UN Charlie Gard, 10 months old, is denied experimental treatment in US - Time for some depression

Meet Charlie.

http://www.bbc.co.uk/news/uk-england-40206045

Charlie has a very rare genetic condition that effectively confines him to a vegetative state. He cannot even breathe without the help of a machine. His parents wanted to take him to the US for some experimental therapy that MIGHT have been able to save him. The hospital he is in disagreed. So they took this case to the Supreme Court.

The Supreme Court has rejected an appeal by the parents of sick baby Charlie Gard, over plans to take him to the US for treatment.

Chris Gard and Connie Yates want the 10-month old, who suffers from a rare genetic condition, to undergo a therapy trial.

His mother broke down and screamed as the decision was announced.

Charlie can stay on life support for 24 hours to give the European Court of Human Rights a chance to give a ruling.

He has been in intensive care at Great Ormond Street Hospital since October last year.

The hospital said therapy proposed by a doctor in America is experimental and that Charlie's life support treatment should stop.

Charlie has mitochondrial depletion syndrome, a rare disorder that affects the genetic building blocks that give energy to cells.

The family division of the High Court agreed two months ago that the hospital could withdraw Charlie's life support.

His parents have raised more than £1.3m through an internet appeal, in the hope they could take him to America for an experimental treatment.

Specialists in the US had offered a therapy called nucleoside.

Charlie's supporters gathered outside the court ahead of the hearing.

Holding pictures of the 10-month-old they chanted 'Save Charlie Gard' and "give him a chance".

Inside his parents waited for the decision. This is the final court in the UK able to hear their case.

Justice Lady Hale began by praising their devotion, as parents we would all want to do the same she said.

But as judges and not as parents they were concerned with the legal position and the proposed appeal she said was refused.

Charlie's mother Connie left the court wailing and shouting "they've put us through hell".

Chris, Charlie's father, held his head in hands and cried.

This may though not be the end. They want to try and take their case to the European Court of Human Rights.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

"Charlie's condition affords him no benefit."

Following the ruling Ms Yates screamed outside court: "How can they do this to us?"

"They are lying. Why don't they tell the truth?", she said.

Charlie's life support machine will continue until Friday at 17:00 BST to give judges in Strasbourg, France, time to look at the case, the court said.

The case is now going to Strasbourg to be heard by the ECHR. Charlie will be kept on life support for another 24 hours to give the judges there time to think about the case.

This is sad, but I think the correct decision would be to shut off that life support and end this poor child's suffering.

 

[Lackadaisy]

Babies carry disease

babies are a disease

 

[ICametoLurk]

Die Crotchfruit.

 

[Captain Pipsqueak]

But of course!

On the bright side, he doesn't have to worry about ever having ugly teeth, so that's at least one point in his favour.

 

[AnOminous]

I have never really understood why death panels employed by Aetna or Anthem are sooooo much better than death panels employed by the NHS? Either way people are dying.

Those death panels don't actually have guys with guns to prevent you, forcibly, from spending your own money in a futile attempt to save your child's life.

 

[escapegoat]

Those death panels don't actually have guys with guns to prevent you, forcibly, from spending your own money in a futile attempt to save your child's life.

The US has CPS for that. If you wanna do something fucknuts stupid to your kid, or if you give a doctor good enough reason, a court can allow medical personnel to refuse to hand your kid over. We have our very own Charlie Gards.

(We also have a higher infant mortality rate, in general. We don't actually give a shit about babies, here. But, commerce... that'll get people het up. How dare these people be told they cannot spend their money, is what a lot of the outrage appears to actually boil down to.)

 

[CWCissey]

The US has CPS for that. If you wanna do something fucknuts stupid to your kid, or if you give a doctor good enough reason, a court can allow medical personnel to refuse to hand your kid over. We have our very own Charlie Gards.

(We also have a higher infant mortality rate, in general. We don't actually give a shit about babies, here. But, commerce... that'll get people het up. How dare these people be told they cannot spend their money, is what a lot of the outrage appears to actually boil down to.)

Something I don't get as I'm hearing rumblings that the money raised went into Connie Yates' bank account rather than an independent trust account (Is the money just resting there?) as well as this gem from her (witnessed by a journalist no less) after being told that having Charlie die at home is kind of impossible as after you turn the machines off, he's gone.

https://twitter.com/Vinny_LBC/status/889854878369148929

 

[Trombonista]

Something I don't get as I'm hearing rumblings that the money raised went into Connie Yates' bank account rather than an independent trust account (Is the money just resting there?) as well as this gem from her (witnessed by a journalist no less) after being told that having Charlie die at home is kind of impossible as after you turn the machines off, he's gone.

https://twitter.com/Vinny_LBC/status/889854878369148929

I'm assuming the machines keeping him alive cannot be moved to his family's home. Is this correct?

 

[CWCissey]

I'm assuming the machines keeping him alive cannot be moved to his family's home. Is this correct?

I'm no medical technician, but I would imagine moving Charlie would involve unplugging the machine at some point.

 

[Mesh Gear Fox]

I'm assuming the machines keeping him alive cannot be moved to his family's home. Is this correct?

The home could easily support a ventilator for him. I believe the problem is that he's extremely ill. His parents have said they don't think he'll make it to his first birthday, which is on August 4th. That is only a little over a week away. So, it's doubtful that he could survive outside the ICU that he's been in since October.

 

[Caddchef]

I read that the biggest problems with Charlie going home is partly his parents expect the GOSH to provide a team of specialists including consultants to hang around their pad making sure Charlie doesn't die before the machines are turned off, forgoing their regular responsibilities of curing sick children, and a lot of the equipment required to keep him alive literally won't fit into their house, hell you should have seen the trouble i went through to get a large armchair through my front door.

Something I don't get as I'm hearing rumblings that the money raised went into Connie Yates' bank account rather than an independent trust account (Is the money just resting there?) as well as this gem from her (witnessed by a journalist no less) after being told that having Charlie die at home is kind of impossible as after you turn the machines off, he's gone.

https://twitter.com/Vinny_LBC/status/889854878369148929

I have a feeling this won't be the last thread we have on the parents.

 

[Sable]

Babies carry disease

Babies grow up to be lolcows.

 

[WW 635]

Babies grow up to be lolcows.

This one probably had more brain function than most of our lolcows though

 

[mulliganfarmer]

Something I don't get as I'm hearing rumblings that the money raised went into Connie Yates' bank account rather than an independent trust account (Is the money just resting there?) as well as this gem from her (witnessed by a journalist no less) after being told that having Charlie die at home is kind of impossible as after you turn the machines off, he's gone.

https://twitter.com/Vinny_LBC/status/889854878369148929

Those aren't rumblings, it's a fact. Someone close to her (her brother, I think) has been passing around her bank details for direct donations for a long time now. Along with Chris' sister selling keychains and air fresheners with Charlie's face on them.

Far be it for me to armchair diagnose anyone, but the parents have struck me as narcissists since day one. Charlie isn't the only incompatible-with-life child ever treated at GOSH, most parents with dying children are capable of listening to advice from the experts and letting their child go in dignity and peace. Charlie's parents appear to have had this idea in their head of what Charlie was going to be like, diagnosis be damned, and they're not accepting any other perspective that doesn't fit this idea. You can see it when they talk about watching Cbeebies with him (despite him being blind and unresponsive), him having a favourite toy (again, blind and unresponsive), ideas of this miracle treatment turning him into a normal boy that plays football (impossible even if the treatment did work, the brain damage is irreversible and they were told this multiple times) and now the idea that he can die at home when he's hooked up to too many machines to be transported safely from the hospital.

I have no doubt they're grieving but it seems like their grief is more for themselves as bereaved parents than for Charlie himself.

 

[Dorsia.Reservation]

his parents expect the GOSH to provide a team of specialists including consultants to hang around their pad

The same people they have been treating like shit,verbally abusing and having their rabid supporters send death threats to!?

Let them take the million + they raised and pay for it themselves!

 

[captn_kettle]

I'm assuming the machines keeping him alive cannot be moved to his family's home. Is this correct?

These things that are keeping him alive are fairly huge. Not to mention the kit that supplies the regular medication, suction machine, ECG machine, pulse and SATS monitor as well as the ventilation machine.

People have said "oh well I know someone who carries around an oxygen tank and they do fine". Problem being is that this is a forced ventilation machine. Charlie's organs have deteriorated so much, he is incapable of taking breaths so the machine forces him to breathe.

I think at the 5 minute mark of not breathing is when you start to incur irreversible brain damage. With the condition he is in now, that would actually render him completely brain dead.

 

[TopCat]

Charlie Gard parents say 'beautiful boy' has died

Charlie Gard, the 11-month old baby at the centre of a legal row over his treatment, has died, a family spokesman has confirmed.
He was moved to a hospice following a High Court ruling on Thursday.

http://www.bbc.co.uk/news/uk-england-london-40752120

 

[Randy Lahey]

F

 

[Lackadaisy]

At least he'll be at peace now.

 

[Johnny Bravo]

Sorry Charlie, at least you won't live to see your parents become lolcows.

F

 

[Beaniebon]

I can't stand parents like this and Gwen Hartley who try to keep their clearly dying (if not nothing but a corpse kept alive by machines), not even there children alive and suffering. Not to a-log but it's inhumane. Let things like this live a short life and focus on comfort, not longevity, and let them slip away when it's time.