Charlie Gard

I am a bit puzzled here as I thought his ventilator etc. were to be switched off - so why does he need them at home? It sounds like prolonging the agony even further.

Well of course they would - but is it likely that Charlie could be put in his own cot at home? And for how long?

I think from what I can understand they want to take him home and spend a little time with him before turning the ventilator off.

Sadly poor lamb won't know whether he at home or not

I am beginning to think "enough" - that baby is not being served in his best interests. What the baby needs is a peaceful end without pain or trauma, the doctors are best placed to achieve this.

Bring the cot downstairs?

If he is at home he is their child again , not the hospitals?

He is his own person, he "belongs" to no one. Your children are only "leant" to you until they are adult. If there is a chance that he will suffer at all in the move then it must not happen. The doctors have indicated that he will, so it must not happen.

This is a very sad case but I do feel this is an unrealistic request and not in the child's best interests. According to the information on the BBC site he needs the ventilator, and there are difficulties housing it. He also needs constant specialist nursing and a specialist doctor on hand. They are few and far between for conditions like this. The parents may say they will pay all costs but other children are then denied the care of the specialists while they are with Charlie. Then when the inevitable happens the ventilator will need to be made fit for hospital service again and sterilised as it will have been out of a controlled setting. That again deprives other children. GOSH has said they can provide a suitable hospice and I think the parents should, albeit reluctantly, accept that. We had to make such a decision when my mother and sister both died in hospital rather than their home but we, as a family, are eternally grateful for the care and compassion they received and the kindness we were shown.

They will pay costs but will claim it back from the NHS- that seems a bit odd. They have been offered a hospice. It is a pity they can't compromise as so many have to. You wonder if once you get involved with lawyers and litigation it is impossible to step away.

Many children's hospice have facilities to enable parents to be with their child for as long as they need to both before and after the child dies. They try to offer that precious time in a tranquil and caring environment to help parents who are going through the worst of times. I hope the parents will accept the offer, but I fear their relationship with GOSH is so broken that anything the hospital suggest will be challenged/refused. So sad for everyone involved.

My heart goes out to all the parents of children born with life limiting illnesses who have let their little ones go with dignity and privacy.

Their pain won't have been any less.

What must they make of all this?

If we can put a man on the moon , it cannot be beyond someone working out how to get this child home to die. His parents will never be at peace if they don't get their wish.
That said , I think the baby should have been allowed to slip away from his poor life many weeks ago.
While I have been on GN we have had many poignant threads and posts from members who have faced this very situation and they have done it with dignity and with the best interest of their children always foremost.
I think these parents have been taken over.

It is so easy for us to criticise the parents and say what they should do and think .

Whitewave, you never say my child ? Do you refer to your child/children - the children loaned to me ?

I don't think your children are loaned to you at all. When you loan/borrow something you eventually give it back don't you ? My children are adults who think for themselves but they are still mine. There is most definitely a tie that binds. They might move to another town or country they might marry and have children of their own but my heart belongs to them and theirs to me.

Of course I do annie but I never have owned their life. I would die for my children but I have no right to their life. I have simply had the privilege to bring them to adulthood. The child's needs must come first and last. However hard it is for me as a parent I must always allow the child's needs to take precedence.

I agree with annsixty. Surely if the hospital made it possible for the family to have a picnic on the roof of the hospital, someone can make it possible for them to take the child home to die? Why is this happening now? Did no one tell the family know Charlie could never go home?

I think a hospice could be the best answer. He could surely have his own cot and toys there. The parents could stay with him and I'm sure they would get a lot of support from the staff, which they may find they are grateful for.

He hasn't belonged to the hospital Anniebach he has belonged to the court. Until now the hospital hasn't been able to sanction him being moved.

It isn't just the hospital there are so many factors involved. The ventilator and apparently they can't find a specialist doctor willing to help. I remember when my friends little boy was ill in GOSH they would remove his drip, wrap him warmly and provide a pram so she could take him for a walk. It was extra work but they did it so she could bond with the baby. Above and beyond their duty, just done for the mum and baby.

GOSH offered the chance to take Charlie home to die using a mobile ventilator but the parents want him home for a week and the problem is managing that. Having read the court evidence of the palliative care expert it sounds like a risky business trying to arrange intensive care in a small flat. They would also need 24/7 nursing and medical care - I would think you would need at least double staffing as noone would want to work alone with the current threats of lawsuits and protests. Most medical insurance would not cover intensive care in a risky and possibly threatening environment.

trisher and Cold that makes sense, thank you.

Good posts merlot and ann

I know many will not agree but I am horrified by all the machinations that have gone on round this poor child. The press, the extreme religious right-wing pro-lifers from America and the parents have all used the situation.

What that so called doctor did in suggesting that a trial - that hasn't yet been carried out on mice - should be carried out on this poor child and also in convincing these parents that had it been done earlier it could have worked is iniquitous.

I am sorry for the parents but it was always going to be the child's needs that have to come first. In this country no one owns anyone else; we are all autonomous and courts will always ensure that someone can be represented so that their needs are judged not those of a family member. That is our law and our justice and I have no idea why the USA or the Catholic Church think they have any say in how that law is carried out.

GracesGranMK2
The majority of posters on here do agree with the points you have made. Most are appalled by the "media circus" that has been created by people who should not be interfering in these matters.
Women screaming death threats at staff are behaving like evil crones in my view.

That family need to be given some dignity.

Are the parents expecting GOSH staff to leave the hospital and set up a twenty-four hour care facility at the flat? I don't really understand what they are expecting. That other children are not admitted whilst a number of staff are looking after Charlie? That can't be practically possible, no matter how much they wish it could be. It seems like ever-increasing demands by the parents.

I think most people do agree Gracesgran.

There are many babies out there whose parents are having to come to terms that they may not live beyond infancy; not with the same disorder as Charlie but with other life-limiting syndromes.