The Charlie Gard Case

[Jambalaya]

Charlie Gard is a British baby who has a rare disease. He can't breathe, swallow, move, speak, cry, see, or hear, and he has epilepsy. His disease affects his brain, heart and lungs, and he is severely brain-damaged. He survives on life support and a ventilator which breathes for him.

I heard about the case because Trump and the Pope have both offered him care, which as made global headlines. There is an experimental treatment that experts say cannot repair the brain damage but might help him move a little and grab objects. The treatment has never been tested on animals or humans for the strain of Charlie's disease. There is another little boy who had a milder form and was helped to a degree by the treatment.

Charlie's parents went to every court in the land including the European Court of Human Rights, and each ruled that Charlie is too sick for any further treatment, that he is in pain, and that the most humane course is to allow him to pass away. His hospital, Great Ormond Street, have won the legal right to stop treatment but have not done so.

Charlie's parents are fighting on.

What does everybody think? Should Charlie be allowed to go to America for the treatment, or should his parents switch off his life support machine?

 

[tyty333]

This is a heartbreaking case. I think it should be up to his parents...if they have people that are willing to help, and they want to continue, then they
should have the opportunity.

As a parent, and reading everything you say that there is to deal with, I wonder what quality of life there is to be had even if he does get help? Do we
keep someone alive at all cost because we want them to live (and we have the technology to possibly make it happen?) I dont think I can agree with
keeping someone alive at all cost without having some quality of life but who gets to make that decision?

 

[Hayley87]

There are a few sides to this, I believe.

First, when the original decision came down to pull his life support (thereby causing his death), his parents were barred from taking him home for palliative care until he died. Their son would be kept in the hospital until he died (already objectionable, I think), and worse, his parents were bound by regular hospital visiting hours. There was a good chance they wouldn't be present for their baby's passing. To me (and many others) this is galling.

Second, the hospital's reasoning for pulling his life support is to avoid undue suffering, a fair goal. Hospital officials claim that the experimental treatment "won't help." However, the entire point of experimental treatments is that they may help; the officials who claim it can't literally don't know. To flat-out deny the child's own parents this option (essentially holding their son hostage) is wrong--especially if he is as non-responsive as the hospital claims. What could it hurt?

Finally, it's a matter of to whom the ultimate care of his health belongs (because he's both too young and too ill to answer for himself), and this is what I think is most problematic. The financial side of the equation has been eliminated by donations; he's not a burden on the state. So how is it the state's right to decide that his life support must be pulled--especially if there's a last-ditch treatment that could be tried?

There's more to this than the pathos of an infant's death, I think, and that's why it's striking such a chord.

 

[OoohShiny]

Great posts, @Jambalaya, @tyty333 and @Hayley87 - I've not been keeping up to date with the news really so they are good summaries of the situation that highlight key issues.


For me, I'm not sure I would want to keep my baby alive if they were unable to interact with the world and relied on machines to keep them alive. IMVHO, I'm not sure science should always win over nature - such situations, although heart-breaking for the parents and all involved, are perhaps a sign that things "aren't meant to be" on this occasion.

It is a difficult moral/ethical dilemma - should we save life at all costs? Even if the cost is the long-term suffering / less-than-ideal quality-of-life of the person involved? Are we doing it because we personally can't bear the alternative option, to have the person's time in this world end at a point we deem to be premature? Should we live by 'if you love somebody, set them free'?

There are plenty of examples of individuals with extremely challenging personal circumstances going on to far exceed what doctors ever expected of them, which adds weight to the notion that we should try to preserve life at all costs, but do those achievements equal a full and fulfilling life? Who are we to judge what is fulfilling? Are they really happy? Even if they can't communicate it to the outside world?

And on the opposite end of the spectrum, there are also many individuals with such severe illness and/or disabilities that it means they will never live an independent life and will always need others to care for them. In that instance, parents become (often full-time) carers and their life changes completely. But what happens when the parents inevitably die? The individual involved could potentially have 50 years left on this planet (if the parents gave birth in their mid-40s and both died in their mid-60s, for example) - will their standard of care be guaranteed to be good for that entire time? What if they are the subject of abuse by a twisted individual who deliberately preys on the defenceless, or they suffer at the hands of someone who is just completely negligent and uncaring? If their entire existence is staring at four beige walls, hooked up to numerous machines, relying on others to feed, wash, stimulate and clear up after them, is that 'living' or 'existing'?


I'm not sure there is an easy answer or even a clear answer - every situation is different. I am personally not sure I could cope if we had a severely disabled child, and I have so much respect for those that do, but I guess it is perhaps a bridge that we don't really know how to cross unless we have to deal with it, and everyone will deal with it in their own way.

 

[Snowdrop13]

I feel hugely sorry for everyone involved in this case, not just the family but the intensive care staff too. It is very unusual for medical staff in the U.K. to resort to asking the courts for a judgement, care plans and decisions about end of life are usually made by staff and family combined.

This poor child cannot breathe, move or eat and never will. I completely understand a parent wanting their child to stay alive but the child's best interests might not be served by doing that.

 

[Austina]

Setting all emotion aside, the issue as I see it, is that without machines, he's not alive, in fact medical experts say he's suffering. As a parent, I would not want my child to suffer, nor be so totally dependent on machines, that without them, my child could not survive.

The point has been made that just because medical science can, should it, and my answer is no. The parents raised money to take him to the US for unproven or tested treatment, to my knowledge they haven't paid for the months of intensive care he's had at Great Ormond Street. The NHS is under severe strain in the U.K. ideally money shouldn't be an issue, but is it fair to other children who could potentially be treated or cured if millions are spent on one child who has been deemed beyond help? What would the parents do if they got him to the US and the treatment made no difference? How long are they prepared to potentially let their child suffer, another month, another year, another 10 years?

It is very rare for the State to intervene to this degree, but presumably, there's been a lot of expert medical advice sought, before effectively removing the parents right to decide.

When I was at school, my friend's sister was knocked down in London going to see the Christmas lights. She was left severely brain damaged and comatose. Her parents always clung on to the hope that she would wake up 'cured'. Day after day they sat by her bedside, their lives, and that of my friend, on hold. Year after year went by, with no change, until she died. My friend missed out on so much because her sister was the priority, and her parents couldn't grieve and try and to move forward all the years they clung to false hope.

 

[Jambalaya]

I was reading some more abut the case. Apparently the baby is too sick to be moved, which is why he can't go home to pass away.

Clinicians are very fearful that Charlie is in severe pain, and they say his frequent seizures are hard to get under control. Apparently the case has gone before four courts, all higher than the other up to the highest, and they all upheld the same verdict - that Charlie is suffering, his illness is catastrophic and irreversible, and that the most humane choice is not to prolong that suffering.

It's curious that Trump and others outside the UK have offered help when this case has gone to the highest court possible in the UK and Europe, and the ruling has held, so Charlie can't go to any of these places for treatment. The press says the family's legal options are exhausted. There is no higher court to go to, and the law has ruled that Charlie's misery should end. I wonder why the pope and others continue to offer help when it's not legally possible for Charlie to be moved. Their briefing teams must surely have told them that.

The NYT has said that in the last 35 years only two cases at Charlie's hospital have happened where the family and the doctors were at such odds that the two parties have gone to court. It seems the parents in this case just don't believe the doctors. Of course, the parents are totally heartbroken, but it seems this level of non-acceptance is quite unusual given the lack of cases that reach the highest court. I can't really know what I would do in their shoes. I'd like to think that I'd be very brave and withdraw treatment if my baby was suffering and there was no hope, but quite possibly I would react the way Charlie's parents have.

Ultimately, a helpless baby is suffering. I hope there is a resolution soon - either that the experimental medicine is taken to the UK and administered if that's what the parents desperately want, or that the parents face the unthinkable, because the current situation is just horrific.

 

[Ally T]

My 8 year old saw this on the 6pm news last week. We were playing a card game & I had the tv on in the background: usually I try to shield them from things they don't need to worry about unduly. (We are in the U.K.)

Her ears pricked up, she listened, then she asked me what was going on. The best way I could explain it was to liken it to my father. He had leukaemia & suffered HORRENDOUS complications 4 weeks into aggressive treatment. We wanted him to live. He was our dad & we needed to keep him. But we had to make a decision, and that was based on what was best FOR HIM. None of us wanted to let him go & switch that machine off, but it wasn't about us. You often have to stand back & do what is right.

Charlie Guard should be allowed to peacefully pass, in his parents arms. This is just my opinion. What kind of life will he have, by gaining a little movement in an arm etc?? He will still be where he is at right now. It breaks my heart from a mothers perspective, but I would let him go.

As an aside, when I was talking to my daughter about dad, who died 16 years ago this month, I got teary. I never talk about those details, they were hellish & the worst days of my life & she has never ever seen me cry. But that child crawled across the rug, sat across my lap & hugged me so tight! There wasn't a tear in her eye - it wasn't for her comfort that she did that. It was for my comfort. She pushed my hair back & kissed my cheek. I fully believe that at that moment she understood what doing right by others means

 

[Jambalaya]

ETA: Apparently the experimental treatment is an oral medication, so why can't that medicine be brought to the UK since Charlie can't be moved? It's not as if the treatment is a complicated surgery using machines and techniques only found in the States, for example.

There is the argument about his suffering, but flying the meds over with a doctor and administering it wouldn't take long, surely. (The only thing is, I'm not sure if it takes a long time to work, or if it's a long course of treatment.)

If the parents don't get the chance to do the experimental medicine, I'd be very concerned about them going forward. Not being able to try might just break them forever.

But on the other hand, the baby's welfare should come first and if the new treatment isn't quick, he could be in for weeks or months more of suffering to wait and see if it has any effect.

Talk about a dilemma. Charlie's medical team must be beside themselves with stress and sorrow, given that they know Charlie well now and given the global pressure.

 

[Jambalaya]

Alex - that's a lovely story about your daughter. xxx

 

[Jambalaya]

I am not a parent so my capacity to put myself in the Gards' shoes must surely be somewhat limited.

Parents: Think back to your firstborn. If he or she was in Charlie's situation, do you think you would be able to let him or her go? I'm interested in your perspective. I think I would, but I haven't grown and delivered and nurtured a child.

 

[Ally T]

Alex - that's a lovely story about your daughter. xxx

Thank you. It was difficult to explain to her the dilemma on the tv & how the love the parents felt, as any parent feels, is strong & fierce. I would have happily brought my dad home, machines, brain death & all, and kept him beating away in my home forever. And I told her this & explained that whilst it would have saved me from that vile & gut wrenching grief, what would it have done for my dad, what benefit? Decisions like that can never be about ourselves, they have to be about the patient. Always.

 

[Matata]

There is the argument about his suffering, but flying the meds over with a doctor and administering it wouldn't take long, surely.

Two children have received the drug with minimal improvement and both were not as physically impaired as Charlie. He essentially has no brain function. The drug will not make any difference in his quality of life. It will not regrow his brain. When I read more about his case, I began to get uncomfortable at his parents's insistence for the experimental treatment. If they want him to die at home, fine, but it should be done with whatever the British equivalent of hospice is so that he doesn't suffer even more as his body dies.

News reports today say the hospital will turn the machines off on Friday.

 

[Jambalaya]

Alex, I could not agree more with every word of your post above. It seems that the Gards' love and despair doesn't let them accept the doctors' verdict that Charlie is suffering and there is no hope, and that he must come first. I guess they just don't believe it. I think on the mother's fundraising page she says that he isn't brain-damaged and is improving, which the doctors say is impossible. I'm quite fascinated by the total disconnect between the parents and the medical team. Maybe the team didn't have any effective communicators and this is the result - the parents obviously don't trust what the doctors say.

 

[Jambalaya]

Yeah, I know. Agree with all you say. I'm only entertaining the idea because the parents are utterly, completely desperate, and if it would be quick to try, it might salve their own desperate suffering to some extent. Many of us think that they should put Charlie first and that this means ending his misery, but the parents are very, very far from accepting that.

(Above post is directed at Matata - I wasn't able to quote her for some reason!)

 

[Jambalaya]

Matata - I can't find any news reports that say his machines will be turned off this Friday.

There were many reports last week that said it would happen last Friday. Perhaps that's what you're seeing?

So yeah, the hospital were due to turn them off last Friday but they evidently haven't been able to bring themselves to do so when the parents are so desperate and so unaccepting. Legally they have the right, and medically they are sure of their verdict, and yet...and yet...they are giving the parents more time - while knowing, at the same time, that their patient is suffering every day.

I'd think the team at that hospital is being driven over the edge with the stress of it all. On the one had they have their duty to the patient, who should come above all else and who you believe to be suffering and in a hopeless position, and on the other hand you have a family who will not accept any of that and who might well go postal if you withdraw treatment. And even if they don't, imagine forcing the treatment to be withdrawn in the face of such parental opposition?

 

[Jambalaya]

Matata - isn't your husband a doctor? What does he think about it all?

 

[Matata]

Matata - I can't find any news reports that say his machines will be turned off this Friday.

Bah, I can't find the source now. I was scanning quickly through CNN, BBC etc this morning and saw the reference to last Friday and that this Friday was the new scheduled date. Sorry Jambalaya.

I'm not liking the politicizing of this little boy's life due to the pope and trump voicing their inexpert opinions. There is global outcry over this case which should have been, IMO, a private matter between the parents and doctors. Something isn't sitting right with me about the parents behavior.

 

[Matata]

Matata - isn't your husband a doctor? What does he think about it all?

He is a pediatrician and he would advocate for terminating life support.

 

[Jambalaya]

Thanks, Matata.

Agree about the global outcry and the politicizing of Charlie.

Apparently the parents say that he is not brain-damaged and he is improving, when the doctors say the opposite.

The medical case involved Charlie's team, a specialist team from Barcelona, four second opinions, and another doctor found by the parents. Their collective evidence is what led to the legal verdict. Because the case has been judged in the highest court, the legal options are exhausted and the court has ordered Charlie's treatment to be withdrawn. According to the NYT, senior British legal sources have said that the hospitals' hands are now tied, they are obliged to follow the judgement of the law, and that to get the decision overturned would require another case. The Gards don't believe this. They say that the hospital could let Charlie travel if they wanted.

Seems the Gards will not accept anything they're told even though the best medical and legal minds available have been working on Charlie's case. I wonder why they're so 100% resistant to the things they've been told. They don't seem to believe or consider at all that Charlie might be in pain.

Maybe they're too terrified and panicked by the thought of him not being here that they can't think straight, or maybe they or their loved ones have had bad experiences with doctors in the past.

 

[Jambalaya]

The latest is that two New York hospitals have offered to admit Charlie.

I wonder why nobody seems to understand that the highest UK and EU courts have made their final ruling.

And meanwhile, a helpless baby suffers on.

 

[partgypsy]

It's heartbreaking, but every once in awhile this happens, where denial in the family is so strong will not listen to what the providers are saying. Providers do not like saying bad news, and minimize it, and instead focus on the small unlikely positive outcome. So that it has come to this means there is a serious disconnect. Probably the clinical term is adjustment disorder parents cannot adjust to new reality. Reminds me of the Terry shiavo case, where the parents maintained she was aware and responding, while the medical community stated they were involuntary movements.

 

[whitewave]

I think it is too late at this point.

I think they should have been allowed to seek treatment *when they were at a point* where even a theoretical benefit existed.

 

[whitewave]

Is he brain dead? I think he is more pvs?

 

[Jambalaya]

I don't know the difference, actually. I just know that many doctors have testified that Charlie is severely brain-damaged and that this can't be repaired - even the doctor offering the new treatment admits this - and that Charlie can't breathe, cry, swallow, move, speak, hear, or see, in addition to having severe frequent seizures.

I read a bit more. The parents don't believe he is blind and don't believe he is in any pain, and they don't believe the judgement from the Supreme Court is binding.

The level of denial is really amazing, but I also found out that they have not been to their home for eight months. They live in a room at the hospital and have given up work, and the father is at Charlie's bedside 10am to midnight, while the mother is there from 11am to 4am the next day. Also, the mother is a carer for young adults with learning difficulties, which probably informs her position regarding her son.

I think such immersion has resulted in tunnel vision and a lack of perspective.

One thing occurs to me: If they are at the bedside so much, even if they believe he's not in pain (he can't express it even if he were), don't they witness those frequent intense seizures? And if so, how can they bear to watch him suffer like that?

I think their grief, pain, and living permanently at the hospital without a break (not going home once) has affected them.

 

[Jambalaya]

There's a piece in the NYT saying that Charlie's parents should be allowed to decide his fate. Other news outlets are putting forward their various opinions, hospitals in New York have offered to take him, as has a Vatican hospital, and I think one somewhere else too. Debate in the media continues to rage, and Trump and the Pope are in the fray, with Trump promising to being it up with Theresa may at G20.

One thing strikes me in all this: Why do none of these people seem to realize that it's over? The Supreme Court and the EU Court of Human Rights has spoken, and there are no more appeals - there was already an appeal. It's done. It's over. There is literally no further legal avenue to take. So why does the media continue to plead? The Supreme Court's judgement is final. I can't understand why the media seems unable to understand that. I could understand it if hearings and judgements were still pending, but it's done and the media/public figures are still carrying on as if the case were open. I find that really stupid.

In addition, the pressure on the hospital is horrendous. On the one hand they've got a family who will not listen to the doctors and insist they know best coupled with a truly horrific amount of public pressure, and on the other hand they have the weight of the law on their backs to carry out the final judgement and also a patient who is probably suffering. At this point, the state could prosecute the hospital for not carrying out the court's orders. The pressure on the hospital from both sides must be indescribable for the decision-makers. Thank goodness that the vast majority of cases this grave are solved with mutual agreement between the families and medics. Imagine going through this with every family!

 

[Matata]

I think the parents have done a good job of marketing their issues and have generated the expected pathos that accompanies painful and emotional situations such as this. I've seen it stated repeatedly in articles that the general public believes the hospital should not "play god" when deciding Charlie's fate which ignores that the doctors and the parents have already "played god" by providing medical care in the first place.

 

[Jambalaya]

Exactly - if it was left up to God/fate/whatever deity or spirit a given person might mean, Charlie would have died eight months ago.

 

[GliderPoss]

I sympathise with the parents but essentially this is about the QUALITY of life for the child. Holding onto false hope or extending (potential) suffering is actually a very selfish thing to do! I think would be best let nature take its natural course of action - allow the parents to remain at the hospital and let the child pass away in his own time surrounded by his loved ones.

 

[Austina]

In answer to your question, as a mother, I couldn't bear to think of my child suffering day after day. When I was pregnant, we discussed what we'd do if something catastrophic happened, would we insist on medical intervention at any cost. The answer was no, we would not have wanted our child to be hooked up to machines in order to 'live' and be so damaged they had no quality of life.

The parents are using the media to to further their cause, (for what reason I really don't know) while the hospital, because of confidentiality laws, can't comment publicly.

They want to take him home, which the hospital can't allow, because he will be in pain and suffer. They need to accept that there's nothing more that can be done, and let him go peacefully, and the rest of the world needs to butt out.