Charlie Gard

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.

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.

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.

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

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 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.

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 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.

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.

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.

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

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

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 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

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

No problem AB I was getting confused with the latest

A typing error Bluebell sorry

I totally agree Tegan2 I think they are in denial understandable
i m not sure of the significance of who gives them bad news, bad news is bad news
What is the bad news? what does a scan for scan reading mean AB ? Sorry I haven't seen the latest news

Then surely trisher if it was a legal requirement it should have come from their lawyer. I do think it was wrong they had to learn this way , they deserved an explanation from the medical team , what of the doctor who flew in to examine the little one

Alas, I fear they are in some sort of denial and won't believe whatever they're told. I can't help but feel that people who have given them false hope should be held accountable for the pain that they're going through.

Perhaps it is a legal necessity now Anniebach with the parents challenging doctors it must be essential that someone with legal knowledge speaks to them so there can be no challenge. And perhaps also the doctors have abandoned trying to explain things after so much opposition.

Should a lawyer give results of scans? surely a doctor should have told them

Why is it cruel for the lawyer to tell them? its going to be sad news whenever they hear it, the earlier they are warned maybe the more likely they are to accept it.

Not by medical staff, just the lawyer told them of the latest scan - it made sad reading . Cruel they should find out this was - if correct

Sorry ab could you explain? have they been given bad news about the scan?