Should Baby RB Live or Die?


by guest
8th November, 2009 at 11:55 am    

This is a guest post by Sarah Ismail. Sarah blogs here.

A one year old baby boy, who can be known only as Baby RB for legal reasons, was born with a rare genetic condition called congenital myasthenic syndrome and has been in hospital since birth.

Now, the hospital wants to withdraw Baby RB’s life support, because they claim that his quality of life is so low that it would not be in his best interests to try to save him. So his parents are going to the High Court- with his mother reported to be supporting the hospital’s bid. The parents are ‘amicably separated’ but both are reported to have spent long periods of time at their son’s bedside.

The father’s lawyers argue that Baby RB’s brain is not affected. He can see, hear and interact, and enjoys listening to music and being read to. They are submitting footage to the court, which they say show’s Baby RB playing with his toys. Christopher Cuddihee, a solicitor acting for the father, told The Sunday Telegraph: “This is a tragic case. The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment. “The father clearly adores his son and hopes to demonstrate to the court that the trust’s application should be rejected.”

Now for my reactions to this case. 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. 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.

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. Thanks to the support of their families, they have all led good lives, of which, I am sure, they would change very little. That’s why I have only good wishes for the baby, and I agree with and support his father’s efforts to keep him alive.

However, I understand and accept that this is a subject on which you may not agree with my opinion. So I’m asking you to share yours with us. 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?


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  1. pickles

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  2. Tanzeel Akhtar

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  1. Bearded Socialist — on 8th November, 2009 at 1:00 pm  

    I support the mother in this, and I don’t like the attempt to corner the emotion employede by Ms Ismail. She is deliberately emotive and provocative when that is not what’s needed.
    If the baby is unable to survive, then nature should be allowed to take it’s course. This life is only fleeting.
    I cannot make a proper rational arguement about this, but this is what I feel. That may go against my call for the author to be objective, but so be it.
    I have experienced this situation (life or death depending on the flick of a switch) and I am a carer for someone disabled, so I have some idea what I’m talking about

  2. qidniz — on 8th November, 2009 at 1:08 pm  

    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.)

  3. Don — on 8th November, 2009 at 1:35 pm  

    or should he die too soon, simply because a hospital is not prepared to provide him with the support he requires?

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

  4. douglas clark — on 8th November, 2009 at 2:43 pm  

    The same article actually says that a fresh medical assessment is to be carried out. This link to the Mayo Clinic suggests to me as a complete medical numpty that some forms of this illness can be treated, and at least one cannot:

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

  5. Naadir Jeewa — on 8th November, 2009 at 3:26 pm  

    A look on PubMed does suggest a large variation in severity and outcomes, just as the Mayo Clinic says. Many people live with the condition, many infants die from it.

    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?

  6. Rumbold — on 8th November, 2009 at 7:09 pm  

    Sarah:

    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.

  7. chairwoman — on 8th November, 2009 at 8:48 pm  

    As somebody who has become disabled rather than having been born disabled, I find myself increasingly disturbed that the medical profession is less and less inclined to use its resources to actively help the disabled and the elderly.

    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.

  8. Kulvinder — on 9th November, 2009 at 12:05 am  

    Resource limitation will always be an issue, and i think its perfectly fair to question the appropriateness of how money is spent. That may sound harsh but its simply an economic fact. NICE refusing to fund an expensive cancer drug that could save the lifes of a handful of patients and instead allocating that money to medication that helps save the lifes of thousands of other people doesn’t mean the medical profession or NICE are uncaring; as such having a discussion about whether funding care for this childs condition is ultimately worthwhile doesn’t mean anyone is suddenly advocating purges of the disabled.

    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.

  9. Philip Hunt — on 9th November, 2009 at 2:13 pm  

    Kulvinder: Resource limitation will always be an issue, and i think its perfectly fair to question the appropriateness of how money is spent. That may sound harsh but its simply an economic fact.

    The voice of sanity!

  10. Sarah — on 10th November, 2009 at 10:28 am  

    I've just read that Mr RB has dropped his objections to the withdrawal of the life support: http://news.bbc.co.uk/1/hi/health/8349954.stm

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

  11. Don — on 10th November, 2009 at 11:07 am  

    Sarah,

    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.

  12. Jorge — on 10th November, 2009 at 12:38 pm  

    There is no answer to your question. Each case is different and only the parents, those who love them the most, those who will be utterly devastated in either case, can decide.

  13. Jorge — on 10th November, 2009 at 12:43 pm  

    There is no answer to your question. Each case is different and only the parents, those who love them the most, those who will be utterly devastated in either case, can decide.

  14. katie — on 10th November, 2009 at 2:48 pm  

    I'm not sure that I, or anyone who does not care for baby RB can truly be able to comment on the right course of action, any more than the doctors and nurses caring for him can be 100% sure their decision to withdraw treatment is the right one. So baby RB's mental capacity is developing normally, but his body isn't developing and cannot perform any functions by itself. So he can listen to stories and music and his parents. He can watch toys, family, staff and cartoons and enjoy everything before him that he see's. I understand that it isn't his fault that he was born like this and he is likely to be fully aware of what is going on around him-however, how can we begin to understand the world from his point of view? We can't, we can only speculate. He cannot maintain his own airway and he cannot breathe-therefore he will die without a ventilator. He is unable to move or feed. He is beginning to develop painful physical complications from, in effect, being bed ridden-such as a curved spine. He has doubtlessly been resuscitated various times, battled severe infections, been saved by doctors and nurses multiple times when his ventilator tube has been blocked or displaced. He is likely to be on a huge cocktail of drugs and painkillers which will only increase as he gets older. He is likely to be on so many drugs that he probably isn't fully conscious, most of the time. However, if he is in pain and will continue to be the subject of life saving measures and resuscitation, is it right to keep his life saving ventilator going until the next emergency? or to sedate him and let him fall asleep for the last time-or to place a do not resuscitate disorder on him and allow him to die (likely to happen by being unable to breathe) the next time his ventilator tube blocks/becomes displaced? The only people that can make this decision are his carers and today his father joined his mother and his extensive medical team, nursery nurses, therapists, play specialists, care assistants and social workers and decided that he was suffering and they had to stop his suffering.
    So Baby will have a nice sedative drug, be put into mummy and daddy's arms without the drips and catheters and feeding tubes, for a cuddle. then they'll take out the ventilator tube and his mummy and daddy will cuddle him as he came into the world, until he falls asleep and leaves the way he arrived. Good night Baby, sleep well.

  15. Soapbox — on 12th November, 2009 at 10:13 pm  

    Sarah,
    Obviously things have changed since your initial post and baby RB is thankfully going to a better placed having been loved and cared for by his parents and dedicated members of the medical profession. I would however like to reply to some of the comments you made in your intial post which quite frankly fill me with anger above anything else.

    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.

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