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AIBU?

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Original poster

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.

OP posts:
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RMC123 · 07/07/2017 19:38

Stopnamechanging that was really helpful. Thank you.
I have just caught up having been at work.
I don't really think that GOSH had any choice but to send this back to the courts in the light of new evidence, however flawed that evidence maybe.
I can't comprehend wanting to give a child who's organs were shutting down, who couldn't breathe unaided, couldn't hear or see, was suffering seizures of up to 8 hours, and who was in likely in pain, but couldn't cry to express it, a drug which hadn't been tested on mice. Presumably have no idea of the potential side effects. And quite possibly he has endured more tests today so they have recent scans etc for court.
I feel for these parents, it hurts me just imagine being in this situation but I feel for Charlie more.

Stopnamechanging · 07/07/2017 19:39

No problem, it was posted by unweavedrainbow and I just went back to find it.

RMC123 · 07/07/2017 19:41

who's - whose!!
Been a long day!

FastAbsorbingCake · 07/07/2017 19:46

@saltandvinegar1 I have to admit the same thought crossed my mind.

3littlebadgers · 07/07/2017 19:46

I found this which is interesting. Various points of view from professionals in related fields.

www.sciencemediacentre.org/expert-reaction-to-the-charlie-gard-situation/

Hulder · 07/07/2017 19:46

JonSnow effectively the blood brain barrier means that many drugs don't pass into the brain.

As Charlie's brain is affected, any drug would have to be able to cross over the blood brain barrier to work on his brain - they don't know if this treatment does or not but clearly some scientists think it might.

Of course even if the drug does cross into his brain, it still has to actually work. And it remains to be seen if it could undo the damage already done - probably not much as the brain isn't very good at repairing itself.

Stopnamechanging · 07/07/2017 19:51

“The reason why these decisions come to the court at all is because parents do not have an absolute right to make medical decisions for their children. Parents will not always make the best choices, but for the most part the state will not interfere or intervene. However, where parents’ decisions run a significant risk of causing serious harm, their decisions should be challenged, if necessary in a court.

This stood out for me from your link badgers

Chestervase1 · 07/07/2017 19:53

Notknown I know what you mean. You don't want to be unkind but I didn't like that last interview on the bed either.

JonSnowsWhore · 07/07/2017 20:25

Hulder so they think it might cross over to his brain but there's still no evidence to show it would actually do anything to his brain? Thank you that clears it up a bit, as I said I just didn't want to judge a situation I didn't understand

DonutCone · 07/07/2017 20:29

I think I realised that the parents had totally lost touch with reality when they talked about needing more time to 'make precious memories'.

Their child is blind and deaf and totally unresponsive. What sort of memories can they possibly be making. He lies in the same bed, day in day out, being kept alive by a machine. These are not memories most people would want to be making more of.

nina2b · 07/07/2017 20:32

Today 19:38 RMC123

"Stopnamechanging that was really helpful.
Thank you.
I have just caught up having been at work.
I don't really think that GOSH had any choice but to send this back to the courts in the light of new evidence, however flawed that evidence maybe.
I can't comprehend wanting to give a child who's organs were shutting down, who couldn't breathe unaided, couldn't hear or see, was suffering seizures of up to 8 hours, and who was in likely in pain, but couldn't cry to express it, a drug which hadn't been tested on mice. Presumably have no idea of the potential side effects. And quite possibly he has endured more tests today so they have recent scans etc for court.
I feel for these parents, it hurts me just imagine being in this situation but I feel for Charlie more."

Couldn't have put it better. It is a horrendous situation all round and the baby at the centre of all of this, lies there unaware. Awful beyond words.

Maudlinmaud · 07/07/2017 20:32

Donut have you seen the video of the parents enjoying a picnic with Charlie? I just saw it today but it's been around for weeks. It is really, really odd.

nina2b · 07/07/2017 20:33

A lot about this is odd.

GabsAlot · 07/07/2017 20:34

we hav animals we let them go when thrs no hope- why cant thy see what theyre doing is for themselves not their son

StiffyByng · 07/07/2017 20:35

darth and stopnamechanging, thank you both so much. Both the charities I linked to are small and rely on support like yours. When children are first given these devastating diagnoses, they are invaluable support for parents.

When I actually went and read the High Court judgment today (had been rather avoiding it to be honest) I noticed that it was mentioned at that point that the treatment could potentially cross the blood/brain barrier. So I'm not entirely sure what the letter of today adds to that, but add my gratitude to unweaved for the post.

DonutCone · 07/07/2017 20:40

Maud yes, it really is very strange.

He is lying there. It looks cold. I just don't see the point in it at all. I feel a bit like they are turning into the parents of Jaxon Buell. You can dangle a baby over the floor, but it doesn't mean they are waking.

Smitff · 07/07/2017 20:41

A PP said this upthread and I agree.

Of course Charlie's parents are in a devastating situation. But there's something that's not quite right. I'm not suggesting anything sinister. I feel that the media attention the parents are seeking goes above and beyond that required for the purposes of advancing their case to ensure the very best for their son, especially in the face of so much, and such strong expert opinion to the contrary.

It's all so very, very sad.

Maudlinmaud · 07/07/2017 20:48

Donut it shocked me. Music blaring and the parents talking into the camera. A really personal, special and rare experience paraded for all to see. That poor child is just a side show. My head is in my hands saying that.

muckypup73 · 07/07/2017 20:49

DonutCone, needing more time for precious memories??? or more time to di television interveiws, write to all sorts of folks? have a facebook funding site as well as the rest??? wheres the memories in all that??

MissHavishamsleftdaffodil · 07/07/2017 20:52

GOSH's statement of 'our position has not changed' says it all really, about what they feel about this treatment, it's potential and what they think the outcome should be.

It seems the only way to handle this mess; to demonstrate they have listened, that every avenue has been objectively and properly considered. I hope the standing ECHR ruling means if it doesn't go the family's way this doesn't have to be dragged through the supreme court and ECHR again, although it appears the court systems are very committed to rushing this through on Charlie's behalf ASAP.

stopfuckingshoutingatme · 07/07/2017 20:53

I dont think they are like us . I mean the MN demographic . They are differently educated and differently wired . As are many people.

We want people to act a certain way and they don't fit the mould , it is what it is

I hope he is not suffering I don't actually believe he is cognoscent or sentient enough to know that he is suffering that's what I am feeling myself

Zoflorabore · 07/07/2017 20:55

Darth well done for your lovely donation Flowers

I'm not in the position to donate just now but will go back and write the charity name down for when I can.

I'm actually relieved that someone has mentioned things not being right, I have thought it for a few days but do not want to appear insensitive.

It's almost like Charlie is being paraded by the press and the parents are on a power trip. I also feel that GOSH have possibly been "bullied" into not allowing the life support to be switched off.
These parents now know that they are in control and I wonder what their motives really are.
Sorry if that offends anyone but it's just how I feel.
I have a weird gut feeling over themConfused

Pop24 · 07/07/2017 20:57

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. Are gosh just trying to prove a point that they have always been right? Struggling to understand how some experts have come out of the woodwork who gosh have not already consulted. From the outside it now looks like gosh have bowed to political and social pressure but I'm sure this isn't the case and it's all due to legalities? I'm inclined to think that a world leading hospital wouldn't give a shite what people on SM (or the pope ect) think of them as long as their patients are served best treatment but I just don't know anymore!!

SilverLining17 · 07/07/2017 20:58

In her DM to me charlie's mother said he can see. She said that GOSH have said there's no reason he can't. She also said he opens his eyes and has a sleep / wake pattern.
Looking at the more recent photos of him it seems unlikely. His eyes have been closed in all of them. If he was really waking wouldn't they show those? To gather more support and evidence?

I wonder if Charlie's dad is in denial as much or if it's mainly driven by Connie.

Zoflorabore · 07/07/2017 21:01

I honestly think they're going back to court ( note how quick it has been arranged ) to get a final date where life support ends as like I said above I think they're being bullied and probably pressured by the family and worldwide press.
Time will tell...