Charlie Gard

No problem AB I was getting confused with the latest

Sorry, the first reports were incorrect, the lawyer told the court the scan made sad reading, as is his right I would think

Seems now it was a preliminary hearing , the hearing is to take place Monday , the lawyer has apologised for causing distress , the parents had not read the results

It's expected that any information that's to be given at a directions hearing (or any family court hearing) will be given to all parties before the hearing takes place. In this case, the Court is reviewing matters regularly, for obvious reasons. Given the high profile of Charlie's situation, I'd expect all parties would be keen to share information before updating the Judge t a hearing. Charlie,s parents and Charlie are legally represented. If their legal reps weren't informed before the hearing that would be very unusual and poor practice.

Seems the parents only knew when it was said in court, the baby's father was very angry and the baby's mother very distressed , they had not yet read the results . Could be it hadn't been discussed because this was just a preliminary hearing

It is just so distressing for all involved

Perhaps they just hadn't read the results that had been given to them because they didn't want to ?

jane10 newborns are tested, but I don't know if David was tested. I suspect he was though because if PKU isn't identified in a baby, the changes are irreversible, including a small head because the brain doesn't develop properly. David doesn't look like he has a small head. Basically PKU is controlled by a special diet that's very low in protein, and supplements. From what I understand, David's autism affects his understanding of why he has to eat a special diet and he keeps trying to eat food that's bad for him. When someone is prescribed Kuvan, they can eat a more normal diet and live a more normal life. Basically Kuvan protects the brain from the damage.

devongirl I don't think the CG case will result in more families asking for expensive treatment because it's been going on since NICE was set up over 15 years ago. The drug Kuvan has been available for more than 10 years and it was approved as effective by the EMA (the EU medicines agency) years ago. Alexander's parents are active campaigners for the PKU charity, not least because Kuvan transformed their son's life. David on the other hand is at risk from brain damage and developmental problems, as well as many other conditions. This is why I said not giving him the drug could result in costing the state more in the long run. He could end up needing care in some form, help at school (whether or not he is able to stay in mainstream education), he and his family might end up claiming a range of social security benefits. The list goes on. That's not even taking into account his autism. The curious thing about David's case is the original reason for not prescribing Kuvan was the cost. Then this was changed to the drug not being proven effective. Perhaps the real stumbling block in David's case is his autism.

Re Charlie Guard. The other day I did hear or read somewhere that the GOSH doctors were not persuaded by the American doctor when he met with them and the mother. It will be hard for the judge to weigh up the evidence when there's an ethical aspect, but I don't think the parents are going to get the result they want.

I am sure the judge will decide in favour if the hospital, I hope this time they will act quickly, little point in delaying the little one's death.

Eglantine the parents hadn't seen the report. The barrister for the hospital spoke out of turn when she said the scan made sad reading and had to apologise to the judge for causing the parents distress.

I don't understand how that could happen. If the parents hadn't had sight or knowledge of the scan, presumably none of the parties, or knowledge the Judge had.

The hospital told their lawyer , the judge asked about the hearing on Monday , the lawyer then told the judge what she did about the scan , the judge said it should be discussed untill the parents had read the result reports, the lawyer apologised for the distress she had caused.

I can't seem to find a good recent report but what I read was the lawyer said the scan was a sorry story if that's all she told the judge surely that's what everyone knew anyway or did she go into details ?
I can't help feeling that whatever anyone does or says it will be wrong and a reason for the parents and supporters to damn all concerned

It's a shame the baby wasn't released the time they first asked and first said they had raised the money for his health care he should have been allowed to go with them and died on someone else's watch instead of all this vitriol and blame game they will hold resentment in their hearts forever now not a good memory of a poor little baby

It is incredibly tragic, and dreadful that it has become such a media circus.

If I was a parent in such circumstances, privacy would be my blanket if you know what I mean?
Everyone has an opinion as is clear just from our little forum, and that can't possibly help anyone.

That might have been the best option from the parents' and their supporters' point of view, but I doubt if the doctors involved would have thought they had made the best medical decision, which I'm sure they are trying to do. The courts must act within the law, which I'm sure they are trying to do.

Whether current law on these matters is the best it can be is a separate issue and is the responsibility of parliament, not the courts.

I feel sorry for the dreadful state the parents are in but I don't think its anyone's fault, just a truly awful position to be in.

According to the DM on line, the barrister for GOSH told the Judge the scan results had arrived by fax minutes before they went into Court at two pm. My take on that is there would have been no time to get copies made, distributed and discussed in the kind of detail necessary before the listed time of the hearing. The hearing would have been directions only, to ensure everything is in place for the next hearing listed for a Monday and Tuesday.
I'm with whitewave, I would want privacy, no media intrusion. I'd hate to have strangers campaigning for or against me. I'd hope for support, love and wise counsel from my husband, family and a few close, trusted friends. There are steps to make the Family Courts more open. None of the children consulted about these plans wanted their circumstances spread all over the news media.
Charlie is too young to understand what's happening but I do feel the impact on his parents mental health is being worsened by the publicity surrounding their tragic circumstances.

Did everyone one know the results of the scan Bluebell? The supporters are irelevent the parents are not

Good post, iam.

iam here here!! Children are the innocents in all this. Their lives are their own and absolutely nobody else's.

This child's life seems to belong to the parents, the hospital, lawyers, the judge ,

BlueBelle the doctors could not release Charlie if they felt it was not in his best interests. Their concerns all along have been that he may be suffering and they do not know how much pain he experiences. That is why the matter came to court. I have no doubt that everyone at GOSH will have done their best to find a way that they could accommodate the parents' wishes without causing any more distress and pain to the baby.

I have no doubt that the hospital is doing what they think is best for the baby , I have no doubt the parents are doing what they think will help their baby , this is why I remain neutral in this .

Parents make the wrong decisions at times, yet the doctors who examined baby P certaintly made the wrong decisions.

I have forgotten the town where a court ordered children be taken from their parents because of sexual abuse , covens etc , perhaps someone will know?

I have been reading an article this morning with which I heartily concur.

Basically it is this:-

GOSH has advised the babies parents as to their opinion as to the babies quality of life - poor and prognosis - worse.

Up steps all sorts of people, from the pope to Trump, to the man in the street. Who insist through various means like petions that they know better than GOSH.

This mood defies facts over feeling, and insists that any opinion is worth as much as that of an expert.

We can see this in all areas of our life, where experts are told they are wrong, and we know better because opinion matter. it is sad.

The only person who knows nothing of all this surrounding mayhem is thankfully Charlie
I too worry about the mother s mental health well dad too but she seems and looks very vulnerable
There are no answers are there? I would want complete annonimity and privacy myself and maybe the law should be changed to that.., its done for other things

the parents will eventually reach the same conclusion as GOSH ,but they must be allowed to reach it in their own time.IF this had all been done behind closed doors it would have been better for them but a decision will have to be made and it can only be done by them.For THEIR future ,otherwise they will feel they didn't do enough to save him.The guilt of that will cripple them for years to come.So we should all step away from it and leave them to the most difficult thing they will ever have to do .Those who believe in prayer should pray for them and the rest of us think of them and be thankful we dont face the same journey thhey do