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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Charlie Gard Case 5

999 replies

LovelyBath77 · 12/07/2017 09:13

A new thread to follow on from the others about this case.

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LovelyBath77 · 12/07/2017 21:58

Hi Muckypup, yes the message was from GOSH. the other thread has closed though, so it is here. (for them to read)

OP posts:
rabbitnothare · 12/07/2017 21:59

Good news for you today @lonelymummy, I had a look at your FB profile when you were getting attacked on the CA page, before I piled in to try and support you when you mentioned it here.

Your dd is a beautiful, gorgeous little girl.
If you need anything, I would like to help somehow, please PM me.

muckypup73 · 12/07/2017 22:01

LovelyBath77, great stuff,because if they are on Ca, and all they see is neagtive,because they willnot let anyoneon there that will question them, at least they know that back in real life on mumsnet there is a balanced veiw.

Sostenueto · 12/07/2017 22:09

This is such a difficult situation. I watched that clip this morning and thought how selfless the mum was. It is so difficult to just 'let go' of a loved one. None of us want to lose a loved one and can go to extraordinary lengths to avoid it, as with Charlie's parents. My family do not want to let go of me either. But I had to sit them down and say " now enough is enough, I don't want further treatment if this last lot doesn't work, please accept my wishes" they were devastated for a while. But after a long time explaining I didn't want to leave them ( I'm a real fighter, 5 times classed as terminal and 5 times recovered and real lucky to have wonderful NHS and pure luck too!) Etc they understood. Both Charlie, the little girl in the clip, and thousands of other people cannot voice their choice. So like the mum in the clip sometimes we have to be truly selfless and put the sick person first, so very, very difficult to do. We would not let an animal suffer would we?
But, we also have to be very careful at what we think is a life not worth living to what is a life worth living. This is the bit I find difficult. I know if I develop dementia or I lose my mind then I definitely won't want to go on. But. Physical disability I might carry on (and have carried on) with even suffering a great degree of pain. That's my red line. Other people have different red lines and this is where the courts come in. In reality Charlie's parents could only go this way, unable to let go, their red line not like others and a child who cannot voice his red line. Such a heartbreaking decision which must be made either way, outcome awful, inevitable death now or down the line. I know one thing, I don't envy anyone who has to make that decision. But we must tread a straight path both morally and ethically about what that red line for someone is.

Lelloteddy · 12/07/2017 22:11

Lovelybath-fast moving thread but I've bumped the second GOSH support thread for you to post the reply on if you want?

Cococrumble · 12/07/2017 22:12

Flowers for lonelymummys tiny dancer

LovelyBath77 · 12/07/2017 22:13

Will do, I didn't realise they had another one going.

Just copying the statement from the GOSH FB page with regard the hearing tomorrow.
Great Ormond Street Hospital for Children has today applied to the High Court for a fresh hearing in the case of Charlie Gard in light of claims of new evidence relating to potential treatment for his condition.
We have just met with Charlie’s parents to inform them of this decision and will continue to keep them fully appraised of the situation.

Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment.

And we believe, in common with Charlie’s parents, it is right to explore this evidence.

Great Ormond Street Hospital is bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere.

This ruling has been upheld by the Court of Appeal, the Supreme Court and the European Court of Human Rights.

It has also been supported unequivocally by some of the world’s most distinguished clinicians and scientists.

The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and for his clinicians to provide him with palliative care only.

The ruling of Mr Justice Francis states: “It is lawful, and in Charlie’s best interests not to undergo nucleoside therapy, provided always that the measures and treatments adopted are the most compatible with maintaining Charlie’s dignity.”

Great Ormond Street Hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence.

It will be for the High Court to make its judgment on the facts.

Charlie’s condition is exceptionally rare, with catastrophic and irreversible brain damage.

Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified.

Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.

Our view has not changed. We believe it is right to seek the High Court’s view in light of the claimed new evidence.

Our priority has always been, and will always be, the best interests of Charlie Gard.

But our care and compassion also goes to the loving families of each and every one of the children we look after. We strive to ensure we give them limitless support at these most difficult of times.

We will always, under all circumstances, respect the confidentiality of our patients and their families.

At Great Ormond Street Hospital, we endeavour to provide the best possible medical care for every single child we treat.

It is why we are recognised as one of the world’s leading children’s hospitals, employing the most skilled and caring doctors and nurses who are absolutely dedicated to their patients.

We are proud of our colleagues, and proud of the work that they do.

We are also immensely proud of the public support we have earned over the generations. We respect it greatly and know how precious it is.

The very last thing we want is for a patient to suffer, and our devoted medical teams do their very best day in, day out, for the children under their care.

We respectfully acknowledge the offers of help from the White House, the Vatican and our colleagues in Italy, the United States and beyond.

We would like to reassure everyone that Great Ormond Street Hospital will continue to care for Charlie and his family with the utmost respect and dignity through this very difficult time.

OP posts:
muckypup73 · 12/07/2017 22:14

Sostenueto, that is a very balanced post.

PunnetSquare · 12/07/2017 22:14

This reply has been deleted

Message withdrawn at poster's request.

LovelyBath77 · 12/07/2017 22:14

That is dated 7th July but referring to tomorrow's hearing.

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muckypup73 · 12/07/2017 22:15

And, Sostenueto, well done you, for telling your parents exactly what you want, andof course they would have found it heart breaking but at the same point, they need to realise that setting your free, means more to you,even though they will suffer,what a brave post x

Sostenueto · 12/07/2017 22:16

Lonelymummy I am rooting for you and your darling. Bear xxxxxxxxxxxxxxxxx

LovelyBath77 · 12/07/2017 22:17

I guess I think, we all as parents feel differently about it but overall it's important to listen to others like the doctors and the other parent, and of course, the child (if they are able) and there is no right and wrong way to think about it. Every case is individual and must be so difficult to judge when is the right time to let go.

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Sostenueto · 12/07/2017 22:17

My daughters muckypup (passesGin) Grin

LetsGoFlyAKiteee · 12/07/2017 22:17

I know people read what they want/see what they want but how can anyone read that statement and jump to the conclusion they want to murder him or doing this cause it benefits them?

Sostenueto · 12/07/2017 22:18

MuckypupFlowers

cheeseandvino · 12/07/2017 22:18

Marking place

Rachel0Greep · 12/07/2017 22:19

@Sostenuto thanks for that post. I cannot even imagine what it is like to be in your position.

FWIW, I thought your earlier post made complete sense Flowers and I could see exactly where you were coming from.

Rhodiolia · 12/07/2017 22:20

The C Army may fade away after he passes, but they will leave behind a wave of compassion fatigue that will affect many others. All this energy, money and focus on Charlie will mean that the other (thousands probably!) families who are in the same or worse dire straits than his family will be neglected or face indifference to their plight. Charlie is just as worthy as Lonelys beautiful DD, my nephew and every other child who is suffering from a life limiting condition yet all the focus and drive is on Charlie. This is what doesn't sit right with me.

LovelyBath77 · 12/07/2017 22:21

Sostenueto I'm glad your family understood in the end. With mine there is no more treatment and am at stage of them saying they can try with a life saving op at the stage it becomes life threatening again (have had several ops which have been life saving already) There's nothing preventative they can do. I had some in the family not accepting and saying it was giving up, (there is some experimental surgery in Germany some patients have done through fundraising) the consultant agrees and understands. It is helpful when the medical staff are supportive of your decision as well. Sometimes there are no options left, or the ones which are won;t work, and it helps for them to be frank about that. Kind thoughts

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MommaGee · 12/07/2017 22:22

Sostenueto I don't think its ok to leave a child with a disability than can be treated and I think its awful that after having a first child with tt18that she hasn't taken up genetic counseling. I cab only assume she has some sort or partial or mosaic t13 or something for her to have multiple babies with Patau Syndrome - that kind of occurance is very rare. I do think she should seek help in having a health pregnancy rather than having baby after baby with a high likelihood of dying.

If I seem a bit grrrr its that one of my fellow NICU moms had twins, her daughter had Patau Syndrome and died after a few minutes. She has posted a few photos of her, on her birthday etc. And is heartlessly imo told by family etc to get over it, that no one wants to see it etc. I also have a baby with mosaic t18 and have lots of FB friends with t13 and t18 who have fought hard for their childrens lives, children who do survive and who are compatible with life.

Anyway I just wanted to explain my ranty pants as i do see what you meant wasn't the same as what I was being protective over.

Took so long to reply as I just had to do a finked up version of 3 little pigs with Bertie, Gertie and Bertie

muckypup73 · 12/07/2017 22:22

Sostenueto, sorry luv, and thanks xxx

Dustbunny1900 · 12/07/2017 22:24

One of the CA members , who appears to be vocal on that page " what is GOSH??" face palm. Shows you just how much they actually care about this case, they can't even be bothered to educate themselves on the simplest facts ..let alone read the court judgment or opinions of world doctors.
Then there's all the talk about America: World Police charging in after making them permanent residence to scoop charlie up from the evil hospital. 😂

Sostenueto · 12/07/2017 22:25

Thanks all for kind posts xxxxFlowers

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