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Charlie Gard 12

999 replies

muckypup73 · 19/07/2017 11:58

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

OP posts:
TinselTwins · 20/07/2017 22:01

but my uneducated opinion is that either Dr H will have completely backtracked on his opinion regarding being able to make a substantial difference

he doesn't have to backtrack at all
He can still believe that his treatment will pass the blood brain barrier and have some effect on CG whilst ALSO not disagreeing with GOSH re Charlie being so far gone that even "some" improvement not = a quality of life

alcibiades · 20/07/2017 22:09

Writerwannabe83 - I wrote on an earlier thread about a documentary that showed very sick babies and children being transported to PICUs by helicopter, and that was just shortish distances. That documentary showed how complicated the procedure is, and how risky. If there are CA people reading this thread, I hope they take notice of what you’ve explained so they don’t carry on thinking it would be just a matter of hopping onto a transatlantic jet.

I do not think there is any possibility of Charlie being taken anywhere, neither the USA nor Italy. I think there’s a remote possibility that the judge will allow the treatment, but that would have to be carried out in GOSH. I’m not sure that will help C&C because they have lost all trust in the GOSH staff, and I’d imagine they’d feel the need to double-check that the correct medication is given at the right doses and at the right times. And that would have to go on for a minimum of three months, and perhaps longer. So even if they win as regards the treatment, the stress will only continue for them and probably get worse.

sallysparrow157 · 20/07/2017 22:12

it is possible for ventilated children to go home or to hospices for palliative care. It is complex to manage. There are specialist teams who move ventilated children from smaller hospitals to ones with paediatric intensive care units (CATS is the team which covers GOSH). These teams can potentially move ventilated kiddies from PICU to wherever the parents want their child to pass away. They are basically mobile intensive care units so can manage the medical side of things. However, there needs to be a team available (my service has one team to cover nearly 30 hospitals so we would have to get an extra team in for a palliative transfer), that team can only transfer the child and stay for a relatively short time due to other commitments (so the ventilation would be withdrawn reasonably quickly) and the family have to be completely on board with this, and understand that we will withdraw intensive care once we arrive at the destination.

As such, much as I strongly believe that families should have the choice of where their child dies if at all possible, i don't think it would be possible to do it safely in Charlie's case unless his parents completely accept that ventilation is going to stop probably within the hour of arriving home or to a hospice. It would be really high risk for the transfer team - probably just one doctor and one nurse - to be accused of doing things to cause his death, or the parents just not letting it happen. In a hospital there are more people around to support both the family and the medics actually stopping the ventilation and taking the breathing tube out.

DorotheaBeale · 20/07/2017 22:13

either Dr H will have completely backtracked on his opinion regarding being able to make a substantial difference.....

His opinion was always dependent on the degree of brain damage Charlie has. I don't think he ever claimed that his treatment could improve 'catastrophic' brain damage, did he. I suspect he'd been led to believe by CY that Charlie's brain damage is much less severe than is actually the case. That was a large part of the purpose of his visit, for him to confer with the specialists and see for himself, so that he could give an informed opinion on Charlie's specific case.

I feel rather sorry for Dr Hirano; whatever the outcome, someone is going to see him as the bad guy, when all he's ever done is give his professional opinion when he's been asked for it.

TinselTwins · 20/07/2017 22:15

Acrossthepond there was a conversation earlier in the threads about how a "substantial improvement" in scientific/medical/research terms is not the same thing as a "substantial improvement" in life quality.

It could mean anything. Like a measurable cell change but no difference in actual abilities to move/feel etc

or it could mean going from not feeling pain to being able to feel pain.

So, DrH doesn't won't "back track" as what he said is probably accurate in science speak, but it doesn't mean the same thing that it would mean in lay speak, i.e. an improvement for Charlie and his experience of the world

TinselTwins · 20/07/2017 22:21

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:21

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:22

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:22

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:22

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:22

sallysparrow157 thanks for the insight! I couldn't imagine how it was possible but I see it can be done if the transport team withdraw life support as they leave (is that right?)

TinselTwins · 20/07/2017 22:22

Yikes, sorry Blush

flushingthetoiletwithlemonade · 20/07/2017 22:23

@alcibiades

Which documentary was this out of interest?

Ta1kinPeece · 20/07/2017 22:26

Just to pick up on the poster who is defending Medicare
My family member got their kidney transplant through medicare
BUT
Medicare will only fund $24,000 a year for anti rejection drugs.
The cheap drug causes my family member to vomit daily.
The expensive drug ($36,000 per year) would allow them to return to earning money but they have no way of paying for it.
So they are mixing and matching and taking incomplete doses.

Such that the kidney has failed and they are back on dialysis (which costs medicaid more than the difference between the two drugs)
and will never be well enough to work before they die young.

Medicaid does NOT help people get well enough to get back to work.

And medical bills are the single largest cause of bankruptcy in the USA
www.cnbc.com/id/100840148

Charlie would never have got the treatment he has under the US system.

Mommytomylittlestars · 20/07/2017 22:27

Poor baby CG looks very sick. Mum keeps insisting 'he is stable'- I wouldn't describe someone who can't breathe for themselves as 'stable'.
I hope Charlie doesn't have a cardiac arrest and pass away when being actively resuscitated - it would be such a sad way to go.

GabsAlot · 20/07/2017 22:28

in charlis case though without parents being on boar i really cant see judge letting them take hm home who would mak sure it was carried out

i think its best for eveyone if he stays where he is

BoreOfWhabylon · 20/07/2017 22:29

I think there’s a remote possibility that the judge will allow the treatment, but that would have to be carried out in GOSH.

I'm fully prepared to be corrected on this but I don't think a judge can order medics to administer a treatment if it is against their professional judgement and code of ethics to do so.

magicdoll · 20/07/2017 22:32

@TinselTwins

I'm not sure if we do things the same as sally but we also have a team on the NICU where we work who can take a ventilated baby home to pass away there, if that is the parents wishes. It takes a whole lot of time and planning but it's definitely possible. There would be a definite plan in place that life support would be withdrawn that day and our neonatal transport team would transport the baby with a doctor and a nurse to their home and effectively work alongside the parents to make the withdrawal of life support as easy as it could possibly be, making sure to support the parents and keep the baby as comfortable as possible. The medical team would stay until the baby is officially pronounced dead and then it's the parents choice whether they want to keep their baby at home in a cuddle cot (a cold mattress in a Moses basket) or if they'd like us to take them back to the hospital. We then do regular community visits and support the parents throughout the days to follow.

We very much work as a team alongside our parents, especially as such a difficult time. I have no idea how this would work in the case of Charlie with such a broken relationship between the medical staff and the parents.

annandale · 20/07/2017 22:33

I would have thought so too Bore but here the GOSH team have asked the judge to rule on best interests, so perhaps that alters things

BoreOfWhabylon · 20/07/2017 22:33

I'm also pretty sure that if Charlie were to go into cardiac arrest the staff would not attempt resuscitation.

Mommytomylittlestars · 20/07/2017 22:33

I just looked on FB For Laura Gard and saw her thunderclap about the SC judge. Someone had just commented 'But Charlie also has a right to die with dignity' - wondering how long before that person is booted out Hmm

Jux · 20/07/2017 22:35

Could that post be a result of CY trying to get the Judge to go and see CG? I have some faint recollection of her wanting that and him declining - maybe it was mentioned in the first Court Ruling?

11122aa · 20/07/2017 22:36

The Judge did go the other month.

Mommytomylittlestars · 20/07/2017 22:37

I read somewhere (might be one of CY's interviews) that the hospital have cancelled
the DNAR order which was previously in place until the court verdict is reached. If there is no DNAR In place they will have to follow protocol & resuscitate him I presume.

Rachel0Greep · 20/07/2017 22:38

I just keep thinking of that poor little baby. Heartbreaking beyond words. I pity the parents from the bottom of my heart.