Have we talked about Charlie Gard?

[unsinkable]

Maybe they have no agenda but just see it differently than you. (1.)They see it as the court making the decision to agree with the hospital's opinion. 

 

The court did not exclusively rely on the hospital's medical advice. They sought advice from outside medical professionals, and even allowed the American doctor to examine Charlie and give his opinion. (2.) I see it as the court was referred a case about 2 parties who could not agree. Both parties gave their recommendations, but the court was free to side with either party or do something entirely different. They sought expert advice from a variety of independent professionals, ordered their own tests on Charlie, and came to a conclusion that happened to agree with the hospital's, but was never guaranteed to agree with the hospital.

 

As an American, I feel sympathy for the parents and think they should have been allowed to seek treatment, however futile. I think that under their laws, however, that they were treated fairly and compassionately. I'm not 100% ok with letting even sick babies be given experimental drugs that haven't been tested on mice, but on the other hand, a chance is a chance. IMO, it's easy to feel sympathy towards and see both sides. 

(1.) It's possible there is no agenda. But when the same phrases are repeated, and the "Like Brigade" comes marching out of the woodwork...it really makes me wonder what is going on.

 

(2.) The American doctor came last week. The initial ruling where the court upheld the hospital's opinion to turn off Charlie's vent happened in April. 

[Daria]

 

 

(2.) The American doctor came last week. The initial ruling where the court upheld the hospital's opinion to turn off Charlie's vent happened in April. 

 

The hospital is the one who went back to the court, and asked them to look at new evidence.  That request by the hospital is what lead to the doctors from the American and Vatican hospitals coming to the UK to examine Charlie, where they requested new testing.  Unfortunately, that testing confirmed GOSH's viewpoint that Charlie had already suffered enough damage that the treatment would not work.

 

GOSH clearly felt that it was in Charlie's best interest to allow him to die.  But it's also clear that they were committed to trying to help Charlie's parents come to peace with that decision, including giving them extra time, and consulting with outside experts.  They didn't need to go back to the courts, or allow any of this, and it says a lot that they did it anyway.

[unsinkable]

The hospital is the one who went back to the court, and asked them to look at new evidence. That request by the hospital is what lead to the doctors from the American and Vatican hospitals coming to the UK to examine Charlie, where they requested new testing. Unfortunately, that testing confirmed GOSH's viewpoint that Charlie had already suffered enough damage that the treatment would not work.

 

GOSH clearly felt that it was in Charlie's best interest to allow him to die. But it's also clear that they were committed to trying to help Charlie's parents come to peace with that decision, including giving them extra time, and consulting with outside experts. They didn't need to go back to the courts, or allow any of this, and it says a lot that they did it anyway.

It sounds like you're agreeing with me: the hospital is making all the decisions.

 

Oh, and BTW, I'm still waiting for the sources from you and FaithManor that support all the claims you made about Infantile Spasms.

[Daria]

It sounds like you're agreeing with me: the hospital is making all the decisions.

 

Oh, and BTW, I'm still waiting for the sources from you and FaithManor that support all the claims you made about Infantile Spasms.

 

No, I think that courts made the decision that GOSH was hoping that they'd make.  

[melmichigan]

This is the statement from the high court today. 

 

As a musing I'm wondering if he's on ECMO...

Edited July 25, 2017 by melmichigan

[Χά�ων]

Why would they want that for him?

[Guest]

It sounds like you're agreeing with me: the hospital is making all the decisions.

 

Oh, and BTW, I'm still waiting for the sources from you and FaithManor that support all the claims you made about Infantile Spasms.

Infantile spasms are tricky because not even neurologists agree. That was Benjamin's seizure type and the one we are watching out for here still, and while our pediatric neuro isn't overly concerned about them causing permanent damage there are other specialists who believe they can cause permanent structural changes in the brain, and it is proven they can if the duration of the attack exceed 90 minutes, even with intermittent spasms. In and of themselves they're not dangerous in children over 3 months old, they're more a symptom of damage than the etiology of it. But the condition can cause major skill regression and even death if it cannot be well controlled with medication. We have seen this on the HIE board I'm on with Benjamin.

 

So it's a mixed bag. My own team is more optimistic on them, especially when it isn't as severe in duration. They're harmless if they pop up occasionally but they indicate underlying brain tissue damage (white matter {one of our personal issues}, basal ganglia, cerebellum, generally speaking). But some children with existing polycystic encephalomalacia and similar conditions from brain tissue loss can have the spasms correlating with active regression of skills and deterioration of their overall physical condition.

 

 

This is my layperson parental experience with them. Documentation and pediatric neurologists differ in their views on the condition, office by office, though.

[ChocolateReignRemix]

(1.) It's possible there is no agenda. But when the same phrases are repeated, and the "Like Brigade" comes marching out of the woodwork...it really makes me wonder what is going on.

 

(2.) The American doctor came last week. The initial ruling where the court upheld the hospital's opinion to turn off Charlie's vent happened in April. 

 

You actually worry about who is "liking" someone else's posts?  Well okay then.

[unsinkable]

Infantile spasms are tricky because not even neurologists agree. That was Benjamin's seizure type and the one we are watching out for here still, and while our pediatric neuro isn't overly concerned about them causing permanent damage there are other specialists Uwho believe they can cause permanent structural changes in the brain, and it is proven they can if the duration of the attack exceed 90 minutes, even with intermittent spasms. In and of themselves they're not dangerous in children over 3 months old, they're more a symptom of damage than the etiology of it. But the condition can cause major skill regression and even death if it cannot be well controlled with medication. We have seen this on the HIE board I'm on with Benjamin.

 

So it's a mixed bag. My own team is more optimistic on them, especially when it isn't as severe in duration. They're harmless if they pop up occasionally but they indicate underlying brain tissue damage (white matter {one of our personal issues}, basal ganglia, cerebellum, generally speaking). But some children with existing polycystic encephalomalacia and similar conditions from brain tissue loss can have the spasms correlating with active regression of skills and deterioration of their overall physical condition.

 

 

This is my layperson parental experience with them. Documentation and pediatric neurologists differ in their views on the condition, office by office, though.

I appreciate your reply.

 

I was looking for sources of where FaithManor got her particular statistics. I haven't been able to find sources that back up much of what she has posted.I

 

I accidentally hit submit. I'm sorry about Benny.

 

I wouldn't wish any form of seizures on my worst enemy.

 

My Dd's doctors have said that her brain is firing from so many different areas, it is difficult to decide what to address first.

Edited July 26, 2017 by unsinkable

[Guest]

No, I think that courts made the decision that GOSH was hoping that they'd make.

I'm so confused. Is there some conspiracy here that I'm missing?

[Daria]

I'm so confused. Is there some conspiracy here that I'm missing?

 

No, most of the time when 2 parties go to court, each of them is hoping for a certain outcome.  In this case, GOSH was hoping that the court would allow them to stop further treatment.  

 

But the court is the one who made the final decision. 

[Corraleno]

This is the statement from the high court today.

 

So the parents are insisting that Charlie be moved to their home, and kept alive there for several days, despite the fact that there is physically no way to get the equipment into their house, which would require round-the-clock monitoring by a team of specialists even if they could get into the house.

 

And they're also refusing any kind of mediation and refusing the option of a hospice, which would give them a private space, away from the hospital, where they and their family could spend time with him. 

 

I don't understand what are they hoping to gain by insisting that the only solution they will accept is one that is physically impossible to achieve, unless they are just trying to draw this out as long as possible to postpone the inevitable. If they are not careful, they could end up with Charlie dying in GOSH when they aren't even present.  :sad:

Edited July 26, 2017 by Corraleno

[itsheresomewhere]

So the parents are insisting that Charlie be moved to their home, and kept alive there for several days, despite the fact that there is physically no way to get the equipment into their house, which would require round-the-clock monitoring by a team of specialists, even if they could get into the house.

 

And they're also refusing any kind of mediation and refusing the option of a hospice, which would give them a private space, away from the hospital, where they and their family could spend time with him. 

 

I don't understand what are they hoping to gain by insisting that the only solution they will accept is one that is physically impossible to achieve, unless they are just trying to draw this out as long as possible to postpone the inevitable. If they are not careful, they could end up with Charlie dying in GOSH when they aren't even present.  :sad:

 

I really hope they have a come to reality moment soon so he doesn't pass without them there.  It sounds like he is on ECMO.

[Guest]

 

So the parents are insisting that Charlie be moved to their home, and kept alive there for several days, despite the fact that there is physically no way to get the equipment into their house, which would require round-the-clock monitoring by a team of specialists even if they could get into the house.

 

And they're also refusing any kind of mediation and refusing the option of a hospice, which would give them a private space, away from the hospital, where they and their family could spend time with him.

 

I don't understand what are they hoping to gain by insisting that the only solution they will accept is one that is physically impossible to achieve, unless they are just trying to draw this out as long as possible to postpone the inevitable. If they are not careful, they could end up with Charlie dying in GOSH when they aren't even present. :sad:

Wait, this is what they want after the press conference where they said they are ready to let him go?

[Guest]

I get it. I'd be knocking out the wall to get the equipment in, than have my final moments with my child be in a hospital, if it was anything but a total emergency. Ugh.

[Corraleno]

Wait, this is what they want after the press conference where they said they are ready to let him go?

 

According the statement released today, the parents have refused every option offered to them by the palliative care team, so the hospital is asking the court to approve the hospice care plan "for as long as that option is on offer," and if the hospice withdraws the offer, then they request that the hospital be allowed to proceed with end of life care.

 

If the court approves the request, then Charlie will be moved to the hospice whether the parents agree with it or not, so at that point their choices are to be with him there or not. And if they try to stall it further with more court action, then they risk losing even the hospice option. 

[Guest]

I get it. I'd be knocking out the wall to get the equipment in, than have my final moments with my child be in a hospital, if it was anything but a total emergency. Ugh.

Really? I'd take the hospice offer. Where my child dies would not be an issue for me.

I almost wonder if they are trying to ensure that he lives until his first birthday?

[Guest]

Really? I'd take the hospice offer. Where my child dies would not be an issue for me.

I almost wonder if they are trying to ensure that he lives until his first birthday?

Okay. I remember fantasizing about just disconnecting the wires and running away with the baby and we were on the path home. Being there was just torture and I felt like they were holding us hostage. For Charlie they actually kind of are.

 

You don't have to agree with me. But I get where his parents are coming from. It's not really up for debate, my feelings are what they are :(

[Guest]

Okay. I remember fantasizing about just disconnecting the wires and running away with the baby and we were on the path home. Being there was just torture and I felt like they were holding us hostage. For Charlie they actually kind of are.

 

You don't have to agree with me. But I get where his parents are coming from. It's not really up for debate, my feelings are what they are :(

Sorry, not debating at all, just stating what I think would be my feelings (but who knows?). My sisters have each lost an infant and neither ever mentioned being upset that their children didn't pass away at home but those were very quick situations.

[Bluegoat]

Who gave the medical opinion?

 

The hospital.

 

Well, doctors.  Not just from the hospital, that was the point of going.

 

Who do you go to when you need a medical opinion, so you can make a decision?

[unsinkable]

Well, doctors. Not just from the hospital, that was the point of going.

 

Who do you go to when you need a medical opinion, so you can make a decision?

Not the court system.

[poppy]

I sure as heck don't blame the parents for feeling whatever they feel .... but shame on the people trying to empower them in that irrationality.   It digusts me.  I think it's truly making it harder for them.  They are pawns in a battle when they need to be taking care of their family.

[Bluegoat]

Not the court system.

 

Exactly.

 

When it is your decision to make, you ask a doctor for a medical opinion.  Maybe more than one.  Then you make the decision.

 

In this case, it was the court's job to make a decision.  The asked many medical experts for their opinions and explanations about the situation.  Then they considered what the experts said, their obligations under the law, and the court made the decision.

Edited July 26, 2017 by Bluegoat

[MinivanMom]

Sorry, not debating at all, just stating what I think would be my feelings (but who knows?). My sisters have each lost an infant and neither ever mentioned being upset that their children didn't pass away at home but those were very quick situations.

 

I think the difference is the friction that naturally comes to exist in a long-term care situation.

 

Thinking just of those I've known in real life, those whose child passed quickly (or was stillborn) often had very positive and supportive experiences with the hospital staff. It wouldn't occur to them to feel upset about passing at the hospital, because no other outcome was possible. I know I had a hugely supportive experience and felt like I was given lots of time and privacy to say goodbye.

 

On the other hand, those with an infant who had a long NICU or PICU stay (talking months vs weeks), often talk about the terrible friction that begins to develop between them and the nurses over just mundane stuff like pacifier use, breast vs bottle, how much time the parent is there (nurses will ding you for being there too much and for being there too little), etc. We're not even talking about situations where there is a conflict over medical care. Once it stretches into months, nurses can get very possessive over those infants and it can get ugly fast if they don't think the parents are making the correct decisions.

 

Add all that friction up over many months of care and multiply it by an international court battle over pulling the plug on little Charlie. I absolutely understand why the parents wouldn't want him to die at Great Ormond Street with a GOSH nurse standing over them the entire time. Wanting several days at home with him before care is withdrawn may not be a reasonable request, but I would hope most people would understand why they want to be able to say goodbye to him in a setting that isn't GOSH or supervised by a GOSH nurse.

[MinivanMom]

When I read the hospital's statement about the obstacles to fulfilling the parents' wishes, what jumped out at me was the statement that a nurse must be present at all times. To me that sounded like the parents would not get anytime to hold living Charlie and say goodbye without a GOSH nurse present in the room. Meaning there would never be a time of total privacy for the parents with Charlie.

 

Am I misreading that? 

[unsinkable]

Exactly.

 

When it is your decision to make, you ask a doctor for a medical opinion. Maybe more than one. Then you make the decision.

 

In this case, it was the court's job to make a decision. The asked many medical experts for their opinions and explanations about the situation. Then they considered what the experts said, their obligations under the law, and the court made the decision.

I read this and I have nothing different to say than I haven't already said.

 

The hospital and doctors made the decision to turn off the vent. The court upheld the decison.

[Bluegoat]

I read this and I have nothing different to say than I haven't already said.

 

The hospital and doctors made the decision to turn off the vent. The court upheld the decison.

 

What do you think the word "decision" means?

[unsinkable]

What do you think the word "decision" means?

what do I think it means? Or what does it mean? Or how am I using it in the context of this situaTion?

 

I haven't been precise with my use of opinion, decision, and other words, I'm sure, throughout this conversation.

 

The doctors and hospital wanted to take steps that would end Charlie's life. His parents didn't want that. The court agreed with the hospital but the court would not have been involved if an impasse hadn't been reached.

[MedicMom]

I do vent transfers. It is incredibly difficult logistically to take someone home on a vent. That is one reason why hospice doesn't deal with vented patients. Some people have home vents, but they are generally otherwise stable and have a long term vent. Home vents aren't appropriate for end of life care.

 

I do understand the desire to have him home. I really do. But from everything I've read, this child is not stable enough for transport to a place he's never been. His care requires a high level of RN training just to stay alive, the kind that is difficult to provide at home. The kindest thing is to remove him from life support and let him pass in his parents' arms.

[MedicMom]

When I read the hospital's statement about the obstacles to fulfilling the parents' wishes, what jumped out at me was the statement that a nurse must be present at all times. To me that sounded like the parents would not get anytime to hold living Charlie and say goodbye without a GOSH nurse present in the room. Meaning there would never be a time of total privacy for the parents with Charlie.

 

Am I misreading that?

I doubt a nurse has to be standing right there, but his level of care needs a nurse to be on the premises. There are vent settings to monitor, intravenous drip, etc.

[Bluegoat]

what do I think it means? Or what does it mean? Or how am I using it in the context of this situaTion?

 

I haven't been precise with my use of opinion, decision, and other words, I'm sure, throughout this conversation.

 

The doctors and hospital wanted to take steps that would end Charlie's life. His parents didn't want that. The court agreed with the hospital but the court would not have been involved if an impasse hadn't been reached.

 

A decision means the person or group gets to decide on a course of action.

 

Normally, doctors get to recommend a course of action, give an opinion.  The patient gets to decide.

 

In some cases, if the doctor feels that the decision of the patient is going to be a serious breach of ethic, the doctor can refuse to be involved.  But they can't usually impose an action on a patient.  Sometimes there are some grey areas, but that's the principle.

 

With a child, its the parents who normally have the right to make the decision are the parents.  But - they don't have that right if it is clearly againt the best interests of the child.  In that case, the right to make the decision goes to the court, not the doctors or hospitals.  The court becomes the guardian of the child for the purpose of the decision.

 

Words matter.  People are saying the court made the decision because it is true.  If you weren't using the words in a precise way, why are you arguing about it?

[Corraleno]

The hospital and doctors made the decision to turn off the vent. The court upheld the decison.

 

If two people both want full custody of a child, the court may appoint a guardian ad litem (GAL) to represent the interests of the child. The GAL looks at all the evidence, consults with experts, and tells the judge what he/she believes to be in the best interests of the child. If the GAL says it's in the child's best interests to live with Parent A, and the judge agrees and awards custody to Parent A, then you can't claim that Parent A "decided to award themselves custody." Parent A may have gotten their preferred outcome, but the decision was made by the judge, on the basis of the opinion of the GAL and the evidence from experts.

 

The same is true in Charlie's case. If the GAL (or whatever the equivalent is in the UK) appointed by the court to represent Charlie's interests had looked at all the evidence and said that he felt it was in Charlie's interests to go to America for experimental treatment, then the judge would have ruled in the parents' favor. The decision is absolutely 100% made by the judge, with a neutral party (the GAL) appointed to represent the child.

 

If the hospital had just turned the ventilator off one day, against the parents' wishes, with no other input, then you could say it was the hospital's decision. But that's not what happened. It's was the hospital's opinion that this would be best for Charlie, but it was the judge's decision.

Edited July 26, 2017 by Corraleno

[unsinkable]

A decision means the person or group gets to decide on a course of action.

 

Normally, doctors get to recommend a course of action, give an opinion. The patient gets to decide.

 

In some cases, if the doctor feels that the decision of the patient is going to be a serious breach of ethic, the doctor can refuse to be involved. But they can't usually impose an action on a patient. Sometimes there are some grey areas, but that's the principle.

 

With a child, its the parents who normally have the right to make the decision are the parents. But - they don't have that right if it is clearly againt the best interests of the child. In that case, the right to make the decision goes to the court, not the doctors or hospitals. The court becomes the guardian of the child for the purpose of the decision.

 

Words matter. People are saying the court made the decision because it is true. If you weren't using the words in a precise way, why are you arguing about it?

Yes, words matter.

 

I'm not arguing.

 

I'm imprecise bc I'm human and I didn't carefully consider each word I wrote.

 

In my opinion, the responsibility for what has happened lies with what the doctors recommended.

[Corraleno]

In my opinion, the responsibility for what has happened lies with what the doctors recommended.

 

IMO a lot of the responsibility for what happened lies with the American doctor who gave the parents false hope claiming his treatment could help Charlie, when that treatment had never been tried on anyone with Charlie's disease (not even on mice) and the doctor had no idea how severe Charlie's issues were. Once he actually examined Charlie and saw how severe the problem was, he changed his mind. I think he was extremely irresponsible and greatly complicated a situation that was already heartbreakingly complex.

[unsinkable]

IMO a lot of the responsibility for what happened lies with the American doctor who gave the parents false hope claiming his treatment could help Charlie, when that treatment had never been tried on anyone with Charlie's disease (not even on mice) and the doctor had no idea how severe Charlie's issues were. Once he actually examined Charlie and saw how severe the problem was, he changed his mind. I think he was extremely irresponsible and greatly complicated a situation that was already heartbreakingly complex.

Yes, I agree.

[itsheresomewhere]

IMO a lot of the responsibility for what happened lies with the American doctor who gave the parents false hope claiming his treatment could help Charlie, when that treatment had never been tried on anyone with Charlie's disease (not even on mice) and the doctor had no idea how severe Charlie's issues were. Once he actually examined Charlie and saw how severe the problem was, he changed his mind. I think he was extremely irresponsible and greatly complicated a situation that was already heartbreakingly complex.

I agree.

[melmichigan]

I get the impression that things are being further complicated because the length of time that the family is requesting they continue to keep Charlie on a vent is changing.  It started that they wanted to keep him at home, or as a last resort in hospice, for a "few days" because transferring him and removing him from the vent within hours would be to difficult for them.  Today the statement was for "a week".  I think there is some honest concern on the part of the medical community that they will have him transferred and the new institution or doctors could be in the middle of a battle to finally turn of the vent. It's already a media circus, and I could sadly see it getting worse in that situation.

Edited July 26, 2017 by melmichigan

[Corraleno]

I get the impression that things are being further complicated because the length of time that the family is requesting they continue to keep Charlie on a vent is changing.  It started that they wanted to keep him at home, or as a last resort in hospice, for a "few days" because transferring him and removing him from the vent within hours would be to difficult for them.  Today the statement was for "a week".  I think there is some honest concern on the part of the medical community that they will have him transferred and the new institution or doctors could be in the middle of a battle to finally turn of the vent. It's already a media circus, and I could sadly see it getting worse in that situation.

 

Yes, I think one of the reasons they oppose the hospice is that the hospice is not equipped for long-term care, so once he is transferred, they will  have a day, not multiple days or weeks. At that point they can't continue to drag it out with legal challenges because the hospice doesn't have the staff or equipment to keep him alive. As I understand it, while he is being moved and while he is in the hospice, the care will be managed by a specialist transfer team, and once the transfer team leaves, there is no option but to turn off the ventilator.

[melmichigan]

Yes, I think one of the reasons they oppose the hospice is that the hospice is not equipped for long-term care, so once he is transferred, they will  have a day, not multiple days or weeks. At that point they can't continue to drag it out with legal challenges because the hospice doesn't have the staff or equipment to keep him alive. As I understand it, while he is being moved and while he is in the hospice, the care will be managed by a specialist transfer team, and once the transfer team leaves, there is no option but to turn off the ventilator.

I think you are correct.  The Daily Mail is quoted, "A lawyer in the couple's legal team said discussions about mounting an appeal against Mr Justice Francis's decision not to allow more time were taking place." They went on to say that British hospices aren't licensed or insured to keep someone in Charlie's condition overnight, which was information that I wasn't aware of in comparison to the US.

 

 

 

Edited July 27, 2017 by melmichigan

[Guest]

Oh man. Those poor parents. I was hoping they could put together a private care team so they could have more than a few hours with their baby in hospice.

I know. It's just awful. My husband admitted to me last night he had to stop reading any headlines or articles on the story a month ago because he couldn't handle it emotionally. I was shocked, he is not a sensitive or emotional man but it just hit way close to home way too soon for him too.

 

I really hope the couple comes out stronger on the other end of their grief. In terms of relationship this has to be such a struggle to weather, and losinng your baby AND significant other is a double blow that's all too common. Prayers and hugs for them.

[Daria]

I can understand this family's wish to bring him home, but it seems like that just isn't realistic.

 

I'm surprised, however, that someone else hasn't stepped forward to donate the use of a house that could allow the vent to enter.  It wouldn't be "home", but it might give them a tiny bit of privacy and a home like setting, and it seems that it would address the issue of the hospice insurance and liability, and also the issue of not being able to get the vent up the stairs and through the door.  It also seems like the family has the money to hire round the clock nurses, which would address another issue.

 

I'm not saying that this would address all of GOSH's concerns, but I'm surprised it hasn't been raised as an option.

 

I hope they find a way to bring this family a tiny bit of privacy and peace at this horrible time.  

[Bluegoat]

Yes, words matter.

 

I'm not arguing.

 

I'm imprecise bc I'm human and I didn't carefully consider each word I wrote.

 

In my opinion, the responsibility for what has happened lies with what the doctors recommended.

 

Well, you keep saying you don't understand why we all said the court made the decision.

I don't understand the bolded.  The doctors aren't responsible for his condition.  They aren't going to suggest something they think will be cruel to the patient.

[unsinkable]

Well, you keep saying you don't understand why we all said the court made the decision.

I don't understand the bolded. The doctors aren't responsible for his condition. They aren't going to suggest something they think will be cruel to the patient.

I didnt say they were responsible for his condition. I said they were responsible for this situation...The situation we were talking about was the recommendation to pull the vent and give palliative care.

[Arctic Bunny]

what do I think it means? Or what does it mean? Or how am I using it in the context of this situaTion?

 

I haven't been precise with my use of opinion, decision, and other words, I'm sure, throughout this conversation.

 

The doctors and hospital wanted to take steps that would end Charlie's life. His parents didn't want that. The court agreed with the hospital but the court would not have been involved if an impasse hadn't been reached.

I am so very hesitant to jump in here!

 

The doctors and hospital don't want to take steps to end Charlie's life. Without intervention, he would have died a long time ago. And despite the intervention that has postponed his inevitable death, his body has continued to deteriorate.

 

It's a horrible situation for all involved. Just heartbreaking. But postponing the inevitable does not make it any easier, nor does it change the outcome.

[unsinkable]

I am so very hesitant to jump in here!

 

The doctors and hospital don't want to take steps to end Charlie's life. Without intervention, he would have died a long time ago. And despite the intervention that has postponed his inevitable death, his body has continued to deteriorate.

 

It's a horrible situation for all involved. Just heartbreaking. But postponing the inevitable does not make it any easier, nor does it change the outcome.

I worded that poorly. You're right. At this point, the doctors want to stop the extraordinary measures that are keeping Charlie alive.

[wonderchica]

The article I read this morning stated the parents have now agreed that Charlie won't be going to their home. The judge ordered he be sent to hospice if the parents and hospital can't agree on a plan for hospice or hospital.

 

I feel truly, deeply sorry for the parents and Charlie. I wonder if all the media/social media attention has hurt them more than it helped, though. I have seen people in my own life who had children who were terminally ill who gathered quite a following on social media. In some ways it bolstered the parents' spirits, but at the same time they were being "supported" by people who didn't truly understand the child's medical condition and made outlandish suggestions disguised as "support". I think of one poor woman who had followers upset at her daily about the decisions she made for her child. Her child was not going to live, but one woman in particular was constantly harassing her, telling her she KNEW if she would just keep her baby on life support she would fully recover. Telling her when she chose to turn it off that she was "sobbing" over how the mother was "starving her child to death". This was a newborn with very little brain matter, who never opened her eyes or moved. The mother's followers pepped her up for a long time until she realized her child wouldn't survive; then many of them crucified her. Social media is a tricky thing.

[PinkyandtheBrains.]

I didnt say they were responsible for his condition. I said they were responsible for this situation...The situation we were talking about was the recommendation to pull the vent and give palliative care.

 

They are why he was even still alive. They, as they are trained to do, recognized when its the end. The hospital doesn't want him to die. No one does. NO ONE wants this child to die.

 

 

 

Signed,

 

Member of the maligned like brigade.

 

 

Clicking like is better than just reposting the same thing over and over.

[unsinkable]

They are why he was even still alive. They, as they are trained to do, recognized when its the end. The hospital doesn't want him to die. No one does. NO ONE wants this child to die.

U

 

 

Signed,

 

Member of the maligned like brigade.

 

 

Clicking like is better than just reposting the same thing over and over.

No one wants him to die in the sense that no one wants anyone to die, and I think humans especially don't want babies and children to die.

 

But Charlie is so sick, he cannot live. And the questions are...now...how, and where and when he is going to die.

Edited July 27, 2017 by unsinkable

[Bluegoat]

I didnt say they were responsible for his condition. I said they were responsible for this situation...The situation we were talking about was the recommendation to pull the vent and give palliative care.

 

Couldn't you say the parents are responsible for refusing to accept their child is not going to recover?  I mean, that seems unkind and most people wouldn't put it that way, but it's just as true as whet you have written.

[Bluegoat]

The article I read this morning stated the parents have now agreed that Charlie won't be going to their home. The judge ordered he be sent to hospice if the parents and hospital can't agree on a plan for hospice or hospital.

 

I feel truly, deeply sorry for the parents and Charlie. I wonder if all the media/social media attention has hurt them more than it helped, though. I have seen people in my own life who had children who were terminally ill who gathered quite a following on social media. In some ways it bolstered the parents' spirits, but at the same time they were being "supported" by people who didn't truly understand the child's medical condition and made outlandish suggestions disguised as "support". I think of one poor woman who had followers upset at her daily about the decisions she made for her child. Her child was not going to live, but one woman in particular was constantly harassing her, telling her she KNEW if she would just keep her baby on life support she would fully recover. Telling her when she chose to turn it off that she was "sobbing" over how the mother was "starving her child to death". This was a newborn with very little brain matter, who never opened her eyes or moved. The mother's followers pepped her up for a long time until she realized her child wouldn't survive; then many of them crucified her. Social media is a tricky thing.

 

Yeah, I am inclined to think that the social media and attention have made this much worse than it should have.  Coming to a place of acceptance is hard at the best of times, people often need help from counselors, priests, etc, and often it takes a long time after the event.

 

But this seems to be actually working against that.