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Baby in Great Ormond Street

(52 Posts)
Janetblogs Fri 26-May-17 08:18:48

I feel so so sorry for the parents of little baby Charkey trying so desperately to fund a cure against all the doctors and the Courts advice and they now want to take it to the Suprene Court
Having said that personally I think he should be allowed to die but I don't see why the drs can't let the parents take him to the US
Theyve raised the money why can't they just help the parents to get him there - what possible harm can it do ? .
I can fully understand that the parents want to try and I'd hate to be in that position but what harm cab it so to allow them to take him to the US - if they are so sure he won't survive allow the parents the solace they seek by trying everything

radicalnan Sat 27-May-17 09:23:16

Only the lawyers winning here. I have no idea how I would cope, my instinct is to let them try, some thing may be learned and their hearts may be eased.

Sheilasue Sat 27-May-17 09:33:45

If the American doctors have agreed to see the baby then they should be able to take their baby there. I only hope the Doctors haven't given them false hope.
They must have had a discussion with them.
The thing is Great Ormand Street is a very famous hospital people all over the world bring there children here, it is such a dilemma for them.
Truthfully they just can't let go which Is why it's so sad.

Jaycee5 Sat 27-May-17 09:35:18

Apparently the doctors in the US were not very positive about being able to help him. The parents were clutching at straws which is understandable.
It is right that the matter should go to the Court if the Drs and parent disagree and it is clear that no one is making this decision easily.

Theoddbird Sat 27-May-17 09:41:52

Let him go peacefully...hold him gently as his soul flies free. This is what I would gently say to his parents xxx

Luckygirl Sat 27-May-17 09:46:50

How easy it is to understand these parents clutching at every straw. But GOSH clearly think the child is in pain and distress with no prospect of a future; and the court agrees. Let us hope this poor child will be at peace soon.

Skweek1 Sat 27-May-17 09:47:31

The final decision should always be the parents, especially when they have saved up for the treatment - I remember the case last year when a kid was taken from hospital and taken to Czechoslovakia for treatment - may not have been saved, but came back looking no end better and may not have survived that long if the hospital had its way. Hospitals should allow any parent or patient if compas mentis enough to know what they want (most terminally ill people, including young children instinctively know when they are ready to die)and to allow that understanding to be paramount.

Christalbee Sat 27-May-17 09:50:44

Why prolong the agony. So sad to see all this squabbling over a poor little life that will never be able to win the game! (sad)

ethelwulf Sat 27-May-17 10:11:55

The only comment that I feel qualified to make is that I pray to God that I or anyone close to me are never in the position of having to make a decision the like of which is confronting those poor parents. Tragic.

Jinty64 Sat 27-May-17 10:14:01

With what it must be costing to keep going through the courts I'm sure they could have sent him to America several times over. If the parents can afford all the care they will need (to transport, treat and bring him home) then they should be allowed to take him. They will not get the outcome they are looking for but, all to soon he will be gone from the news and from everyone's minds. It is his family and particularly his parents that will have to live with their grief and their choices for the rest of their lives. That said it is just so, so, sad.

Aepgirl Sat 27-May-17 10:49:59

I sometimes think that medical science is a curse. That poor, dear baby should never have lived, and should have died peacefully and without pain. It is heartbreaking for the parents who must know in their hearts what the outcome will be, everyday must be a night,are for them.

willa45 Sat 27-May-17 11:22:19

I suspect that with the amount of ongoing research in the field of genetic engineering, this case presents an opportunity for more research; not a cure.
If this child is so severely disabled, he should be allowed to die peacefully without any more needless intervention. It's also a heart wrenching decision to have to heart goes out to this poor family.

Katek Sat 27-May-17 11:30:45

Can the American team -who apparently did not fully realise the extent of this little boy's disabilities- not come to GOSH? They could then make a decision in tandem with GOSH medics and save this little scrap from a traumatic journey with very little likelihood of a positive outcome. At least the parents would then have felt that they had done everything possible. They would appear to have raised over million pounds, couple of flight tickets and a hotel for the docs would barely dent that.

icanhandthemback Sat 27-May-17 11:41:05

If the American team don't think he can be helped much, they should withdraw the offer for treatment and then this would be a non issue. However, no doubt it will make make them a lot of money so this poor child is caught in the middle. Personally, as a parent, I would want to explore every avenue for my child and cannot imagine wanting to give up until all hope was gone but I may feel very different if I was actually there. My distrust of GOSH, based on experiences of many parents of children who suffer the same congenital condition experienced in our family, makes me slightly skeptical about their handling of the parents so I reserve judgement about whether the parents are being selfish or not.

rizlett Sat 27-May-17 12:33:26

By current law the final decision cannot be made by the parents as naturally they are not in any position to make a decision without bias.

It's right that it's not up to the parents to choose. Historically this partly came about due to (amongst others) Jehovah Witness cases where the parents refused to allow their child to have a blood transfusion due to religious beliefs. In a case like this today the parents wishes would no longer be upheld.

Whats important and lawful is what is in the best interests of the child. (or adult if they don't have capacity to give consent.)

Although extremely tragic I guess it might also take away the responsibility for making the decision away from the parents which some people might find a relief later on in life.

paddyann Sat 27-May-17 12:35:06

can I just say again,if you haven't been there you wont understand ....they have to know they have done everything possible to save him before they can let him go.Otherwise they will suffer guilt for the rest of their lives ,dont condemn them have some sympathy for the horrific situation they are in and just pray that you never find yourself in a similar one .

amt101 Sat 27-May-17 13:21:10

Just thinking about the couple that took their little boy to somewhere in Eastern Europe. They were imprisoned for taking him from hospital and running away with him. Whatever treatment he had it was successful so I don't blame these parents for trying. The NHS is not always right and sometimes lags behind other countries.

pennyh47 Sat 27-May-17 13:35:57

My first child, a much wanted and loved son, was diagnosed with leukaemia at 2 and a half and was under GOSH. He went into remission twice but after 18 months we were told they could prolong his life for a while but it would mean more suffering for him. Hardest decision I've ever made but we took him home to die. My FIL couldn't understand and thought we were giving up but I don't regret it. He died in my arms peacefully knowing he was very much loved, I feel so sorry for Charlie and his parents but understand both sides. I think they should let him go as he has suffered enough. Maybe it was easier to accept death years ago before the advances in medicine. I hope they find some sort of peace soon

grannybuy Sat 27-May-17 13:58:21

The parents shouldn't feel guilty for not doing all they could for their child. They have done all that THEY could. The matter has been taken out of their hands now, rightly or wrongly. They fought the fight for their child. There will always be sadness, as there would have been if the child had lived in a poor condition.

Grampie Sat 27-May-17 15:35:40

Ever so gradually the state replaces the family.

...this is yet another example.

Tessa101 Sat 27-May-17 15:58:37

I thank goodness it's not me in that situation because I know I would not let a court make a decision about my child, if I was neglecting it or abusing it I could understand but they are acting out of pure love. Let them free to take him they've raised the money.

Coggers94 Sat 27-May-17 16:44:47

As a retired PICU nurse I agree with you

Dillonsgranma Sat 27-May-17 18:38:20

Grannysue, my heart goes out to you. Please forgive youself. Much love xx

Catlover123 Sat 27-May-17 21:23:26

whilst the parents fight is understandable, and heartbreaking, as far as I remember the doctors said this baby was suffering- that he was experiencing pain. Not only is this truly awful for him but also for the nurses and doctors caring for him and I think the parents need to let go.

M0nica Mon 29-May-17 06:08:08

pennyh47, what a tragedy, and what a choice, but, as I said in a previous post, my parents made the same decision over an adult child and never doubted that they did the right thing. Love can mean knowing when to let go.

Starlady Mon 29-May-17 12:44:22

Such a heartrending post, Penny! My deepest sympathies on your loss. Completely understand your decision.

I understand Charlie's parents' feelings, too, though. Imo, they should let that little boy go in peace, but it really should be up to them (the parents).