Charlie Gard

I can't help feeling that, as no new news has come out, the judge has made the decision and it is all happening now without the media circus. I hope the parents can have the precious time they desire with their child, no matter how short and will reflect afterwards on the best way forward. I rather fear though that they will take GOSH to court and will try to reclaim the costs from the NHS, a path I fear will not bring them the 'justice' they think it will.

Yes; very good article.

Not only that, Devorgilla, I feel that will delay their healing process and alienate people. It really is time they let go, now. Where are their parents?

Their parents are there with them devongirl.

I think that Connie's mother was at Charlie's bedside when they were in court the other day.

I still think the very dodgy groups that supported them are a side issue. A very unfortunate side issue, and one that actually damaged the parents' cause (as evidenced by the Melanie Phillips article).

The simple fact is that the parents had their parental responsibility overruled by the courts and no longer had the power to make any decisions about what they felt was best for their child. This is surely one of the most oppressive things that state can do to parents and is quite rightly a last resort. It is usually and quite rightly exercised only when parents pose a real threat of harm to their child. I do not believe these parents did pose that level of risk but that's just my opinion, the important thing is to try to imagine how that must feel. From this comes their desperate fight using all the publicity they could muster - if I felt wronged by the state or the powers that be, and felt powerless to challenge that, and felt time was running out for me to do so, I too would go on Facebook, go to the papers, shout as loudly as I could in the hope that someone would listen to my desperate plea and help me to put it right.

It is not their fault that this attracted these far right crazies from the US and I have never read or seen anything that suggests they have agreed with their tactics. So I refuse to give any of my attention to those unspeakable groups who will surely drift away and latch on to some other cause as soon as Charlie's little life comes to an end. And I refuse to allow them to distract me from what matters which is how Charlie can receive the best end of life care possible and how his parents can be helped to go forward without him.

A very powerful article by Melanie Phillips.

Great post nightowl, I ignored the support groups, of no interest

Thank you Annie, I agree.

About ignoring the support groups.

devorgilla, I got a link to the article via Twitter. It appeared to come direct from melaniephillips.com

Thanks Baggs, I clicked your link in the end. After a couple of eye ops I prefer the printed word. Good article as you said.

www.bbc.co.uk/news/uk-england-40745988

Judge's ruling re. hospice care

This article by a paediatrician gives the professional view and makes interesting reading alongside Melanie Phillips's article.

The fact is that the parents left alone with no help from the state or NHS would have lost Charlie months ago.
Their position from the beginning was a weak one being utterly dependant on the NHS to keep Charlie alive.
I don't know how it ever came to pass that he became 11 months old. It has increased their suffering it has made the rest of their life harder to bear than if nature had taken its course and he had died straight away.

I wish they would stop playng GOD in the NHS and saving every child that gets born even if they are so disadvantaged that they cannot survive on their own.

They are experineced enough to know which children can be saved and I'm sure they don't overlook any chance but Charlie, who can't breathe should have been allowed to die.

The Melanie Phillips article and the one by the paediatrician provide good summaries of the impact of the input from the American doctor. It's shocking that the doctor from the US gave the impression his treatment could help Charlie, when that doctor failed to respond to invitations from GOSH to examine Charlie, to read his medical notes, as early as December, less than three months from diagnosis. He still hadn't done this when he gave evidence via video link. Only when "invited" by the Judge did he fly to the UK and undertake a more professional assessment. It was then it was acknowledged he was financially invested with the treatment.
This kind of involvement by an 'expert' is usually avoided in family court hearings, where evidence from treating medics and from one agreed, independent expert, is the norm.
These parents look increasingly ill. Neither they, nor their precious child have benefitted from their circumstances being reported in such distorted and inaccurate ways, especially by the US media. The same goes for Charlie's Army, their input and influence can't simply be dismissed because it's unpalatable

I don't dismiss the influence or input from Charlie's Army Iam I simply refuse to allow their behaviour to influence my view of the parents' actions. There have been some very critical posts on here and comments elsewhere that horrify me with their lack of empathy or even sympathy. This is not and never has been about Charlie's Army, but about moral and ethical decisions taken in the NHS every day, about the power of the state and the rights of parents, but above all about the suffering of Charlie and his parents.

The so called army hasn't made the slightest difference to ne, what has distressed me very much is the disregard of the parents from some posters, even they should have more children.

For me doctors words are not sacred, there have been too many people hurt by some, and as is said - doctors can bury their mistakes. I am not saying this happened with this baby but I think their treatment of the parents was unpleasant, all was well until the parents questioned the treatment . This is not tolerated in this country , doctors are Gods.

The parents had no choice, no control over their own child, and the more they fought the tighter they were reined in. Never , ever take on the establishment .

I was also amazed the baby's defence council was respected as only having the baby's interests to the fore, did she consult with the baby ? Or the hospital?

So the parents had to fight the hospital team , the child's defence team, a judge who I never thought for one second would go against the hospital.

Blaming the demonstrators is a distraction.

Sorry this will annoy many but I think the whole matter was handled badly

In this case Anniebach the doctors are right, the condition that Charlie has would never allow him to get better he could only deteriorate. Would you really have this poor child on a ventilator forever ?

This is not a condition for which there is any cure at this time. Perhaps in the future, after more research, babies could even have treatment in the womb.

Perhaps, after all this and a period of mourning, these poor parents may be offered PGD and have a healthy child.

Yes, AB, doctors can bury their mistakes but they will bury them a lot more easily when we get a private health system. The NHS has a better record than most of owning up to its mistakes, and paying out. All patients are entitled to a second opinion. It was sought in this case and found wanting. In court cases, by law, all sides have access to the information available. The defence counsel for the baby is there to protect the child's interest, , which is not always the parents' interest, and of course you cannot consult a child in that condition but you can consult all the evidence and draw an informed conclusion. Whose interests should the defence counsel put first then? The parents' over the child? At the end of the day the judge is there to make the difficult decision on behalf of the child and no doubt take the flak.

A healthy child will not take the place of their first born.

I don't want to seem to be lecturing but I want to say something about what has been called the child's defence team. This is not a criminal trial. The law in this country allowed was for the child to be separately represented from their parents and from the NHS/local authority. The Court in a situation like this appoints an independent social worker as Children's Guardian. The CG will usually be very experienced and will be selected by Cafcass as the person with the most relevant expertise for the child. The CG appoints a solicitor, again with the specific needs of the child in mind. The CG does see the baby, child or young person. They interview all relevant people, starting with the parents. They read every statement submitted, will discuss medical or other specialist reports with the author.
by criticising Charlie's Army, I do not criticise the parents.

I understand too that Alison-Smith Squire, who has written extensively on this case in the Daily Mail, is not in fact a DM journalist but is the media agent and publicist acting on behalf of the parents. This is not acknowledged in the articles. She is a sort of Max Clifford. My reason for stating this is to show how these distressed parents and their situation are being manipulated and used by other 'players'.
For those defending the actions /decisions of these grieving parents I ask you to think how their actions/decisions may be impacting on other bereaved parents, in equal distress, but choosing privacy not publicity.

Doctors are not sacred Anniebach but then neither necessarily is parenthood. Yes giving birth to a child is a huge event, but there are just as many if not more examples of parents who have not actually always had their child's best interests at heart, as there are instances of doctors being wrong. Charlie's parents may love him but let's not forget that it is the staff in GOSH who have cared for him and provided the support and treatment that have enabled him to live as long as he has. They are the ones who believe that he may experience pain but who have gone on maintaining him in a condition they would prefer to release him from, simply because the birth parents wanted them to. When Charlie is taken to the hospice to die the staff may feel a great sense of relief that he will finally be free of suffering, but I would imagine many of them will feel sorrow and loss just as the parents will.
The difference is that they will then go on to care for other ill babies, lets hope that there will be better outcomes and parents who will appreciate their work more and none of them are so upset by the abuse that have received that they decide to leave the hospital.