What is the best decision?

[LovelyLadyLux]

Re: Baby Charlie Gard

Lots of info re: this baby but .........

What would you decide? What is the right decision or best decision?

WHO also has the right to decide? Are decisions made by the parents sovereign?

[Mad Dilys]

While there is life there is hope.

As a parent I know I would fight for any chance no matter how remote to prolong my children's life - as long as they were not suffering as a result.

God Bless all involved and give them strength whatever the outcome.

[Horus]

I cannot think of a worse dilemma for the parents or the doctors treating him, on the one hand the love and desire of a parent to do anything for the child’s survival, as opposed to the doctors who have to make these decisions. From the child’s perspective how can we determine that it is not in constant pain or suffering? or that by artificially prolonging its life we are inadvertently condemning the poor soul to more distress? as I said an awful decision either way.

[LovelyLadyLux]

This has not been covered here extensively but it is really a lose/lose situation. I feel for the parents and can fully understand their desire to save their child and will probably live with the guilt for the rest of their lives that they could have done something more or less or sideways that would have made a different to their child.

Hopefully the little boy is not suffering, hopefully the parents can find peace in the decisions that have to be made, hopefully the doctors, nurses, technicians and all those involved with this family can also come to closure over this.

It is rarely talked about in difficult cases like this but there is also a heavy toll taken by ALL persons and professionals involved.

It is called "Vicarious traumatization." We're all feeling people and although we might be on the periphery we too can experience the same anguish and indecisions and sleepless nights as family. Because of the work that is done often this compounds for professionals as they deal over and over again with similar situations.

It is never made known to the public at large but sometimes the coffee room discussions become very heated and professionals themselves become very polarized over matters such as this one. To a certain extent I'm glad I'm now retired - life and death decisions can weigh heavily on all.

[Grandad]

I believe that, even if the new treatment can marginally improve Charlies situation, he will always be simply kept alive with absolutely no quality to his life. That could go on for many years with premature death probably inevitable. In my opinion the only humane action is to remove life support and let him pass away. He has no life.

[LovelyLadyLux]

@Grandad - Fully concur with all you've said. It really is the only solution and nobody knows if his brain/body is registering pain and what level that might be at. I think to remove all life-support is the only real solution although I fully understand the parents anguish and their desperate hope for a miracle.

[LovelyLadyLux]

Apparently your courts are going to allow a US Doctor to examine this little fellow.

I really hope a decision is reached really soon so that all involved can reach peace.

[Horus]

Its the old story I’m afraid, too many experts being called, some for and some against. Each expert giving their own theory that often contradict another expert, different techniques available in various countries, so where do you stop?

[LovelyLadyLux]

I haven't followed this particular case for very long as it has only recently become news here and it has only been in the last few days that I came to understand the baby has a genetic condition. Again not knowing specifics I'm of a mind to think that because this is genetic it isn't going to really be resolvable.

Not sure if it was one of mine how I'd ultimately decide but I do know that as a parent they're are unlikely to ever give up trying which sometimes doesn't bode well for the child or anyone involved. Can only hope something can be arrived at that affords the parents resolution and peace.

[Grandad]

The proposed procedure in the USA is experimental. It is reported that it has shown some slight improvement on some children that it has been tried on. It is not a cure and the children face a life of total dependency and a lack of any responses.
I just wish they would start thinking about Charlie and not use him as a guinea pig. Remove his life support, give him palliative care and let him pass peacefully away. I think it is cruel to prolong his life artificially.
LLL, you may not have heard this but there is a child in the UK who is 10 years old with a similar condition (but not identical) to Charlie Gard. Her mother is her carer and Rose, the young lady, is on medication and requires frequent hospital attendance. She is effectively brain dead. Her mother has applied for no life support to be provided when Rose next has to go into hospital and this is being considered by her medics. I think this is a case of a mother facing facts whereas Charlies parents insist on clutching at straws and not facing the facts.

[Horus]

All so terribly, terribly tragic

[LovelyLadyLux]

My sense is the "Charlie" matter has been in the news in the UK for quite some time. It has only been very recent that it has come to the Medias attention. I've never heard anything re: Rose.

Having to make serious decision re: Charlie's scenario is really very hard when a baby is born. It is the culmination and celebration of parents love, the symbol of the past, present and future and all hopes and wishes are put into this child. It is a time of ALL the family coming to honour the new wee one and all truly wish blessings on the child perhaps seeing in the baby a legacy of themselves that will be carried on into the future as the child is rewarded with successes, achievements, milestones reached etc. However when all these wishes, hopes, aspirations are thwarted by a trick of Mother Nature it can bring the most stalwart parent to their knees.

Often they're wracked with "Why me? Why my child?" and as no answer satisfactory answer is ever forthcoming they resort to trying to exhaust any and all possibilities to save their child. It is really tragic all 'round and often parents can get stuck in their own grieving process at a stage that without professional help they'll never be able to get out of. At this time the opinion of others, usually well meaning, usually objectively factually accurate are dismissed and often even attacked by the parents.

Terrible tragedy all 'round.

From pictures I've seen on TV of this baby, in my own opinion, he looks distressed. Just hope this matter can come to resolution soon and if the baby is suffering that can be alleviated via removal of life support.

[LovelyLadyLux]

Just an FYI as this is what is hitting our news here. Granted this is out of the USA:

Little Charlie Gard’s Parents Storm Out of Court, Call UK Doctors ‘Evil’

The mother of terminally-ill British baby Charlie Gard stormed out of a UK courtroom on Friday after English doctors revealed disturbing, previously unseen scans of the eleven-month old child, prompting the father to stare-down hospital lawyers and call them “evil.”

According to Fox News, the boy’s parents had not seen the newly released MRI scans of Charlie’s brain function, prompting the boy’s mother to abruptly leave the room after hospital lawyers referred to the documents as “sad reading.”

"I'm very sorry. I didn't mean to cause distress," said Barrister Katie Gollop, prompting the father to mouth the word ‘evil’ at the UK doctors and their legal team.

The legal back and forth comes as Little Charlie Gard’s parents continue their fight to bring the sick child to the United States to undergo an experimental therapy.

A specialist from the US, Dr. Michio Hirano from New York’s Columbia University, is currently in London to assess Charlie’s condition and whether the new treatment could help the boy.

Little Charlie Gard made headlines earlier this year after the UK High Court defied his parents' wishes and ordered the boy to be taken off life-saving medical equipment. Charlie suffers from a rare genetic disorder, rendering him unable to breathe without life-support machinery.

Dr. Hirano has told the court the boy has a 10% of improving should he undergo the experimental treatment.

Doesn't seem to me the American doctors are that optimistic for much improvement.

Sad all round.

[Grandad]

And now it is becoming really nasty with social media scum posting vile comments against the parents of Charlie AND Doctors and Nurses from GOSH, each taking opposite points of view. Even death threats have been sent to medics from GOSH. It is a pity these people don't try to understand the complexity and sadness of this case before they jump on the shortsighted bandwagon and join the mob who haven't got a dozen brain cells between them.
The judge hopes to make the final ruling by Tuesday.......Tuesday can't come soon enough.

[LovelyLadyLux]

This definitely does seem one of those no win situations and it is really sad that it has gotten this much attention as social media attention to any matter seems to bring the crazies out. I bet face to face 99% of those having OPINIONS wouldn't even comment but because they can hide behind the keyboard most are now voicing all sorts of opinions re: parents, doctors, medics and all those involved.

Definitely hope this matter is resolved soon - as in - VERY soon.

[Mad Dilys]

I saw the poor parents being harassed by the media yesterday. I was moved to tears by their appearance, thin and gaunt and literally without an realistic hope for a happy outcome.

[Grandad]

So it was Charlie's parents who made the final decision about Charlie destiny when they conceded that the latest scans showed that his condition is declining. Very courageous of them and heart wrenching to make that decision.
I understand that Charlie's pain relief will be increased before his life support is removed. I hope he passes away peacefully and free of pain.

[LovelyLadyLux]

I'm not home right now. Taking a wee break away and doing some shopping so I haven't been watching News on TV at all but I did catch a photo on the laptop of the parents. They definitely present as extremely frail, tired and stressed.

I don't know how a parent could make a decision in this matter and sadly these two will live with absolutely everything related to all thoughts and their child for an extremely long time. Hope at some point they can get beyond this and get back to semblance of normality.

[LovelyLadyLux]

Sadly I see the little guy has passed. That, in and of itself, is very sad but I hope it puts him to rest and out of any pain or suffering. Definitely hope too the parents are able to find peace.

[Horus]

Very sad, I just hope the little soul passed away without any suffering or distress.