I find this whole situation truly heartbreaking...there are never going to be any winners. But, recently I have also found myself getting quite angry too.
I've been an ICU nurse for around 10 years (adult, not child) and have been devastated to hear some of the derogatory comments I have been reading about GOSH and the team caring for Charlie (not on here may I add). We, as a multi-disciplinary team (nurses, doctors, physio's, dietitians etc) are not the heartless people some are making us out to be. End of life decisions and the withdrawal of treatment are not something we decide about on a whim....with an adult, let alone a baby. This can often take days or weeks. We assess the situation daily if not more (the nature of ICU can mean things can change quickly). Families are ALWAYS involved and we will not do anything in terms of removing support without consent. Although, not to this extreme, I have been involved with many families who refuse to accept that their relative is not going to survive.
I only know what everyone else knows about the specifics of Charlie Gard but I can shed a bit of light about the ICU aspect.
Charlie is incredibly brain damaged, this is irriversable, brain tissue does not recover. However, there are different variations of damage and different part of the brain affect different bodily functions. So, a person may be able to breath without a ventilator but not cough for example. This would result in long term tracheostomy and regular suctioning to try and prevent chest infections. Being brain damaged is not the same as being brain stem dead. There are 6 tests undertaken for brain stem death testing, all of which there must be no response to, if there is any response the patient is not brain stem dead. However, the exclusion of brain stem death does not exclude catastrophic brain damage.
Being on long term ventilation is not good for anyone. When we decide to go down the route of intubation and ventilation the aim is to get a patient of it as quickly as possible. There are risks of infection, it affect the heart and kidneys. To tolerate the tube a patient will need to be kept sedated to counteract the gag reflex. There is muscle wastage, like anything....if it's not being used it will become weak; lungs are no different. Artificially inflating and deflating lungs is not the same or as effective as spontaneous ventilation.
A PP asked how long can a person be kept alive for artificially. It's difficult to say, in theory a long time with the use of medication and machines. We can support lungs, kidneys, heart and livers but there is a bit of a cascade effect; once one is being supported due to failure...others will follow. There does become a point where no matter what we put into the body to support it, a person still dies. Blood chemistry can alter to a point where it is incompatible with life, medication used to support the blood pressure can only be increased to a point where it stops being therapeutic and becomes toxic. Make no mistake....this is a horrible way to die, there is absolutely no dignity.
Many have asked why can't Charlie go home. My guess would be, legalities aside that he is too sick to survive the journey. Some patients on ICU are so incredibly sick they can not even be moved up the bed. Transferring a critically ill patient is risky. It would be awful for Charlie to die in the back of an ambulance.
Withdrawal of care in hospital would mean Charlie is safe. The team would do everything they can to make it as peaceful and dignified as possible. ICU is the one place you will have 1 nurse looking after you throughout. They can dress him in his favourite pyjamas, play music etc.
As I said, I don't know any more about Charlie than what the general press has released but I just want to try and shed a bit of light on the workings of an ICU. The staff at GOSH are not monsters, they will be acting in Charlie's best interest and I bet the emotional toll on them is awful.