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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Charlie Gard case

999 replies

LovelyBath77 · 06/07/2017 09:41

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

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MissHavishamsleftdaffodil · 07/07/2017 21:06

I'm not sure there is a legal standpoint pop . I suspect reading between the lines of the GOSH statement that this is more about them wanting to try to help the family feel they have been listened to and that every possible avenue has been properly considered and by the independent court not just them. I also wonder if this is the only way GOSH can put out an objective lay out of the facts and decisions in the public arena so people like Trump, the Pope, the Vatican Hospital, CA etc can hear the whole picture and not the one sided view allowed to be shared in the press and social media.

Pop24 · 07/07/2017 21:09

Just read the letter. How come the letter is sent from bambino gesu? The hospital that 2 days ago offered Charlie a place but never mentioned that there were experts in the disease that had come forward? How can there be more experts when the U.S. Doctor was meant to be the world leading expert?!? Please tell me this isn't a faked up letter from the Vatican hospital simply to put another legal challenge to delay the inevitable? Am I seeing this wrong? I hope so...

Bigcomfyknickers · 07/07/2017 21:12

I have been following this thread without posting, but in all of this terrible drama, my main thought has been that if the doctors are sure that Charlie is in pain, are they giving him pain relief? If his organs are failing then surely he must be suffering terribly. The awful thing of course is that he can't express his pain through crying. I feel so desperately sorry for this poor child.

Chestervase1 · 07/07/2017 21:17

As I have previously stated on other threads I don't think GOSH will come out of this very well. I think it is a huge PR disaster for them. I believe they were wrong to fight the parents in Court. This is just my opinion. I understand that the hospital are in receipt of new information regarding proposed treatment. Baby Charlie's health is deteriorating and it is probably too late. Terrible situation for all and my heart goes out to all concerned.

JaneEyre70 · 07/07/2017 21:18

Monday has to see an end to this, the Judge is the same one that passed the wonderful compassionate judgement in April, and I think he had a great depth of understanding of both sides. This has to be a full and final judgement with no leave to appeal and I would imagine that things haven't changed at all from the GOSH perspective. We have to have faith that someone is going to take firm and final control of the situation because any hope of the parents seeing sense has long gone. That interview this morning only confirmed to me the depth of their delusion and desperacy.

JaneEyre70 · 07/07/2017 21:19

desperation even...bloody auto correct.

unweavedrainbow · 07/07/2017 21:20

I'm going to try and explain the "new evidence". Basically, as I said upthread, Charlie is missing the ability to make a molecule that helps us to make new mitochondria. The treatment involved giving him the missing molecule so that he could then do so. His type of mitochondrial depletion syndrome affects his brain, so in order for the treatment to work it would have to cross the blood-brain barrier. No-one was sure that the molecule could do so so no-one was sure that the treatment would work. These mitochondrial disease researchers are claiming that they have (unpublished...) data that shows that the molecule can cross the BBB, making the chance that the treatment would work more likely. This is the "new evidence" that is going to be brought up in court on Monday.
The major problem with all of this is that even if the treatment works (and, remember, it is still experimental and so subject to ethics board/MHRA approval) it is impossible to reverse brain damage. Therefore, even if Charlie improves physically, he will still be brain damaged and so will still require 24/7 care- and no-one knows whether any physical improvement would be sustainable longterm. This brings up big questions around the ethics of experimental treatment: what amount of possible life extension or quality of life improvement is sufficient and what chance should that treatment have of working, and more importantly, improvements being sustained in order for it to be in the patient's interest to "try out" unproven treatments, especially in children who can't consent for themselves? I personally believe that, as Charlie's brain damage is irreversible and therefore the chances of any improvements being both significant and sustainable are tiny if not non-existent, treating him with an unproven treatment would be unethical. I imagine that GOSH are taking it back to court as they have to show that they tried absolutely everything in the face of this media storm. I do believe that the letter is genuine (it will have been checked out by GOSH's lawyers) but that the signatories are researchers rather than clinical doctors. They are unlikely to be aware of how sick Charlie is. Anyway, GOSH have made their own stance very clear-this "new evidence" is irrelevant to Charlie's situation.

annandale · 07/07/2017 21:20

At a guess big it may be that since his responses are essentially nonexistent it might be very difficult to get the dose right? But i don't know.

BoreOfWhabylon · 07/07/2017 21:25

I feel for that poor judge. Reading his original judgement, he comes across as such a compasionate and caring man. Now he is the one who will have to decide whether to overturn his original judgement in the face of this new evidence. If he decides not to, I really fear for his safety.

On the other hand, the drug can be given orally and the only side-effect is reported to be diarrhoea (all in the original judgement). Apparently it would take a couple of months to know whether it is making a difference. Given that it appears that the parents will not accept withdrawing of ventilatory support and the prospect of attempting to do so without their agreement is too awful to contemplate, I think it might be the least worst option to allow the trial to go ahead, assuming the credentials of this new group of experts checks out.

I do not think this course of action is in Charlie's best interests but, as I say, possibly the least worst option.

RMC123 · 07/07/2017 21:28

Chestervase1
I respect your view and I am not trying to be confrontational but when as a doctor you have taken an oath 'to do know harm' and all the evidence is that your actions are doing harm, and you have parents that refuse to accept this, what other course of action was open to GOSH?
I agree it is heartbreaking but surely the fact that these cases are so rare proves the doctors have grave, grave concerns.

SerfTerf · 07/07/2017 21:28

Can anyone explain from a legal standing why it now has to go back to the courts? I assume it's because of new evidence The parents legal team can put another legal challenge? So do gosh have a choice or do they have to go back to court? Struggling to understand

The parents haven't attempted a fresh legal challenge. GOSH have chosen to go back and put the new claims before the court, in an effort to get the same permission to discontinue treatment again, but with the court having heard all of the claims about potential treatment.

They're not being made to do it, but it's wise because it ensures a dispassionate assessment of the new proposed treatments and the new judgement will be based on that, which should bring clarity in the face of wild claims being made on social media and by the parents.

. Are gosh just trying to prove a point that they have always been right?

No they're trying to get confirmation that the court's view remains the same despite new proposals and claims.

It will say in the new judgement what GOSH asked for.

Ceto · 07/07/2017 21:30

Charlie's mother seems convinced that he can't be brain damaged if his brain stem is functioning and that he will therefore recover and live a normal life..

I've dealt with a child with hydranencephaly; he had a functioning brain stem but essentially spinal fluid where his brain should be. He appeared to have minimal sight and hearing, and did breathe on his own. However, he had numerous health problems and in particular severe scoliosis and muscle contractors which meant that he was clearly in pain much of the time. He received absolutely devoted care from a foster parent who had a nursing background, otherwise he would have died; but the plain fact of the matter was that he was going to die by his teens anyway.

That, I'm afraid, is what the reality of living with only a functioning brain stem is. And for Charlie it would be even worse, because he appears to have lost his sight and hearing completely, in addition to his ability to move or breathe. I just don't understand how a loving parent could wish that on their child.

muckypup73 · 07/07/2017 21:30

JaneEyre70, I agree, otherwise where will it end? how much will it cost? how many other lives will be put at risk because of this? does that then mean every cancer patient can cry I have saw a treatment in america, I want it!!! Given that some people in the Uk cannot be treated for cancer because of the postcode lottery and actually looking at it that way makes this what his parents are doing look disgusting.

muckypup73 · 07/07/2017 21:32

Ceto, that is what i find painful, why on earth would you let your child suffer? and then fight for them to suffer more??? its crazy.

BoreOfWhabylon · 07/07/2017 21:35

The judge sqid this at the end of his original judgement

I end with this procedural note: I have already expressed the opinion that I believe that it would, in all cases like this, be helpful for there to be some form of Issues Resolution Hearing or other form of mediation where the parties can have confidential conversations to see what common ground can be reached between them. I believe that that type of hearing, be it Judge led or some other form of private mediation, would have led to a greater understanding between the parents and the clinical team in this case. I am not saying that it would necessarily have led to a resolution, but I think in many such cases it would and I would like to think that in future cases like this such attempts can be made.

Couldn't agree more.

totallyliterally · 07/07/2017 21:36

@muckypup73

From her interview this morning, the parents don't believe that he is in pain of suffering at all.

muckypup73 · 07/07/2017 21:39

2177ee87-4398987d-080ec07e-302278f7-4e7c6c1d-eb2fcf48-6331abcc-5f9f5a99.jpg
GOSH NHS Foundation Trust logo
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 Hospital will continue to care for Charlie and his family with the utmost respect and dignity through this very difficult time.

DarthMaiden · 07/07/2017 21:41

Another excellent and informative post @unweavedrainbow

228agreenend · 07/07/2017 21:42

www.independent.co.uk/Voices/charlie-gard-gosh-great-ormond-street-hospital-life-support-pope-donald-trump-a7827276.html

Apologies if this has been posted already, but it's a good article explaining the situation.

muckypup73 · 07/07/2017 21:42

totallyliterally, if your child cannot cry and they cannot talk, how on earth do they tell you they are in pain??? that must be like living in hell!

228agreenend · 07/07/2017 21:45

Muckypup - I thought the same. The treatment isn't even proven. We have a licensing process in this country to,ensure patiemt's safety isn't compromised, and even then safety isn't ensured. Eg thalidomide, safe on animals, not,on humans.

totallyliterally · 07/07/2017 21:45

@muckypup73 yep, I cannot get my head around how she can believe that. And part of me doesn't think she really does. But was told to say that and the 'he could make a full recovery' by advisors to get public support.

SilverLining17 · 07/07/2017 21:47

CA are blathering on about how they 'don't understand why GOSH are being like this.'
Maybe because they are right and are fight for Charlie's best interests? CA seem to think there's a hidden agenda. It doesn't seem to cross their minds that GOSH haven't altered their standpoint because they are correct.

Lelloteddy · 07/07/2017 21:49

Muckypup, there may be other clinical indicators like increased heart rate. Increased respiratory rate may be another indicator that someone may be in pain or distress but as Charlie has no independent respiratory effort, even that can't be used as an indicator.
His little body is so swollen and oedematous. He looks so desperately ill and yet people seem to be in complete denial.

53rdWay · 07/07/2017 21:56

yes - people on the CA page cooing over how 'chunky' he looks Sad