Baby Charlie Gard's life

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AxelAnnie said:
It is 7 days. And, will give them some peace.
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The resources are not bottomless. those seven days the nurses could have cared for someone who has a chance to live. If you put resources somewhere, they may be missed somewhere else. How do you measure who needs them more? A dying child to have an extra week (which the child will not even appreciate) or someone else who may need it for survival? But as long as the parents get some peace! The parents that have verbally abused the staff until now, smeared their efforts and hard work in the newspaper... I wouldn't blame the staff if no one volunteered.
 
Tinami Amori said:
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.
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Dr Hirano denies financial involvement? As far as I know, he admitted the financial involvement while being cross-examined at the court, so denying it now to media does not mean much. He either lied to court, or he is lying now. Either way, it doesn't portray him as an honest and decent person.
 
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Willin said:
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.
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As a nurse who spent her career in pediatrics caring for terminal patients, I can testify that it is an extreme toil on one's ability to handle the care demands. I remember Danny, Denise, Kristy, Joseph, Stevie, Jeff, Geoff, Andy, Nick, Amber, Billie Jo, Clint and hundreds more. It wears you out. You cry as to if you can do it tomorrow. You cry for the child, for the parents, scream at God for these things.
the inhumanity of access to healthcare. Joey was brain tumor was not treated until his eye was bulging out like a frog. He didn't have insurance, his parents couldn't afford the office visit. By the time he had medical care in the emergency room, they had to excise his eye, orbit, into the sinus cavity to his mouth. He had a fungal infection. We had to remove packing, irrigate the area for 20 minutes with an anti fungal solution which even tremendous doses of morphine he could be heard screaming for 2 floors. Then we had to administer an antifungal IV med to which he had an anaphylaxis reaction so each dosage we administered epinephrine, airway support, benadryl and crash cart outside the door. Early access wouldn't have changed the outcome but it did impact the severity of the disease and quality of life. We couldn't do more than one day a week

I said it before, there are worse outcomes than death.
 
WildRose said:
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.
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I feel very sad for this little boy. I am not unsympathetic to the parents. They are hurting, but they will help their child a lot by getting along with the system than by resisting it.
 
Tinami Amori said:
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".
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Um, the hospital themselves said that they offered to have him come in January, and he didn't. They also said he never accessed Charlie's medical records. They would know. Or are you accusing the hospital of lying? It's not like they get anything out of this, except death threats from people like you.

And Trump doesn't need anyone to "hurt" him - that orange fcukwit does enough of it to himself.

Tinami Amori said:
For the record, Dr. Hirano denies financial involvement…..

http://www.telegraph.co.uk/news/201...denies-financial-link-experimental-treatment/
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If he's denying it then it means he lied in court.
 
hanca said:
Dr Hirano denies financial involvement? As far as I know, he admitted the financial involvement while being cross-examined at the court, so denying it now to media does not mean much. He either lied to court, or he is lying now. Either way, it doesn't portray him as an honest and decent person.
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As of this early morning (have not checked since) Dr. Hirano (in this article) denied financial involvement at the time of visit to UK. He said he relinquished his interests some time before. So different media posts different information....

http://www.standard.co.uk/news/uk/u...-financial-link-to-experimental-a3596206.html

"Hitting back today Dr Hirano, who works at Columbia University Medical Centre in New York, claims that he now has no investment in the drug Charlie's parents wanted him to have".

Read more: http://www.dailymail.co.uk/news/art...lp-Charlie-Gard-speaks-out.html#ixzz4nz46SnPx
Dr. Hirano works at Columbia University Medical Centre. Seems unlikely, in his position at such a prestigious Centre, he would bluntly lie, and more so, the Administration of the Centre, would not notice or comment on a lie, to preserve its reputation.

Even if Dr. Hirano had financial investments in this treatment, he would be risking a major loss, if the treatment failed or if he made empty promises. He had a lot more to loose being financially linked, than not. I did not find any info that he "lied in court", what i am reading is he was misquoted, as he had some financial involvement, but not now.

Another fact: the Parents contact Dr. Hirano. He did NOT offer, and did not hear about the case prior to that.

Again, if the treatment was possible and worked, financial involvement would not matter. If a person invests in something, and that "something" is for human good, then its not an issue. As i understand from the articles, Dr. Hirano, after looking at the boy's last brain-scan, realized the complexity of the condition and did not insist on the treatment.
... and i am still convinced, that if in place of Trump, there was HRC supporting the boy, with all same conditions Dr. Hirano would have received a different treatment from the "left" and "left media".

The only person i trust and agree with is Boris Johnson/UK... he said "no way this boy can be safely transported to another location outside of UK".

misskarne said:
And Trump doesn't need anyone to "hurt" him - that orange fcukwit does enough of it to himself..
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If a successful man, a billionaire, a fighter who overcame 16 established Republicans and Clinton Dynasty, a US President, with 3 gorgeous wives and many gorgeous successful children, and much more, is an "orange fcukwit"....... then i am just afraid to think what you are.... :D.. besides a bitter powerless person who can only call Trump a "orange fcukwit" and not much more.....
 
Tinami Amori said:
Again, if the treatment was possible and worked, financial involvement would not matter. If a person invests in something, and that "something" is for human good, then its not an issue. As i understand from the articles, Dr. Hirano, after looking at the boy's last brain-scan, realized the complexity of the condition and did not insist on the treatment.
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Brain scans that he'd never bothered looking at before, medical records he'd never bothered looking at before, a child he'd never bothered examining before, but he was busy opining to the sun, moon and stars that his treatment would definitely help Charlie.


Tinami Amori said:
If a successful man, a billionaire, a fighter who overcame 16 established Republicans and Clinton Dynasty, a US President, with 3 gorgeous wives and many gorgeous successful children, and much more, is an "orange fcukwit"....... then i am just afraid to think what you are.... :D.. besides a bitter powerless person who can only call Trump a "orange fcukwit" and not much more.....
Click to expand...

If you think a sexist, racist, homophobic, misogynistic, psychopathic, selfish, egotistical pig who supports sexual assault, has no morals worth a damn, couldn't even run his own businesses properly, had no qualms about having another state interfere in the election result, and thinks that people deserve to die just because they are not rich, is a "good man" and a "good president", then that says a damn sight more about you than it does about me, and none of it good.

A bitter, powerless person? More like someone who actually thinks that all humans deserve rights. Someone who thinks how much money you have or who you work for should have no bearing on your ability to get medical treatment - you should be able to get it regardless. Someone who thinks that everyone should have the same opportunity to succeed, regardless of race, sexuality, gender, or any other factor.

But you - have proven to be one of those people who would say that those with less money deserve to die, because they can't afford care in a fcuked up "health system" that the US has; you have proven to be one of those people who believes that only a certain type of person should have rights.
 
@misskarne you can take my advice or not, certainly your choice but arguing with tinni or annie or others who love Trump and his kind/congress is no longer in my best interest. They don't wish to hear the actual stories or court transcripts or consequences of their beliefs or action. They in fact do not care for anyone except themselves.

When they can show me they spent time caring for these children or others, weeping over their diseases taking pleasure and life from them. When they can show me when they've contributed to healthcare costs for others whose case they claim to champion through the current president, when they can show me an understanding of true clinical trials and research, or sitting at the bedside of someone undergoing extremely researched, not documented outcomes in a lab and watch/feel the test patient's suffering, i'll listen. But until then it's Charlie Brown sitting in the classroom hearing his teacher saying Blahblahblah.

Reality vs assumptions. But then it's just the glasses one wears, theirs or mine.

My heart/brain can't take anymore of the hypocrisy.

So yeah tinni and Annie win.
 
What is the issue that the court is deciding? Is it whether the NHS should pay for services outside of the present hospital, whether the proposed experimental treatment would be in humane, or whether moving Charlie for any reason would mean instant death?

I had read that crowdfunding had raised ~ one million dollars for Charlie to be transported to the U.S.
 
@aliceanne - I believe after the U.S. doctor finally, ethically examined and determined he was either not willing or that Baby was at a point he would no longer consider therapy (after refusing to do these exams in January when first GOSH asked), the parents dropped their efforts.

The queue is where he should, would, could pass in the most humane way. As I understand it parents were requesting to be transported to their home. GOSH has stated the type of ventilator is not conducive to travel to home. Weaning to a more portable one is lengthy and would perhaps be unsuccessful.

Palliative Care/Hospice while being withdrawn from ventilation can be done well even in the hospital.

The parents agreed reluctantly and with much anger, it is in Charlie's interest to do so.
 
I believe it was in late December or January he went into status epileptic seizures. Again, unless you've witnessed an episode or episodes, you cannot understand the depth and severity of brain damage. Or how difficult it is to witness or try to control it.

You know as @Kasey said it's too overwhelming to comprehend. And she has been involved, physically caring, for two people with similar situations in the last two years. People who fcuking don't have a clue need to either spend a week/month doing care or STF up.
 
misskarne said:
Brain scans that he'd never bothered looking at before, medical records he'd never bothered looking at before, a child he'd never bothered examining before, but he was busy opining to the sun, moon and stars that his treatment would definitely help Charlie.
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That's not what happened. Check and read independent (non-partisan) publications.

misskarne said:
If you think a sexist, racist, homophobic, misogynistic, psychopathic, selfish, egotistical pig who supports sexual assault, has no morals worth a damn, couldn't even run his own businesses properly, had no qualms about having another state interfere in the election result, and thinks that people deserve to die just because they are not rich, is a "good man" and a "good president", then that says a damn sight more about you than it does about me, and none of it good.
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:D If you substitute "subject" and "adjectives" in this paragraph, it looks like an old Soviet Banner the Soviet citizens had to carry during parades and recite in classrooms........ against USA.. :lol:
The horrors of life in America.... http://image1.thematicnews.com/uploads/images/00/00/41/2013/10/20/71d352173b.jpg
The only difference is: Soviets were forced to repeat lies..... and you got brain-washed to do it all on your own.... in a free country.... :D

For the record, lets pick one: Trump vs. Clinton on gay rights...
Trump’s own words on same-sex marriage
https://web.archive.org/web/20060507020036/http://donaldtrump.trumpuniversity.com/default.asp?item=121537
https://www.nytimes.com/2016/04/23/us/politics/donald-trump-gay-rights.html
“In any event, I'm very happy for them. If two people dig each other, they dig each other. Good luck, Elton. Good luck, David. Have a great life.”

Clinton’s own words on same-sex marriage
http://www.snopes.com/hillary-clinton-marriage-is-always-between-a-man-and-a-woman/
“Marriage has historic, religious and moral content that goes back to the beginning of time, and I think a marriage is as a marriage has always been, between a man and a woman.”

misskarne said:
A bitter, powerless person? More like someone who actually thinks that all humans deserve rights. Someone who thinks how much money you have or who you work for should have no bearing on your ability to get medical treatment - you should be able to get it regardless. Someone who thinks that everyone should have the same opportunity to succeed, regardless of race, sexuality, gender, or any other factor.
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That's exactly what USA and its legal system and economy has been offering to people for many decades: equal rights and opportunities. But... there is a saying "you can lead a horse to the water, but you can't make it drink".... and "equal rights" do not guarantee equal outcomes.... There is always Venezuela and China for "equal outcomes"....... or not..... because in any system SOME ARE MORE EQUAL than the other..... :D

misskarne said:
But you - have proven to be one of those people who would say that those with less money deserve to die, because they can't afford care in a fcuked up "health system" that the US has; you have proven to be one of those people who believes that only a certain type of person should have rights.
Click to expand...

Ok, i got it...... logic and facts are not your strong points.....:summer:. But you have a lot of talent to become a great Mourner-for-rent.
 
WildRose said:
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.
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:confused: Why do you think the parents of a dying child, would waste any of the precious hours they have left with him reading what is going on in the media in a country on the other side of the Atlantic? I am in the UK and I have literally seen zero reporting here on what American extremists are saying.

The only place I read about that is here on FSU, because i'm seeking it out.
 
Tinami Amori said:
For the record, lets pick one: Trump vs. Clinton on gay rights...
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The quote from Clinton you picked was from 2000. Marriage equality did not exist in any country in the world. It's also telling that you left out what Clinton said after what you quoted.

"Marriage has got historic, religious and moral content that goes back to the beginning of time, and I think a marriage is as a marriage has always been, between a man and a woman. But I also believe that people in committed gay marriages, as they believe them to be, should be given rights under the law that recognize and respect their relationship."

That was about as liberal a position on marriage equality as any politician in the U.S. had at the time. And far more liberal than the average American in 2000.

Donald Trump, who claimed that he would be the most pro-LGBT President ever, has in his first six months in office:

Removed all references to LGBT rights on the White House website

Rescinded protections for transgendered students re bathrooms in public schools

Revoked protections for LGBT workers against discrimination in hiring and employment

Dropped federal lawsuit against North Carolina over its statewide prohibition of LGBT equality

Tweeted that transgender people will not be allowed serve in U.S. military

For the record, I'd pick another topic to compare Clinton and Trump on. Or better yet, as the 2016 election is over, stop debating the merits of the two candidates? :P
 
allezfred said:
Well it does appear a stopped clock is right twice a day re Melanie Phillips. :shuffle:
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I agree - I nearly didn't link the article as I don't usually agree with anything she writes. This time however I thought she hit the nail on the head - as you say - a stopped clock is right twice a day :eek:
 
once_upon said:
As a nurse who spent her career in pediatrics caring for terminal patients, I can testify that it is an extreme toil on one's ability to handle the care demands. I remember Danny, Denise, Kristy, Joseph, Stevie, Jeff, Geoff, Andy, Nick, Amber, Billie Jo, Clint and hundreds more. It wears you out. You cry as to if you can do it tomorrow. You cry for the child, for the parents, scream at God for these things.
the inhumanity of access to healthcare. Joey was brain tumor was not treated until his eye was bulging out like a frog. He didn't have insurance, his parents couldn't afford the office visit. By the time he had medical care in the emergency room, they had to excise his eye, orbit, into the sinus cavity to his mouth. He had a fungal infection. We had to remove packing, irrigate the area for 20 minutes with an anti fungal solution which even tremendous doses of morphine he could be heard screaming for 2 floors. Then we had to administer an antifungal IV med to which he had an anaphylaxis reaction so each dosage we administered epinephrine, airway support, benadryl and crash cart outside the door. Early access wouldn't have changed the outcome but it did impact the severity of the disease and quality of life. We couldn't do more than one day a week

I said it before, there are worse outcomes than death.
Click to expand...
once-upon, you mentioned that this boy had a brain tumor. I just have to ask whether it was benign or malignant. If the brain tumor was malignant, he could have been admitted to St. Jude Childrens Hospital where his treatments would cost the parents nothing. The parents could have also stayed for free at Target House while he was receiving treatments for this brain tumor.

Just like my 17 year old cousin that was treated at St. Jude for the rare Leukemia, my stepmother's son had a malignant brain tumor when he was 14 years old. This was back in 1986, but he was able to go to St. Jude Childrens Hospital for treatment. His life was prolonged for awhile, and he had epileptic seizures because of the brain tumor. Part of the tumor was removed, and he had radiation treatments. He was able to go home for awhile, but the tumor became worse and started growing again. It caused him to go blind. So he had to go back to St. Jude where he died.

This is why I'm wanting to know if that boy's brain tumor was malignant.
 
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