

OP: What do you mean about "what the Vatican is offering?"  The last thing I saw was they basically said the hospital/government are right and the parents are wrong; time to let Charlie go.  Has that changed?   

[nixpix5]

To me the issue is, who decides these things?

The hospital won't even release this baby into his parents' custody to die cuddled at home. That's just not right.

I am hearing this kind of thing more and more--hospitals that grab custody of children for various reasons.

This is what bothered me. It can be a slippery slope the more we are ok with relinquishing rights of our children to others. I definitely don't think he should be on life support at home indefinitely but taken off life support to go home and pass in the loving arms of his family? That I feel should be allowed to happen and nobody should have a say over that IMO. Edited July 6, 2017 by nixpix5

[Guest]

This is about where I am. I don't understand the legal authority the hospital has to keep the child there if the parents want to take him home, or, for that matter, to another country for an experimental treatment.

 

And with regard to that treatment... it is experimental. I think I read somewhere that it has never been used on someone with the exact problem he has. So it would be helpful to science to try it, to find out, wouldn't it?

 

OP: What do you mean about "what the Vatican is offering?" The last thing I saw was they basically said the hospital/government are right and the parents are wrong; time to let Charlie go. Has that changed?

I could be wrong but I thought I read that the doctor that offered the experimental treatment has since said that Charlie has too much brain damage from seizures and is no longer a candidate? I also thought I read that the Vatican has offered hospital facilities? Off to google...

 

ETA--it looks like the Vatican is offering to take him so the parents can cut off life-support on their own timeline.

Edited July 6, 2017 by Moxie

[Word Nerd]

Charlie's father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.

“We're now being denied that,†Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.

 

The parents have accepted that life support will be removed and now just want to take him home. I am baffled that anyone would argue that they should not be allowed to. Seriously?

[Murphy101]

Charlie's father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.

“We're now being denied that,†Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.

 

The parents have accepted that life support will be removed and now just want to take him home. I am baffled that anyone would argue that they should not be allowed to. Seriously?

Bc many, like myself, think they are lying about their intent.

[3 ladybugs]

I have been where the parents are with a child and to me this is a matter for the parents to decide. NO parent, with exception of people who abuse and neglect their child, want to see their child tortured. However as a mom I can tell you that there are FEW things I wouldn't do for my child. I am sure everyone here feels the same way. Having a child that born so ill is not easy. I know, I have been there. There are financial considerations in any medical decision, sadly. This is not a case where monitory needs are a concern. Therefore I see no reason for any bureaucrat to decide what is best for a child they don't even know. 

 

I honestly see a case that the parents could make where they ask the US government for asylum because of the situations around this case and that it appears that the government is trying to kill their child. Yes the child needs a VERY big miracle for him to make it to his 5th birthday (for instance) but the parents have the funds to try everything to make that possible. They should have the right to do so. 

 

Walk a mile in their shoes and tell me you wouldn't do the same for any of your children. A child you carried for 9 months and brought home and thought everything was fine with, then have the rug pulled out from under you. What would you want? What would you do?

 

I saw a report yesterday that the reports of the child having limited brain activity are inaccurate. They really don't know, was the report I saw. So we are dealing with a child that could be doing everything they can to live. 

[Guest]

This situation is exactly what many people fear.

Are you talking about universal healthcare?

[EmseB]

They should have been at least allowed to take him to a hospice or home once they remove the vent. Many, many terminal patients choose to die in the comfort of their home with plenty of pain meds.

 

The government/hospital adminstrators being able to control how and where and when someone (someone's child) dies is a lot more scary to me than the parents being able to choose an experimental treatment.

 

The whole thing makes me feel ill. Being told the hospital won't cover the treatment, ok they raised the money, nope it's not going to do any good, those other doctors don't know anything...after months of appeals now he's too brain damaged to do anything. Sorry, our bureaucratic deliberations took too long, oh well, death with dignity. No, that doesn't mean he can go to a hospice, no he can't go home to die. He must die here with us.

 

They are taking him off life support, all the money the parents have won't allow them to "escape" anywhere with their child who can't survive off of a vent.

 

And, oh by the way, just remember the parents are the villians and are the only people who don't have this boy's best interest in mind. They couldn't possibly because they only want to torture him to assuage their own grief. Society must step in and stop these monsters and let them know what's really best.

 

Chilling does not even cover how I feel about all of it.

Edited July 6, 2017 by EmseB

[Guest]

I have been where the parents are with a child and to me this is a matter for the parents to decide. NO parent, with exception of people who abuse and neglect their child, want to see their child tortured. However as a mom I can tell you that there are FEW things I wouldn't do for my child. I am sure everyone here feels the same way. Having a child that born so ill is not easy. I know, I have been there. There are financial considerations in any medical decision, sadly. This is not a case where monitory needs are a concern. Therefore I see no reason for any bureaucrat to decide what is best for a child they don't even know.

 

I honestly see a case that the parents could make where they ask the US government for asylum because of the situations around this case and that it appears that the government is trying to kill their child. Yes the child needs a VERY big miracle for him to make it to his 5th birthday (for instance) but the parents have the funds to try everything to make that possible. They should have the right to do so.

 

Walk a mile in their shoes and tell me you wouldn't do the same for any of your children. A child you carried for 9 months and brought home and thought everything was fine with, then have the rug pulled out from under you. What would you want? What would you do?

 

I saw a report yesterday that the reports of the child having limited brain activity are inaccurate. They really don't know, was the report I saw. So we are dealing with a child that could be doing everything they can to live.

I think you are wrong. I think a lot of parents would not purse medicine to it's limits for a child that will be forever seriously disabled.

 

I think part of the problem is that the hospital is not allowed to speak out so all the info the public has comes from the parents.

[Guest]

i am talking about government making the decision.

But it is the hospital that made the decision.

[Murphy101]

The concept that because they have money, money they got via what boils down to an internet popularity contest, they should have rights and medical care that those without money or who can't win such popularity, don't have is repugnant to me.

 

Either the proposed care is medically beneficial to saving his life or it isn't.

 

Either we as a society are okay with using 11 month old dying babies for medical experimentation that will not improve those babies' lives or we aren't.

 

I'm in the no camp for both and as such, whether the family has million or not doesn't matter one bit to me.

 

As for political propaganda claiming this has anything to do with national healthcare, that's total BS. That baby got more care than most any insurance policy would cover in the states and for sure more than anything people can't afford to pay cash for here too. And his parents aren't going to be filing bankruptcy for all the care he recieved prior to their fundraising. Unlike in the states where all that fundraising probably wouldn't be enough.

[Guest]

It's not peaceful to have breathing support withdrawn while still alive.

 

My bil was assured by doctors that his wife was brain dead after a heart attack so he agreed to have life support removed. She lingered for 30 minutes and all that time she was gasping for breath.

 

This baby is dying, yes, but he's alive. Breathing support until he actually dies is totally reasonable, and the best way to ensure a peaceful and comfortable death. When his brain and heart stop, they'll know that he's gone.

 

To allow the child to suffocate is appalling.

 

The issue of the hospital and the courts having so much power over him shows incredible arrogance on their part.

[happypamama]

I think they should absolutely be allowed to take their son home to die at home, and I think that if they have the financial resources from private sources (which they do) and medical personnel willing to try, they should be allowed to try experimental treatments.

 

Having lost my chance to do all of the things a parent want to do with a child in a lifetime, I completely understand why they want to take him home even for a short time. I have a photo that DH snapped of Nate sleeping on my chest shortly before he died. It's a reminder that for a precious few hours, I wasn't thinking about how he was a sick preemie with too many tubes and wires; all that mattered is that he was my baby, doing normal baby things like taking a nap with his mama. A government shouldn't take that away from people.

[Word Nerd]

Bc many, like myself, think they are lying about their intent.

 

They have money, so they must be lying.

[Murphy101]

But it is the hospital that made the decision.

Yes and no.

 

The hospital petitioned for permission to remove the ventilator. (Which is good, I'm sure no one wants one doctor or one hospital making such decisions.). The onus was on the doctors to present proof this was necessary and best for the patient.

 

From there is moved up through the U.K. system.

 

When the U.K. System repeatedly agreed with the drs/hospital, the parents took it to the human rights violations court of the EU in hopes of pressuring the U.K. to deny the hospital removal of the life support. But the EU agreed with the U.K.

 

Normally I would be ardently pro parent on this type of thing, but not on this case.

[marbel]

I could be wrong but I thought I read that the doctor that offered the experimental treatment has since said that Charlie has too much brain damage from seizures and is no longer a candidate? I also thought I read that the Vatican has offered hospital facilities? Off to google...

 

ETA--it looks like the Vatican is offering to take him so the parents can cut off life-support on their own timeline.

 

Ah, I see.    Thanks for clarifying.  I just wasn't as up-to-date as I thought.  

[ChocolateReignRemix]

after which the parents took it to court and the court ruled in favor of the hospital.

 

You do know that even though we don't have universal health care in the United States, that parents sometimes can lose the right to make medical decisions for their children?

[catz]

 

I think part of the problem is that the hospital is not allowed to speak out so all the info the public has comes from the parents.

 

:iagree:  I do think in many of these cases because of privacy laws you very often only get one side of the story. 

 

This is terribly sad.  I don't blame parents for wanting to pursue further treatment and I don't blame doctors for speaking the truth about the medical reality.  I do think if they want to take him home, they should let him.  Maybe they will run.  So what?  It's their baby.  To me it sounds like he will not survive long off of life support.   We had to make the choice to remove my father from life support a couple years ago.  He was hiking and golfing in the weeks prior.  It was extremely hard.  I can't imagine having to do that for my child. 

 

[Mimm]

Heartbreaking situation. I'm trying not to form a firm opinion because no, I haven't seen anything but the hype and outrage surrounding the situation which rarely has anything to do with the truth.

 

Yes, I care about the parent's rights to make decisions, to do all they can for their child, even long shots that have little chance to succeed.

 

I also care about the dignity of a child who might be suffering needlessly.

 

I'm not Catholic but when one of the most pro life organizations in the world says it's time to let him go, that speaks to me...

[Murphy101]

They have money, so they must be lying.

Nah. I'm too cynical to think only people with money lie.

 

Mostly I think desperate emotionally messed up people often lie to get what they want too.

[ChocolateReignRemix]

:iagree:  I do think in many of these cases because of privacy laws you very often only get one side of the story. 

 

This is terribly sad.  I don't blame parents for wanting to pursue further treatment and I don't blame doctors for speaking the truth about the medical reality.  I do think if they want to take him home, they should let him.  Maybe they will run.  So what?  It's their baby.  To me it sounds like he will not survive long off of life support.   We had to make the choice to remove my father from life support a couple years ago.  He was hiking and golfing in the weeks prior.  It was extremely hard.  I can't imagine having to do that for my child. 

 

 

Because in this case this would do nothing more than make the baby suffer more.

 

I do think a compromise should be possible (ex. holding the passports of the parents) that would allow them to take him home.

[Murphy101]

You do know that even though we don't have universal health care in the United States, that parents sometimes can lose the right to make medical decisions for their children?

And many many parents never get to make medical decisions to start with bc of insurance policies or lack of personal funding. And even if they do, they will likely face bankruptcy for it because we have little to no medical safety net even for preventive and basic care, much less anything more.

[3 ladybugs]

I think you are wrong. I think a lot of parents would not purse medicine to it's limits for a child that will be forever seriously disabled.

 

I think part of the problem is that the hospital is not allowed to speak out so all the info the public has comes from the parents.

I am going to have to back out of this discussion soon. It hits too close to home for me. 

 

I had a daughter that was born so premature that her lungs were not functioning. In her short life though she lived. We never believed for an instant that she wasn't going to come home. She had good days, and bad days but always rallied and pulled through. We always believed she would do so every time. Doctors (especially the young ones) would look at her and say "She is going to die." Implying that what we were doing is pointless. However older doctors would see her and try whatever we were wanting them to try. Many times it actually worked.

 

When she was about 4.5 months old she was sliding down again. We were told that in order for her to go home, she would have to go to the children's hospital to get a trache (among other things). The hospital she was in had done everything they could even try with her. So we insisted that they move her to the children's hospital. She was very ill and the short ambulance ride is one that I will never forget as they had to hand bag her several times. When she got there they were shocked that she survived as many months as she had. They tried everything they could, and told us of another case that they knew of a child that was like her that lived to be 8 years old (or so). Months count when you have a child as ill as this. New treatments are coming out all the time, so weeks, months, years can mean life. However in the end my daughter told us what she wanted. 2 days after being transferred, surrounded by her parents and 2 nurses from the other hospital that loved her as much as we did, while we were laughing about what she used to do, she died. She was 5 months 5 days old. 

 

I have given birth to 2 more children in that hospital that my daughter was in for most of her life. I have talked to the "young" doctor and I can tell that my daughter taught him more then he learned in medical school. She taught him that he shouldn't just give up because of what he thinks he knows. The human body is complex. We (humans) are far from understanding it all. I believe that all children that went into that NICU are treated just a bit better because of the lessons my daughter taught that doctor and others around him. I know my older son got better care because of his sister, as he also went to the NICU. 

 

The parents of Charlie Gard are not doing this because they can't let go. They are doing this because there is hope. A small ray of hope just like how I saw when my daughter was transferred to the other hospital. You better believe that had I heard of a treatment for my daughter that they were not doing I would have done everything in my power to give it to her. The fact that Charlie is still alive tells me that he is still fighting. My daughter died while she was still strapped to the vent. You can die even though you are on a ventilator. Please let the parents make the decisions that they have to for their child. You and I, we will likely forget about this case in a month. For them at the end of the day, they will have to live with their decisions everyday for the rest of their life. I know I live everyday with the decisions I made for all 3 of my children that died. Nearly 11 years later (they were born July 31) and the pain is just like it was then. 

[Crimson Wife]

It's a parental rights issue and the parents should be the ones to decide whether or not to try an experimental treatment. If the UK government had allowed the Gards to bring him here when they first wanted to a couple months ago instead of dragging it through the courts, Charlie would probably have already passed because the U.S. doctor would've tried it and seen that it didn't help.

[Murphy101]

It's not peaceful to have breathing support withdrawn while still alive.

 

My bil was assured by doctors that his wife was brain dead after a heart attack so he agreed to have life support removed. She lingered for 30 minutes and all that time she was gasping for breath.

 

This baby is dying, yes, but he's alive. Breathing support until he actually dies is totally reasonable, and the best way to ensure a peaceful and comfortable death. When his brain and heart stop, they'll know that he's gone.

 

To allow the child to suffocate is appalling.

 

The issue of the hospital and the courts having so much power over him shows incredible arrogance on their part.

The problem here is that your bil did not have explained to him that that is normal and in no way means it wasn't peaceful. He should have had someone in the know explain to him what he might see and hear and what it meant. The human body does all kinds of things as it is dying and even for a bit of time after it has died. Death is not as seen on tv. People have this picture in their head that the dying just suddenly close their eyes and come to a full stop and that's it. Sometimes it is, but often it isn't like that.

[Anne in CA]

The scenario I fear is my child dying because I can't get them medical care to save their life.

 

This baby is beyond anything medicine has to offer. Transferring him around the world to various hospitals isn't going to change that. Sending him home isn't going to change that. The only point would be to use him as a lab experiment. And I have far greater moral qualms with that.

 

Parent rights are not absolute. These parents have had over 8 months to accept their son's condition. Which I can have understanding for bc sometimes people can't accept that they have reached the end and it's time to let go. But that understanding doesn't mean I think it wise or kind to continue to prolong his dying. Sometimes, society does have to step in and say enough. This should be rare, extreme, clear cut cases and a prolonged process to do so - which this has been.

 

It's sad and it's awful and I wish it wasn't so - but it is what it is.

I agree with most of your post, except that I do think the right thing to do is let the child die at home in his parents arms if that's what they want. I have thought a lot about this case even before we discussed it a bit on the political social group. I have had a friend who every physician said was about to die at any moment who responded very well to experimental medicine. It is a good thing she and he husband got the experimental treatment. The end of her life was full of love and activity rather than just dying right away. Also, medical advances were made because she took a risk. Everyone with liver cancer benefits from my friend's risk. The other thing is I have another friend whose dd with Down's was wanted for a certain study and my friend almost lost custody of her to the hospital. The doctor doing the study waited until my friend's child's primary care physician was in Hatie for six weeks on a mission trip and then told my friend (a single parent) that if he didn't participate in the study he would just take custody of the child and deny my friend any visitation for the rest of the child's life. Sooo, I think that was cruel and the child in question suffered A LOT, and was even disqualified from the study later so no medical advances were made that I can see. Just a cruel doctor who thought they had something to gain manipulated a single parent and caused a child a lot of pain. 

 

There are going to be very rare cases where a parent is not going to be able to make a good decision and the courts must step in. This may be one of those cases.  But the real trouble is that no matter how much media attention this has been given, it is hard to know all the ins and outs. 

[6packofun]

But that understanding doesn't mean I think it wise or kind to continue to prolong his dying. Sometimes, society does have to step in and say enough. 

 

 

This is the most frightening statement to me.  Those with the power to decide in the UK can't say it's about money because this family has raised the money just to try something different with no illusions that it will save their son anything other than more time to live in the love of his family.  So they are trying to make it about a moral good--to avoid suffering.  How do they know he is suffering and to what degree?  Because if we're going to make the avoidance of pain and suffering the standard for a quality of life that government/societal entities can END, then it better be damn clear.  This means that every single person suffering with an illness or condition very well may reach a point where having the money or coverage for care is NOT enough and someone can decide that they are in too much pain.  What if that entity decides against the person him or herself that they are in too much pain??  In Charlie Gard's case, the people in charge (can't remember the name of the group) think that the *treatment* will cause him more pain than necessary given the probably outcome but the last I read it wasn't some procedure involving needles or surgery--it was giving him some sort of supplement.  (Someone can clarify this for me; I haven't read this whole thread, either.)  WHY NOT TRY?!!!

 

A life of dignity most often includes suffering and many times that suffering is for GOOD.  I recently read an article about the daily trials and pain of a 20-year old woman with Cystic Fibrosis.  Friends of ours have a daughter living with this.  There is DAILY PAIN.  To say that she's allowed to suffer to live makes sense, but not just because she isn't going to die next week.  I don't believe in a utilitarian view of human value--one where a person's value decreases depending on how much or little they can contribute to society, etc.  Human beings are valuable and so are their lives. Period.

[ChocolateReignRemix]

yes I do know that. And I don't always agree with that either. But I am not really discussing my personal belief. I am saying that this situation is precisely what a lot of people fear, and have been told they are being completely crazy conspiracy theorists.

 

Seems like a silly reason to fear universal healthcare when it occurs in countries without universal healthcare.

[Murphy101]

So how far to recreating Frankenstein's monster do we go with experimenting on the dying and medically vulnerable?

 

How far is it to denying a natural death with dignity for the sake of turning people into lab rats?

 

I completely agree the goal should never be to just avoiding suffering. Suffering is a part of life and, as a RC, it has purpose and can be toward human good.

 

But not all suffering is equal and there is such a thing as medical abuse. There does come a point when medicine causes or prolongs suffering beyond what is humane. That's the question in this case. Where is that point?

[Pawz4me]

I'm with Murphy on this one.

 

In general I'm a pretty strong advocate of parental rights. And I'm absolutely in favor of letting adults who are of sound mind choose to pursue whatever experimental treatment(s) they want for as long as they want.

 

But all parents aren't perfect. All parents don't ultimately have their child's own best interests first and foremost in their minds. Probably most often that's in a good way (they just can't let go) but other times it can absolutely be in a bad way (they're enjoying their few minutes of fame). When medical professionals say, and a court agrees, that a child is beyond saving and is in fact very likely suffering . . . in that case I think the child's right to not suffer takes priority over the parents' wishes.

 

I'm not a medical professional, but my mother was on a ventilator and required terminal weaning. She'd "only" been on it for eleven weeks but was in very fragile condition. I imagine this little guy is also very fragile. The parents may want him home, and I understand that. But I'm not sure that moving him would be in his best interest.

 

There is so much we don't know. From my own experience I'd say almost all medical professionals tend to go overboard in erring on the side of time and trying things and extending life. If these are saying no, it's doing more harm than good now . . . I tend to believe them.

[Bluegoat]

This is the most frightening statement to me.  Those with the power to decide in the UK can't say it's about money because this family has raised the money just to try something different with no illusions that it will save their son anything other than more time to live in the love of his family.  So they are trying to make it about a moral good--to avoid suffering.  How do they know he is suffering and to what degree?  Because if we're going to make the avoidance of pain and suffering the standard for a quality of life that government/societal entities can END, then it better be damn clear.  This means that every single person suffering with an illness or condition very well may reach a point where having the money or coverage for care is NOT enough and someone can decide that they are in too much pain.  What if that entity decides against the person him or herself that they are in too much pain??  In Charlie Gard's case, the people in charge (can't remember the name of the group) think that the *treatment* will cause him more pain than necessary given the probably outcome but the last I read it wasn't some procedure involving needles or surgery--it was giving him some sort of supplement.  (Someone can clarify this for me; I haven't read this whole thread, either.)  WHY NOT TRY?!!!

 

A life of dignity most often includes suffering and many times that suffering is for GOOD.  I recently read an article about the daily trials and pain of a 20-year old woman with Cystic Fibrosis.  Friends of ours have a daughter living with this.  There is DAILY PAIN.  To say that she's allowed to suffer to live makes sense, but not just because she isn't going to die next week.  I don't believe in a utilitarian view of human value--one where a person's value decreases depending on how much or little they can contribute to society, etc.  Human beings are valuable and so are their lives. Period.

 

I find the injection of money into this weird.  It's really not the issue.  It's a question of what is good medical practice.  It is true that there is a point for every person where they are simply dying, pretty much immanently.  And attempts to stave that off are really not changing the basic fact, but are just causing suffering.  To do so begins to do harm, and it is not healing. 

 

As someone above said, even people and organizations and doctors that are very pro-life in every sense understand this - death is a natural process and not something that can be staved off forever.  When we think it can be, that every inch we manage to do that is some kind of victory no matter what the cost, we start to make poor medical decisions. 

 

Why having money to extend treatment even if it is harmful would factor into the equation I do not understand.  And the corollary seems to be it would be ok to do it if they were not covered - as if getting the best treatment should depend on that kind of chance.

[Bluegoat]

I think the thing about tranfering home is, what does that do for the child?  I uspect, none - he can be comfortable as possible where he is, and "home" has no emotional content for him.

 

It might be a kindness for the parents, if it was neutral for the baby.  But I wonder if just getting him home wouldn't mean some invasive procedures.  So, pain for him but no benefit to him.

[Crimson Wife]

But not all suffering is equal and there is such a thing as medical abuse. There does come a point when medicine causes or prolongs suffering beyond what is humane. That's the question in this case. Where is that point?

 

Dragging it through the courts prolonged Charlie's life more than anything else IMHO. The UK could've let the Gards take Charlie to America months ago but instead they forced a legal battle.

[wonderchica]

So what would happen if he was sent home to "die peacefully in his parents' arms"? What would it look like? Would he go on life support? Seems unlikely. Will he be taken off and die before he reaches home? Weaned from the vent at home? I am thinking it won't be the peaceful, calm passing his parents and others are imagining.

[ChocolateReignRemix]

Dragging it through the courts prolonged Charlie's life more than anything else IMHO. The UK could've let the Gards take Charlie to America months ago but instead they forced a legal battle.

 

Or the parents could have listened to the person who was willing to do the treatments until he saw the entire case file, at which point he said the treatment would not be in the best interest of the child.

[Murphy101]

I'm with Murphy on this one.

 

In general I'm a pretty strong advocate of parental rights. And I'm absolutely in favor of letting adults who are of sound mind choose to pursue whatever experimental treatment(s) they want for as long as they want.

 

But all parents aren't perfect. All parents don't ultimately have their child's own best interests first and foremost in their minds. Probably most often that's in a good way (they just can't let go) but other times it can absolutely be in a bad way (they're enjoying their few minutes of fame). When medical professionals say, and a court agrees, that a child is beyond saving and is in fact very likely suffering . . . in that case I think the child's right to not suffer takes priority over the parents' wishes.

 

I'm not a medical professional, but my mother was on a ventilator and required terminal weaning. She'd "only" been on it for eleven weeks but was in very fragile condition. I imagine this little guy is also very fragile. The parents may want him home, and I understand that. But I'm not sure that moving him would be in his best interest.

 

There is so much we don't know. From my own experience I'd say almost all medical professionals tend to go overboard in erring on the side of time and trying things and extending life. If these are saying no, it's doing more harm than good now . . . I tend to believe them.

I think the process is good to have but I'm not particularly trusting of courts.. There are a LOT of court outcomes on end of life issues that I do not agree with. But this case is one I happen to agree with the courts about and think it is good there is a process for such cases.

[MinivanMom]

I think the thing about tranfering home is, what does that do for the child?  I uspect, none - he can be comfortable as possible where he is, and "home" has no emotional content for him.

 

It might be a kindness for the parents, if it was neutral for the baby.  But I wonder if just getting him home wouldn't mean some invasive procedures.  So, pain for him but no benefit to him.

 

I think the point of transferring home is so that the parents can have the peace of those last moments in a place where they have privacy and emotional safety. 

 

Can you imagine having to say goodbye to your child in the hospital that fought in court to take him off child-support? Can you imagine having the drs and nurses that *hate* you smugly standing over you after pulling life support? Can you imagine never having that private moment to say goodbye?

 

There's no reason an infant on life support can't be safely and painlessly transferred to a home environment before removing that support. The hospital staff may think they are doing the best thing for Charlie by removing life support, but refusing the transfer is just one last way to screw over the parents and exert control. I lose all respect for the hospital on that one.

[EmseB]

So what would happen if he was sent home to "die peacefully in his parents' arms"? What would it look like? Would he go on life support? Seems unlikely. Will he be taken off and die before he reaches home? Weaned from the vent at home? I am thinking it won't be the peaceful, calm passing his parents and others are imagining.

 

 

You do realize it is extremely common for terminally ill patients to come home to die with hospice assistance right?  In the US, in the UK...a lot of places. Why do you assume that the parents haven't thought this through? Why assume the parents want to hurt their son for their own gain (whatever someone thinks they are gaining from this)?

 

But to say the parents don't get to make that decision? Accusing them of nefarious motives, abuse, torture?  Why?  No one accused my uncles and my mother of that when they asked to bring my grandma home on hospice and no one knew her wishes either as she couldn't speak. She died quietly as her breathing simply tapered off.  Are all deaths like that? No. But were the next of kin abusive monsters for bringing her home? Is anyone who has a terminally ill relative on hospice at home horrible abusers who don't trust doctors and want to torture the patients? Why assume that death would be any better in the hospital rather than out of it?  They have to remove life support either way, so why not remove and take the baby to a hospice (which are designed exactly for this type of scenario) or to their own home with a hospice worker (again, exactly for this kind of thing).

 

The hospital and courts are the one's who put the Gards in this position, and now they are accusing the Gards of being some horrible abusers who just want to torture their own child because they are too unraveled with grief to know their own minds or to even care for their own child in any way, even in or especially in his passing.

 

I just can't get over accusing this parents of abuse and torture of their own child.  That is such a horrific charge to levy at people going through something like this. To assume their motives are sinister. They would have to hate their son in order to be what you all are saying they are.  Just gross.

[Pawz4me]

I think the point of transferring home is so that the parents can have the peace of those last moments in a place where they have privacy and emotional safety. 

 

Can you imagine having to say goodbye to your child in the hospital that fought in court to take him off child-support? Can you imagine having the drs and nurses that *hate* you smugly standing over you after pulling life support? Can you imagine never having that private moment to say goodbye?

 

There's no reason an infant on life support can't be safely and painlessly transferred to a home environment before removing that support. The hospital staff may think they are doing the best thing for Charlie by removing life support, but refusing the transfer is just one last way to screw over the parents and exert control. I lose all respect for the hospital on that one.

 

I wouldn't be so sure. When my mother was on a ventilator she needed to be transferred from one hospital to another. They were at the most five miles apart. It was a hugely big deal. Not just any ambulance and crew can do it. Plus the issue is, I think, what is best for the child. Not the parents. I think if I were the parent my "emotional safety" would come a big, giant step behind what was in my child's best interests. I know it did when I was in the nightmare of it with my mom. Having BTDT and seeing what goes into moving one of these patients -- I kind of doubt his interests would be served at all by a move.

 

Not to mention that your characterization of "pulling" and "smugly" and "hate you" is in all likelihood totally wrong.

[mamaraby]

Can you imagine having the drs and nurses that *hate* you smugly standing over you after pulling life support? Can you imagine never having that private moment to say goodbye?

That's a bit extreme, don't you think? Disagreeing on how to move forward, even through the court system does not mean that the doctors and nurses hate them. We can disagree on lots of things including how this particular case has gone, but that doesn't mean that I hate you.

 

Is there some actual proof that demonstrates how the hospital, doctors, and nurses hate this family and would deny them a private moment to say goodbye?

[Guest]

I think the point of transferring home is so that the parents can have the peace of those last moments in a place where they have privacy and emotional safety.

 

Can you imagine having to say goodbye to your child in the hospital that fought in court to take him off child-support? Can you imagine having the drs and nurses that *hate* you smugly standing over you after pulling life support? Can you imagine never having that private moment to say goodbye?

 

There's no reason an infant on life support can't be safely and painlessly transferred to a home environment before removing that support. The hospital staff may think they are doing the best thing for Charlie by removing life support, but refusing the transfer is just one last way to screw over the parents and exert control. I lose all respect for the hospital on that one.

Wow, you really don't think much of the medical profession. I think you are probably way off base regarding the feelings of the doctors and nurses. Wow. Edited July 6, 2017 by Moxie

[EmseB]

 

Not to mention that your characterization of "pulling" and "smugly" and "hate you" is in all likelihood totally wrong.

 

I have had a baby in the NICU for a short stay.  I have had my DH in the ICU for a short stay.

 

It is very, very hard to even ask questions of the nurses and doctors without them reacting as if you are an adversary. Not all, of course, but many.  Smug and disdainful is exactly how I would describe it, about 65% of the interactions I had. And when I discovered they made a mistake?  Oh man, I was on the poop list for sure, even though I never got angry with them once.

 

Now, if you're a nurse and you believe these people are torturing their child, medically abusing him, and causing him great pain to him for their own benefit then how does that play out on a daily basis of interacting with them?

 

In short, I would definitely believe that there is, at the very least, and extremely tense relationship with hospital staff, if not worse.  Because, again, the belief is that these parents are abusing their child because they want to.  They are treating their baby as, as someone above put it, Frankenstein's monster.  They are prolonging his extreme suffering for their own benefit.  If you believe that about these people, how could you even look them in the eye to have civil interactions with them?

Edited July 6, 2017 by EmseB

[MinivanMom]

Wow, you really don't think much of the medical profession. I think you are probably way off base regarding the feelings of the doctors and nurses. Wow.

 

Actually, I have a great respect for the medical profession. But I've seen first-hand how high emotions can run in situations like this. 

 

Medical professionals absolutely take a disliking to parents, and it can get very ugly. And parents who have had a hospital fight so hard to take their child off life-support will never feel emotionally safe with that set of medical professionals. *I* don't think the drs & nurses are glad to see Charlie die, but you have to imagine how the parents feel and may perceive the situation.

 

If there was ever a situation where it would be best for hospice to come in as a neutral 3rd party and handle the transfer and the care as the patient dies, this is that case.