Charlie Gard

I want to start this by saying that if you are looking to express your views on either side then it is welcome but do not come here looking for a fight. This is a very sensitive subject and needs to be treated appropriately.

Secondly I want to say how heartbroken I am for Charlie and his family. I can’t imagine what they are feeling and I hope I never have to. I understand why they are fighting and I know that if I was in their shoes I would fight just as hard.

If you have no idea who Charlie Gard or what the whole media storm surrounding him is about then take a look at this.

I have been around sick children. Luckily enough the vast majority of them will eventually go home well but you see a few that have problems, different to Charlie but they appear to have a similar quality of life to that of Charlie. I have seen parents refuse to sign DNRs even though you know that if that child has to go through another round of chest compressions you there is a very high chance that it will do more harm than good. But you have to do it anyway and by some small glimmer of hope they manage to pull through only to have to go through it all over again the next time the common cold ends up attacking them so mercilessly.

I’ve seen children who are not old enough to make the decision themselves yet have expressed their wish to not be resuscitated if the event were to arise. Their parents refuse to sign the DNR yet it is the young teenager that has to be put through the pain of CPR and carry on suffering with their illness again until life decides to give them another chance at moving on. (I phrase it this way because not everyone wants to carry on living with an illness). I mention this because Charlie is too young to tell us what he wants, but that doesn’t mean that his parents can tell us for him.

I am writing this because the staff at Great Ormond Street Hospital (GOSH) is being vilified by people on social media as monsters. Whether you agree with what they are doing or not it is important to remember that they have cared for and kept this little boy alive for 8 months, for which I’m sure his parents are grateful for. They have helped and continue to help millions of children. To see people tweet about never donating to this hospital again is disgusting. Sure you can donate (or not) to whoever you choose to, but do not tell people never to donate to them again as all you are doing is punishing millions of children all over the world who go there for help, I hope that your child is never ill enough to go there however I’m sure if they were you would not pass up their help and you would hate people claiming them to be murderers when all they are doing is their best. They are responsible for helping my partner and his siblings when they were born with complex esophageal problems. They are however humans and I know that they were unable to diagnose my brother who was born with Prader Willi Syndrome, the doctor who diagnosed him was from our local hospital. Prader Willi Syndrome is another illness that is not very well known and therefore doctors who have not come across it would not necessarily be able to identify it. Luckily the doctor at our local hospital had come across it about a decade before. Having said this my local hospital is not some amazing hospital, it is just any ordinary hospital that has it’s own failings. Every hospital does, no matter how great it claims to be will have some failings. That is the downside of humans. Human error.

Anyway, back to the point.

I can’t answer on behalf of GOSH. I do not work there, I do not know the ins and outs of the case. I am just trying to give people a different angle to look at based on the information we have been given through the media. This isn’t black and white. It’s not as simple as them ‘being mean’. There are many possible reasons why GOSH have made the decision they have and here are a few of them.

Why won’t GOSH allow Charlie to go the USA?

Transferring patients from one hospital to another isn’t all that simple when both the hospitals are in the same country, could you imagine what it is like when they are separated by the ocean? Charlie would have to be discharged from GOSH. Great, then he would have to be transferred across this ocean I just mentioned. Not that easy. Airlines have to be notified so that they can make adjustments. They would need the room for a specialist cot for Charlie, he can’t travel in a car seat or on his parents lap like other infants. He would need medical staff such as nurses (yes more than one would be ideal), a doctor and maybe even an anesthetist. They don’t just grow on trees and some agency staff are limited to what they are able to do based on what their agency covers. I have worked with agency nurses that aren’t covered to give IV fluids or medication. Then they get to the USA, maybe have their treatment and then come back to the UK. Now what happens if the treatment does not work and Charlie has to come back still on life support? Well not only do you have the transportation problem but his parents can’t just walk him back into GOSH and expect them to just take him. He would have been referred by another hospital before he went to GOSH and I can imagine he would have to be referred back. Even if he can be referred by this private American doctor they will still have to wait around for a bed for him. Beds aren’t easy to come by and Charlie and his family could be stuck abroad for days if not longer, running up medical bills that they can no longer afford and having to go through this heartbreak all over again and they cannot keep a bed open for him for 6 months. Let’s also remember that going to America, especially for several months, requires a visa which is another hurdle to go through. Yes Charlie’s parents have raised the money for his treatment but it is much more than that. It’s not just booking a flight and going to visit a doctor.

The treatment could save his life

It is an experimental treatment. Treatment. This means it treats the condition. This does not mean it cures it. It will not reverse the problems he currently has. “[Charlie] may be able to interact. To smile. To look at objects,” (BBC). No mention on whether he will forever have to spend his life on a ventilator. No mention as to whether he will be in pain or be able to swallow or do anything else for himself. A little while ago a man wanted to have a doctor assist him with dying because he was suffering from Locked In Syndrome and everyone was crying out for him to be able to choose to die. In the end he had to starve himself to death. This treatment could help Charlie interact a bit more, yet he could still be condemned to the same fate as this man. Living in a body that can do nothing more than the most basic of functions. Even worse for Charlie however as he can not even breathe for himself. Now the treatment itself is said to be rather non-invasive. It is only a simple pill. Now lets forget that all pills come with a risk of side effects. Charlie cannot swallow. Not only is he too young to take a pill. He physically can’t swallow it. This means it needs to be crushed or dispersed and put down a Naso-gastric Tube. From photos I have seen of Charlie he already has one. This (or an Oro-gastric Tube) is put down a person when they are ventilated as a way of ensuring that anything in the stomach can safely come up as they cannot vomit it up themselves. This doesn’t mean that Charlie is being fed this way. Charlie could be being fed by TPN. This is nutrition given to him via his veins. So we can’t say for sure that Charlie would even tolerate the treatment even though it is something as small as a pill. This experimental treatment is said to have worked on other children but none of them have been in the terminal stages. Even the doctor who offered the treatment then is claimed to have said that it would be like going into uncharted waters.

Why can’t Charlie go home to die?

I know that it would be nicer for his parents to take him home. To let him die in a place they find comforting. But to Charlie GOSH may be home. He has a bed there, he is used to the surroundings. His parents are there and the people that care for him are there. They want to be able to put him into a cot he’s never been in instead of a cot he has spent the last 8 months in. I don’t want to sound harsh, but I feel this is more for his parents than him. It may make them feel like it will make it easier for them, but what about later on, could they move away from the house he died in? On the other hand do they feel like they could stay in the house he died in? Leaving all that aside, there is the problem of having a portable ventilator, yes they used one so that he could have a picnic with his parents (see they do care) but that doesn’t mean that they can remove it from the hospital. What about having medical staff around? There will need to be some medical professionals at his home with them. He would probably not survive the journey home without ventilation so it is needed.

MRI

There is a photo of two MRI reports circulating the internet. Assuming these are real, they are also old. GOSH started talks of taking Charlie off life support in March. Two months after the latter MRI was taken. During this time a lot can happen and there is likely to have been another MRI that could indicate a lot of deterioration but of course we will not see or know about that report. I’m sure the courts would have needed these reports as evidence before they came to their conclusion. Also remember that the MRI reports are confidential and that even his parents had no right to take them and photograph them then distribute them over the internet. If it is found to be a member of staff at GOSH they will face legal action. So be careful if you decide to share them around. There are also many different tools to confirm brain death, I doubt an establishment with as much experience as them would confirm brain death without exploring all avenues.

But he can see

We have been told by doctors that Charlie cannot see. His parents claim otherwise. Just because his eyes open does not mean he can see. A person who is blind can open their eyes but that doesn’t mean they can see. Yes it sounds blunt but that is the fact of life. Opening your eyes is not an indicator of this. Medical professionals would have looked in the eyes and tested them for reactions and how they constrict and dilate before coming to the conclusion that he cannot see.

Charlie has not been sentenced to death. People are claiming that the doctors are playing God because they are deciding to intervene and switch off his life support, however if they had not intervened by putting him on life support he would not have survived long past diagnosis. You can’t say they are playing God by taking him off yet you were happy for them to play God and try to save him by putting him on it. It is a difficult time for the family and I hope that they have spent the last few days away from social media and with their family and Charlie. I hope that they feel the love and support pouring in from the public. No matter which ‘side’ of this argument people I know that above all they wish that family all the love they possibly could. I know that when the time comes each of us will still hope that Charlie manages to perform some miracle and just start breathing on his own. I know that the medical staff who have been lucky to have met him will cry when they go home.

Don’t say that this is what happens for having a national health service. When the time comes for Charlie to rest his parents will never be left with a massive bill to pay off for which I am sure they will appreciate. I can imagine it being a punch in the gut to have to deal with the death of a child as well as being left with millions of pounds worth of debt for medical treatments and funeral. So yes it may be easier to seek second and third and fourth opinions in the USA but you are also left with massive amounts to pay. Each country has their negative sides when it comes to their chosen health system.

People have said that even if the treatment doesn’t work for Charlie it could help path the way for others. This is great and it is how medicines evolve. But Charlie is not an experiment. He is a sick child. No one should be used as a guinea pig unless they want to be. Especially one that can’t tell us what he wants.

Parental choice is important but in such situations sometimes choices can be influenced by emotion and you may make a decision that you otherwise would not have. This is why the courts have had to get involved as an unbiased third party. They are there to advocate for the child and make sure that he is at the forefront of everyone’s mind and does not come second to how the parents are feeling. It may sound horrible but Charlie’s needs need to come above parents who obviously do not want to lose their child.

He is not and will not be the first baby to be taken off life support. We just do not hear about many because they do not cause a media storm. It is more common than you think and it happens for different reasons. This is not a one off occasion and I’m sure that you wouldn’t call every doctor that has had to take a child off life support a murderer. Sometimes it is not just about brain damage. It is about the quality of life a child will have. I’m sure you would not want to live your life in a body who has to rely on a machine to survive.

I sound a lot like I am on the opposite side to the parents I know. That is not my intention. I only want to stand up for a wonderful hospital. I, like many of you would love for Charlie to be able to have the treatment his parents are so desperate to have, but I also want people to know that GOSH are innocent and their decisions fully justified unless otherwise proven. And no that MRI does not count as proof.

GOSH are unable to stand up for their decision due to confidentiality policies. Hopefully this gives people food for thought before jumping in and accusing them of murdering a child or sentencing him to death. Maybe in their eyes they are protecting the parents from getting their hopes up only for it to come crushing down in six months time, the treatment is likely to do nothing but prolong the suffering and defer the inevitable to another day. I’m sure critising and shouting about never donating to Gosh again isn’t helping anyone who has a child in there to feel any better. GOSH is more than just one patient. Don’t forget about all the good they have and continue to do.

 

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