Baby Charlie Gard's life

Status
Not open for further replies.

VGThuy

Well-Known Member
Messages
41,020
More like no publicity. :shuffle:

How much money was raised for Charlie back in January?

That does not make him suspect. I fact, it could be the opposite. He has his money where his mouth is. Maybe he was trying to help. Maybe helping Charlie would help to pave a break though with this horrible disease.

Is that what this was about? I thought it was about whether it would actually help Charlie. Or single-payer health care. Or the right to life. I forget with all these agendas being pushed through this case. What rights do you think unconscious minors have when to comes to whether they should be experimented on? Do you believe experiments should meet some sort of standard before they are used on patients like Charlie?
 

WildRose

Well-Known Member
Messages
2,754
The US doctor was just looking for a guinea pig to experiment on for research purposes. He knew he wouldn't be able to help him. He should lose his licence to practice medicine before he convinces some other poor family to turn their child over to him. Fortunately the British Courts called his bluff.
 

susan6

Well-Known Member
Messages
4,261
Here is GOSH's statement based on the last ruling:
http://www.gosh.nhs.uk/file/23731/download?token=TWJkSxZu

I am not particularly impressed with the Columbia specialist.

Yeah....in addition to being motivated by greed, it appears that he was cherry-picking data about Charlie's case that favored his treatment.

On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

That is straight-up NOT SCIENTIFIC. You have to consider ALL the data. Yes, some data might be higher or lower quality than other data, but you have to look at it all.

Trump clearly wasn't the only meddling, clueless American to blunder into this situation.
 

Simone411

To Boldly Explore Figure Skating Around The World
Messages
19,062
So! The corrupt American doctor in the screwed up US health system wanted to use Charlie as a guinea pig to line his own pockets, while the GOSH doctors in the UK system wanted to protect Charlie's rights and do what was right be him. What have you to say to this, @AxelAnnie ? @Tinami Amori ? Any here who were trying to act like this was some kind of fault in the UK system?
I'll say this much. I wish the American doctor would have been like the German doctor that helped my cousin while he was at St. Jude Children Hospital. My cousin had a very rare type of Leukemia. The German doctor had invented a special type of machine for bone marrow to go through. It somehow made the bone marrow more compatible for the patient that was receiving it. The German doctor found out about my cousin and wanted to use the machine because he knew it might prolong my cousin's life at least for a little while. The German doctor had no personal gain from it especially with my cousin being at St. Jude.

The only problem was that a special bill had to passed in order for my cousin to be able to have the experimental treatment. It took about 3 or 4 months before the bill passed, but my cousin hung on to life because he wanted the experimental treatment. When the bill was passed, the German doctor was able to use the machine and my cousin's sister had donated the bone marrow. There was success with the experimental treatment. My cousin went into remission for about three months, but it was long enough for him to go home and enjoy a normal life for the small amount of time he had. He had to go back to St. Jude and passed away at the age of 17.

But the most important thing was how compassionate this German doctor was in wanting to try and save the life of my cousin. Because of my cousin taking the experimental treatment, it means that the future of children that get the rare Leukemia may live even longer or possibly going into remission and the cancer never coming back.
 

misskarne

Handy Emergency Backup Mode
Messages
23,450
That does not make him suspect. I fact, it could be the opposite. He has his money where his mouth is. Maybe he was trying to help. Maybe helping Charlie would help to pave a break though with this horrible disease.

Oh puh-lease. :rolleyes:

Blind, dumb, idiot Freddie could tell you that it's obvious the US doctor was just along for the publicity ride, that he was looking at Charlie as a cash cow to line his own pockets. But yeah, go on. You tell me how a doctor who retains a financial interest in the drug, and who kept insisting to the parents that it would work even though he couldn't be bothered to actually examine Charlie or his medical records, and who is now happy to try and throw the blame onto GOSH, is such a great guy.
 

Willin

Well-Known Member
Messages
2,593
The court is now determining whether Charlie can be properly cared for, if he is sent home.

I would totally support this, if it is found to be logistically possible to take him home. Adults who have no capacity to breathe on their own typically die minutes to an hour after ventilator removal depending on their condition. So, if he was taken off the ventilator before going home, they'd have about an hour to get home in the best case scenario. @once_upon could probably give a better estimate of how long a baby in this condition could survive after ventilator removal. Even if the family lives in London, it may not be possible due to traffic/logistics/distance.

On the other hand, you can't just bring a ventilator home - they're too big to fit through most doors and in most vehicles(hospital doors are extra wide). They are also incredibly expensive, so if it gets damaged in transit, the hospital is out a lot of money. Not to mention, you need to sterilize the entire machine between each use, so the sooner they can sterilize it, the sooner another patient in need can use it. If it goes home with the family, who knows how long it will be before the machine can be sterilized.
 

hanca

Values her privacy
Messages
12,547
I would totally support this, if it is found to be logistically possible to take him home. Adults who have no capacity to breathe on their own typically die minutes to an hour after ventilator removal depending on their condition. So, if he was taken off the ventilator before going home, they'd have about an hour to get home in the best case scenario. @once_upon could probably give a better estimate of how long a baby in this condition could survive after ventilator removal. Even if the family lives in London, it may not be possible due to traffic/logistics/distance.

On the other hand, you can't just bring a ventilator home - they're too big to fit through most doors and in most vehicles(hospital doors are extra wide). They are also incredibly expensive, so if it gets damaged in transit, the hospital is out a lot of money. Not to mention, you need to sterilize the entire machine between each use, so the sooner they can sterilize it, the sooner another patient in need can use it. If it goes home with the family, who knows how long it will be before the machine can be sterilized.
The points you raised about the ventilator makes me think that it would be best if he died in the hospital. Not sure if the family would want to risk that their child dies while being transported. At least in the hospital they would have some time with him, rather than rushing somewhere.
 

once_upon

Better off now than 4 years ago? Have TP now
Messages
29,881
Time off a ventilator until cessation of breathing is variable upon many things. What brain stem function is left, the condition of the respiratory muscles - I'm not certain what muscle deterioration is in play (think ALS or Muscular dystrophy). What condition the lungs are in, "stiff" vs "pliable", the stress to the heart muscle prior to and during months of ventilator support and so much more.

Depending upon what ventilator is used, there are portable ones that have been used on some kids I took care of. Often that is a process to switch over from large one to portable units. But the units do transport fairly easily, even to school and other activities outside a home or skilled care unit.

Palliative care and hospice can be done in the hospital setting very well. Since baby Charlie had been home for a very short time, apparently a month or so, it might not even feel like "home", and in all likelihood everyone would be more comfortable in the hospital hospice or palliative care units.

Everyone involved in this case will be greatly impacted by his death. Nurses, doctors, respiratory therapists, physical therapists, lab technicians, radiology technicians are all grieving too. It can be a peaceful experience if done right.
 

WildRose

Well-Known Member
Messages
2,754
These people are unbelievable. Apparently they want the hospital to provide paediatric intensive care in their own home. GOSH has other families and critically ill children to worry about. Their demands are ridiculous.

http://www.independent.co.uk/news/u...l-days-home-unlikely-judge-says-a7860101.html
"Charlie's parents want him to be with them and ventilated at home for several days before receiving palliative care," she said. "Above all, Great Ormond Street wants to fulfil that last wish.”
But she said the invasive ventilation that Charlie required was only able to be provided in a hospital setting.
"Those resources cannot be provided by Great Ormond Street to Charlie at his parents' home," she said.
"Great Ormond Street is aware that there are other practical problems, one being that the ventilator does not fit through the front door.”
 

Lorac

Well-Known Member
Messages
5,362
These people are unbelievable. Apparently they want the hospital to provide paediatric intensive care in their own home. GOSH has other families and critically ill children to worry about. Their demands are ridiculous.

http://www.independent.co.uk/news/u...l-days-home-unlikely-judge-says-a7860101.html
"Charlie's parents want him to be with them and ventilated at home for several days before receiving palliative care," she said. "Above all, Great Ormond Street wants to fulfil that last wish.”
But she said the invasive ventilation that Charlie required was only able to be provided in a hospital setting.
"Those resources cannot be provided by Great Ormond Street to Charlie at his parents' home," she said.
"Great Ormond Street is aware that there are other practical problems, one being that the ventilator does not fit through the front door.”

The parents are starting to come over as very entitled and somewhat selfish. I noticed in the past few weeks a few murmuring in article's and commentary that were less than complimentary to them. Calling the GOSH barrister evil when all she was doing was reporting evidence didn't help them. Neither did originally refusing to comment when GOSH had to call the police re death threats only doing so when some on social media asked why they didn't. I get they believe they are doing what they think is right for their child but asking the hospital to let him come home with all that entails for several days is not practical. There are dedicated hospice resources that the hospital are happy to transfer Charlie to which afford privacy for the family in their last few days with Charlie. I hope they can see this and just focus on Charlie.
 

skatefan

Home in England
Messages
7,549
It seems GOSH has also offered quiet hospice care which has been refused. Apparently the family home is in a block of flats across London, and Charlie would need to be hand ventilated up the stairs (or in a lift if there is one) and along corridors to reach their flat. The statement from GOSH said this is likely to cause a big problem for Charlie and a 'disordered' passing.

On top of that, with the threats received by medical staff, who would want to be exposed to verbal abuse and aggressive protestors outside the flats? Having to run that gauntlet to get to work?
 
D

Deleted member 1204

Guest
On the other hand, you can't just bring a ventilator home
There are home ventilators. I have sent home several patients (in the US) on home ventilators over the years, but it is a long, complicated process. First, the insurance company has to agree to pay for it. Then the parents would need to learn how to use it, including trouble-shooting issues that may arise. Discharge planning is on the spectrum of weeks-to-months. This would not be the right setting.
 

Vash01

Fan of Yuzuru, T&M, P&C
Messages
55,319
From what I am reading, it sounds like if the parents agreed to keep Charlie at the hospital, they could get more quiet time with him and perhaps longer too. spending time with him should be the priority but it is hard to convince them in their current state of mind.
 

antmanb

Well-Known Member
Messages
12,639
There are home ventilators. I have sent home several patients (in the US) on home ventilators over the years, but it is a long, complicated process. First, the insurance company has to agree to pay for it. Then the parents would need to learn how to use it, including trouble-shooting issues that may arise. Discharge planning is on the spectrum of weeks-to-months. This would not be the right setting.

There may be home ventilators, however, all of the articles are reporting that the ventilator Charlie needs will not fit through the front door of the family home. What else do they want to be done?
 

WildRose

Well-Known Member
Messages
2,754
They also want Pediatric ICU Physicians and specially trained nurses to donate their time to look after Charlie in their home. They are only thinking of themselves - not what is best for that poor child. All the media attention and support they have received from American right to life extremists has completely gone to their heads.
 

Willin

Well-Known Member
Messages
2,593
http://www.wbur.org/commonhealth/2017/07/25/charlie-gard-nurses
A good article about the struggles of caring for a patient like this from a nursing perspective. I remember my peds teacher talking about this - how many cases like Charlie's there are, and how few nurses want to take on these patients. If anything, the nurses seem to not like those keeping the patients "alive" because the nurses feel awful about caring for the patient and keeping them suffering.
 

Lorac

Well-Known Member
Messages
5,362
I am struggling not to judge them - and I feel guilty about that. I do understand why they are struggling to let go but it is so not fair on the child. No decision as of yet as to what is happening but the judge has told the parents they have to reach agreement with GOSH by 12 noon tomorrow otherwise he will order Charlie is moved to a hospice and the life support being turned off soon after - by soon I assume a day or two. From some of the reports I have read it seems the parents have agreed that Charlie will be moved to a hospice but it seems they are having an issues getting a specialist Dr to be able to be there for the time they want - apparently his parents want him to be kept alive for another week - which actually takes it up to his birthday - 4th August. Some of the GOSH nurses are volunteering to help look after Charlie in his last days - I assume not being paid. That shows how much they all care about him - he has touched so many hearts.
 

AxelAnnie

Like a small boat on the ocean...
Messages
14,463
Lorac - I so hope they give the parent those last few days. So little to ask, and so much to give.
 

skatefan

Home in England
Messages
7,549
Yes, they have apparently put out an appeal for a specialist nursing team, but the last report I heard was that GOSH could not find anywhere willing to take him, hospices are not set up for this kind of medical intensive care and his artificial ventilation would cease once he arrives (which the parents will not agree to as they want him kept alive 'for a few days').
 

AxelAnnie

Like a small boat on the ocean...
Messages
14,463
It is a great deal to ask of the system; and all the personnel who assume personal responsibility for Charlie's care.
Given their prior and recent actions; I doubt that the parents will ever willingly allow "extreme care" to end, of their own volition.
It is 7 days. And, will give them some peace.
 

Tinami Amori

Well-Known Member
Messages
20,156
So! The corrupt American doctor in the screwed up US health system wanted to use Charlie as a guinea pig to line his own pockets, while the GOSH doctors in the UK system wanted to protect Charlie's rights and do what was right be him. What have you to say to this, @AxelAnnie ? @Tinami Amori ? Any here who were trying to act like this was some kind of fault in the UK system?
The accusation against US Doctor has not been proven, first of all. Given the current "partisan environment", an assumption can be made that "crazy media" will make any statements in order to hurt or through a doubt on anything even remotely associates with "Trump" and "conservatives".

And we also don't know if the treatment offer from Italian Medical specialists would work or not work.

There are many issues in this case. Primary ones: medical issues such as child’s condition, availability of drugs and treatment, and legal ones such as role of government vs. parental rights. Then there are bunch of secondary (subjective): politics, intents, religious believes, professional egos, etc.

Even if the US Doctor had financial interests, and Italian Medical Group wanted to go to Heaven, and Pope of Rome wanted Sainthood, and Trump wanted publicity……. It all would have been OK as far as “incentives” IF AND ONLY IF it would have led to positive outcome for the child.

When an issue as such arises, then ALL possibilities and offers of help and support should be examined and considered. In this case AFTER hard debates took place, the decision was made not to proceed. But it does not mean that the issue with this type condition is done with…. Or we would still be curing many cases with bloodletting and leaches.

For the record, Dr. Hirano denies financial involvement…..

http://www.telegraph.co.uk/news/201...denies-financial-link-experimental-treatment/

I don’t know. I only know that such issues should be evaluated to its depth, and motivations why people want to help are secondary to a possible positive result.
 

Lorac

Well-Known Member
Messages
5,362
It is 7 days. And, will give them some peace.

But it is always 'a few more days to say goodbye'. The parents apparently decided last Friday to end their court battle but chose to wait until Monday to announce it as they wanted to spend 'a few more days to say goodbye'. Now they have been fighting to take Charlie home - which was obviously an impossible request considering the impossibility of getting the required equipment needed into their home - but which would allow them to continually push back the time to turn off the life support. If they get their wish to push for several more days they will keep pushing and pushing. Which is why the judge has set 12 noon tomorrow as a deadline to agree the end of life care for Charlie.
 

WildRose

Well-Known Member
Messages
2,754
http://www.telegraph.co.uk/news/201...dge-decide-babys-life-will-end-parents-legal/

"Mr Justice Francis ruled today that Charlie could be taken to a hospice, where he would spend a few hours before his life support is switched off.
The judge extended a deadline until noon on Thursday for Charlie's parents to find a paediatric intensive care team that could look after the little boy around the clock."


Apparently they have nurses who have volunteered, but no Doctor who is qualified has stepped forward, which is not surprising considering the abuse his current doctors have had to take. The Judge wants it done by Friday so they are not going to allow the parents to drag it out.
 
Last edited:
Status
Not open for further replies.

Users who are viewing this thread

Top
Do Not Sell My Personal Information