Baby Charlie Gard case

[srisky]

Moving him may make the remainder of the Charlie's life more tolerable for his parents but the process may cause suffering for Charlie - possibly lines, tubes, pumps being removed & reinserted into his tiny body. Being moved from hospital to car/ambulance then to home. The change in environment, smells, sounds at home could be distressing for him after so long in hospital.

[uncleglen]

malumbu Wrote:

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> I do some volunteering where transport is often

> provided by the Jimmy Mizen Foundation - a

> teenager sadly stabbed to death ten years ago. It

> makes me sad when I see his face on the mini bus

> but at the same time the family have made

> something good out of this.

> http://forjimmy.org/tag/charity/

>

> How much money is being spent on this case? The

> money could be spent on supporting research into

> the disease or something else to commemorate the

> short life of this poor soul

I agree that the money would be better spent on ensuring the parents have health babies in future now that they know that they are both carriers.

Just to correct you m

(Unfortunately Jimmy Mizen was killed with a glass dish in a bakers shop- the lad that did it was stabbed in prison- a lad I taught when he was 13 and there were concerns raised about him in school at the time....)

[TE44]

Hey loz your right, how weird, it def was not what is coming up now on link, i clicked onto it after

I posted it, whether it was reported wrongly, no surprise there.

srisky If they can move him to a hospice, which has been offered, and from what i read earlier this seemed likely, although It is no longer on link. I can't see how it would be any different.

[TE44]

Loz the story is not on your link but on my link, it is there it states just under the heading the parents have agreed.

[TE44]

Dulwichfox he may not have any concept of surroundings but I believe the bond with his parents is there, if he does not make the journey, then it must be remembered that the reality is death whatever. We do not know once the ventilator is turned off how long Charlie will last. There is an assumption it will be immediately. The things is they cannot say 100% that is how it will be. In a situation like this there needs to be understanding and people who you have good communication with, who respect the family enough to stay in the background unless needed. I have found it is suffice to have a nurse who can administer anything that's needed. This all needs to be discussed beforehand. The time for spscialist has passed.

[Loz]

This seems to be rapidly descending into a horrible farce.

The parents still can't come up with an acceptable plan. They seem to be grudgingly accepting of the hospice, but want the feeding tube to stay in for 'a week or so'. They say they've found a suitable doctor, but there are question marks over his experience in palliative care.

Seems the parents are trying desperately to stretch out the process for as long as possible. Understandable, but is it really in the little one's best interest? I'm not sure it's even in the parent's best interests.

[TE44]

Loz do you have a link please.

[Loz]

TE44 Wrote:

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> Loz do you have a link please.

http://www.bbc.co.uk/news/uk-england-40733491

and

http://www.mirror.co.uk/news/uk-news/charlie-gard-hearing-live-updates-10874485

[TE44]

Thanks Loz

There has been a breakdown with parents and Gosh and there has probably not been a day for a long time when the parents have not felt the fight. Gosh

did say when the parents withdrew there fight for

Treatment that the ventilator would not immediately

be turned off and hoped to give the family some time. Maybe once out of hospital the parents will find peace with there baby and let him go.

[Jules-and-Boo]

it's incredibly painful. I hope they can all find peace.

[uncleglen]

(I've had enough now- it's 'their' baby 'their' fight....).

I dearly hope someone has explained to the parents WHY their baby is so poorly and that they will receive help with conceiving a healthy child in the future. This genetic problem is apparently more common in the Faroe Islands

[Blah Blah]

TE44, it is not in Charlie's interests to move him from pillar to post. He is not aware of anything around him. There is no bond. He has no cognitive understanding. Moving him to the parents house is purely for the parents benefit. There is a huge difference between a hospice and his parents home. A hospice is equiped, and has purpose built facilities and premises. Even the journey there will be very risky. Forced ventilation requires precision and constant monitoring. And the language of the parents is increasingly unfair. Today they claimed GOSH were guilty of brutality in not letting Charlie die at their home. Loz is right. The parents seem to now be dragging things out as long as possible. We would not put an animal through this. Every day that they drag this out, his organs fail a little more. The judge now needs to step in and set a date for the ventilation to be removed, and let this poor child go without any more suffering. And the parents need to accept it.

[flocker spotter]

its his birthday looming, this is significant to them

[TE44]

Blah blah have you rsad the medical reports. Is it any specific scientific reports lead you to believe

He can feel no bond between his parents, yet you believe he can be distressed.

[edcam]

But of no use to the poor child.

flocker spotter Wrote:

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> its his birthday looming, this is significant to

> them

[Blah Blah]

I know enough about the condition to know how impaired his cognitive function is. I have never said the child is distressed. Physical discomfort is not the same thing as cognitive function. For the child to feel a bond, he needs a certain level cognitive awareness, the ability to judge something as 'familiar'. He can not see or hear. Once the RRM2B gene began to irreversably damage his brain, his ability to recognise touch and smell also became compromised. He is also heavily sedated, necessary to have control over the forced ventilation. And that sedation will not be lifted once the ventilation is removed. It is neccessary to ease what follows. All of those things put together, hopefully help you to understand why it really doesn't matter to him where he passes. It is for the parents bereavement this request was made, understandable of course, but the responsibility of the doctors is for the child first. And that includes having control over the final environment.

[solar]

It has just been reported that sadly Charlie Gard has died. RIP.