moneypenny20

Agreed. I'm fairly certain I would put any future quality of life first and I'd certainly trust GOSH but yeah until you're in those shoes....

Jerseygirl

In theory...quality of life of the child concerned...quality of life of siblings or future siblings etc...but until we've walked in the parents' shoes...who knows what we would chose.

Pollyana

That's the saddest thing, he has no quality of life, is only alive because of the machines that are sustaining him, and even if this experimental drug can ease his condition a teeny bit, he still has very little brain function and that is damage which can't be reversed. As you know, GOSH is the best in the world, and if they could do anything for him they would have done it. All they can do now is take the objective view, which Charlie's parents are understandably incapable of.

Jerseygirl

I hear you Poll...but if it were my child I would wrestle with letting him go and trying all avenues possible. I truly don't know what I would do...

moneypenny20

My niece had a premmie in the best neonatal dept for her area. She moaned about their behaviour all the time she and the bub were there, and even more so when she was released but visiting. Nothing but negativity. A year later she was banging on about how great they were. A bit of distance from the scary situation and the brain understands why certain things were done by the experts. It's impossible to be objective when you're hormonal, emotional and in the midst of a nightmare. No one wins in this situation and that includes the staff who are getting abused by complete strangers around the world.

Pollyana

That's it in a nutshell, well put. No-one can be objective when its their child in that situation.And the staff at GOSH are being made out to be the Big Bad Wolf, which is so wrong. Charlie has been there since November - even the hardest hearted nurse on the unit will have become emotionally attached to him to some extent.

BEVS

From where I stand looking in, I have to agree.

Geordie George

Miss Moo spent time in an ICU after she was born. The most stressed I've ever been in my life - and she was in there less than a week. I trusted the doctors implicitly, because I desperately wanted them to keep her alive at all costs (she wasn't ever really in any danger, but what does a terrified brain know?). When the Gorilla was whisked off to ICU after his birth, I was pretty calm; we'd been down this road before. I questioned everything and argued against lots of 'unnecessary' stuff. Two very different experiences. But both made me appreciate how staff do everything they can because (and here's the crucial bit) they don't want your kid to die, either. (It might be because they don't want to be sued, but that's beside the point.) At some point I accepted that they were professionals who knew more about medical stuff than I ever will. If they're saying you need to let this person go, you need to listen to that. Not put your faith in 'likes' on the Internet and unproven miracle-cures. I'd hope my family would tell me that, even if I wouldn't let the doctors convince me because of my reverting to magical thinking.

The poor kid's situation just sounds so hopeless. And certain political elements in the US trying to score points off the back of it is reprehensible.

Jerseygirl

I agree but if it were my child....

BEVS

I'm not making comment regarding the parents understandable longing for their child ( loved one) to be made miraculously somehow well via a therapy trial.

Hell. Any of us that have been given 'the talk' would, over the weeks ,move hell and high water and virtually grasp at any straw to make it not be so. Just not be so. However in the end we are moved by our love to accept an inevitable and to let those we love go with good grace and dignity.

I'm making comment regarding the dreadful circus train as per this by Geordie George.

"And certain political elements in the US trying to score points off the back of it is reprehensible. "

How could these people sink so low as to use these parents and this baby , who is being kept alive artificially, as pawns .

I have to hope that GOSH, this Dr Hirano et al are talking privately with each other for the good of the parents and their terminal baby.

scrubbedexpat099

https://www.usatoday.com/story/news/...ser/491769001/

LONDON — American immigration officials refuted claims by British media Wednesday that a terminally ill 11-month-old British infant received permanent resident status that would allow him to fly to the United State for urgent treatment.

A U.S. congressional committee voted unanimously Tuesday to grant permanent residency to the family of Charlie Gard, who suffers from a rare genetic condition, so he can receive an untested experimental therapy from a New York neurologist. But the bill still needs approval by the full Congress.

The case was thrust into the international spotlight after President Trump and Pope Francis weighed in, saying they favored moving the infant to the U.S. or the Vatican for treatment.

The vote by the House Committee on Appropriations was added to legislation to pay for a wall President Trump wants to build along the U.S.-Mexican border. The procedural vote was lost on several British newspapers, including The Telegraph, which reported the amendment granted permanent residence status.

"We are aware of the amendment and, should the legislation be passed by Congress, stand ready to act as necessary," the Department of Homeland Security said in a statement.

Rete

I agree. He is sick and can visit the US for treatment on a B visa. There is absolutely no need for him to become a US PR other than to get him FREE medical care. Just a bunch of tired old man trying to make themselves look good to the world.

The UK doesn't have the ability to care for his medical condition?

lansbury

It will make no difference at all. If the High Court orders the child remain in the UK anyone attempting to remove him gets arrested.

I assisted the FBI at the Embassy once with a child abduction. A US father living in New York removed his son from the US via Heathrow enroute to Israel without mothers consent. We contacted the High Court and got an order forbidding the child be removed from the UK. When the father went to board the flight to Israel I used the power of arrest I had requested the Judge add to the order to arrest him.

BEVS

The UK and Great Ormond Street Hospital has everything and more for all manner of sick and terminally ill children Rete. They are and have been caring for this wee babe with his medical condition. He is terminal, being kept alive on life support.

The hospital is recognised as a world leader in child health & education.

Here is the page from Great Ormond Street itself. As you can read they have been extensive over this.

The wee babe is in the very best hands possible & all those people involved will be honestly and selflessly looking to the interests of him and also his parents . They will have no agenda but this family in their care.

kimilseung

I dont get what you are saying regarding free care. How will he get free care? The parents have two million pound for his health care, will the US government over look this and give it free?