1. “I just can’t believe that the hospital would even consider withdrawing the life support, especially when you consider that people with Baby RB’s condition ‘can expect to live a relatively normal life with medication,’ according to BBC News”
I would recommend not using BBC News as your main informer of complex and rare medical conditions. Children with CMG are a hugely diverse population. Baby RB is at the very severest end and has not responded to the only treatment available. It may surprise you to know that doctors (with the exceotion of Mr Shipman) are not in the businees of killing people and the withdrawal of intensive care is only suggested when there is no hope, death is inevitable without intensive care or the treatment is too much to bare.

2. “Yes, Baby RB appears to be severely affected by his condition, but the most important thing to remember is that this is not his fault. He did not ask to be born with his condition, and I certainly don’t think he deserves to die as a result of it.”
Why do you think he doesn't deserve to die? If we feel that his life will only consist of suffering death is a very real and often very kind option. Children sadly die and it's the medical professions job to make sure it happens in as a peaceful way as possible. The withdrawal of intensive care will lead to his death and be decided by his parents and medical professionals who love and care for him.

3. “As a disabled person, I know several people who are severely affected by disability. They cannot walk and don’t have verbal communication, but they are all extremely intelligent”. I feel you may have missed the point here. People with disability should have access to everything they need and be given all the opportunities of able bodied people. Clearly there are 1000s of severely disabled people lving happy and enriched lives. They can however generally breath. Baby RB cannot breath, move, clear his own secretions, cough, indicate he is in pain, etc. He has never been able to be of a ventilator since the day he was born.

4. “Should Baby RB be allowed to live a life of the best possible quality for as long as possible, or should he die too soon, simply because a hospital is not prepared to provide him with the support he requires?”
Now this is really where I started to fume. Do you REALLY think the reason this has all gone to court is because a hospital is not prepared to provide the care? Unbelievable. You underestimate the emotional investment the doctors and nurses looking after this baby will have made. The sadnees and anguish they will have dealt with as they have built a relationship with this family. The sleepness nights encountered by the heads of the profession who have had to the extreme of standing up in court all because they want to do the best for an infant who they believe is SUFFERING. The medical profession as a whole and especially paediatricians really care and are not callous, economically motivated animals that you somehow suggest.

I feel sorry that Baby RBs family may read some of the drivvle that is written and feel guilt or a change of heart. They can only have come to this decision after months of anguish and NOONE should be judging them in any way. For what it's worth I am certain their decision is the right one.
End of rant.

It is very sad indeed. All parties seem to have been profoundly committed to the welfare of the child and the parents in particular have acted with dignity and courage in an agonising time. But in the end all agreed that the child would have a life of, at the very least, constant discomfort and possibly pain and would be unable to communicate this or anything else and that such a life would be torment.

Sad, but not shocking. In the end this was not about resources but compassion. If I were ever in that state I would hope for release.

I'm deeply shocked and deeply sad to read this.

The voice of sanity!

I don’t distinguish between a foetus and baby in such circumstnaces (i acccept others disagree). Unless you’re a pro-life advocate you won’t see anything controversial in partial birth abortions where severe disabilities are present, and i don’t see why its morally ‘worse’ to argue that its best to abort a foetus whose life wouldn’t amount to much than to argue its better to allow an extremely ill baby to die.

I think the best pragmatic solution; the one that has already been suggested in a past case, and the one that is effectively used with the old and infirm. Is to do all you can until a point is reached where resuscitation or constant machine intervention is needed (ventilator etc) and then allow the person to die.

It may be an arbitary point between the various factors that need to be taken into consideration, but at the moment its the best one we have.

My own mother’s death alerted me to the situation, and my second long stay in hospital on a medical rather than a surgical ward confirmed my suspicions.

My father developed Mysathenia Gravas and with medication managed very well.

I don’t think that this is an easy case for anyone; certainly no one wants to remove Baby RB’s life support because they blame him, or because they think less of him, but there is a real question or whether or not to do so. I don’t think I would, but I know for sure that I am glad I am not in that position.

NICE offers no guidance on the condition, so this certainly was no automatic “death panel” judgement as some Republicans had been spinning before the congressional vote. Since Baby RB is at least a year old, this suggests he was unresponsive to treatment.
I’m sure the trust, with the mother, haven’t made the decision lightly.

Since a fresh assessment is now happening, this suggests the system is working, no?

http://www.mayoclinic.org/congenital-myasthenic-syndrome/

I believe this is known as ‘poisoning the well’.

especially when you consider that people with Baby RB’s condition ‘can expect to live a relatively normal life with medication,’ according to BBC News.

That is nowhere near the full story, according to the very same article in the BBC news.

The severity of the condition varies widely, and where Baby RB’s case locates in the range is not stated explicitly, except that we can conclude while the situation isn’t as bad as a neonatal fatality (which can happen), it’s pretty severe nonetheless.

The hospital’s “quality of life” argument presumably means that Baby RB would have to be on a ventilator (and thus in all likelihood confined to a hospital room with such a machine) for the rest of his life — that there is no other option, never mind “a relatively normal life with medication”.

Whether this is in fact the case would have to be decided by medical experts. So, what if an independent evaluation ordered by the courts agreed with the hospital (not on the estimated quality of life, but on the objective requirements of further life regardless of quality)?

The difficult part here is in fact the legitimacy, or admissibility, of a quality of life argument. Are there any circumstances in which QoL can be a valid reason to pull the plug?

If not, then Baby RB would have to be maintained as long as the technological means existed. If yes, then someone will have to pass judgment on Baby RB’s life prospects.

(Personally, I wouldn’t decide on the basis of a news article, but as a general rule, I believe there is a floor to quality of life below which I would have no qualms about the plug being pulled.)