Fight over life support for disabled boy

Father fights to stop hospital withdrawing life support for baby son

I read a disturbing story in the Guardian this morning, which was reported across various other newspapers and in the BBC, that the parents of a young boy were fighting each other in court over whether to turn off his life support. The boy has a rare neuro-muscular condition, Congenital Myasthenic Syndrome or CMS, which inhibits muscle control and causes visual impairment.

His father says that he has videos showing the boy playing with toys and that he is not mentally impaired, can see, feel and hear, recognise his parents and enjoy listening to music and being read to. He opposes turning off his son’s ventilator and has suggested that a tracheostomy (a hole in his neck into his windpipe) would enable him to come off the vent and go home. (More: Wheelie Catholic, Sanabitur Anima Mea.)

Although there has been progress on this case today, with the hospital agreeing to try out the father’s trache idea, it’s still disturbing to think that being paralysed is considered enough reason to end a child’s life, whether the child is vent-depdendent or not. It should be remembered that this isn’t an adult like “Miss B” from 2002 who decided for herself that being paralysed and on a ventilator meant that her quality of life was too low to go on — and most adults in this position do not do this. This child has never known otherwise, and his mother has no right to have his life ended, just because she doesn’t like to see him that way, when he cannot understand enough to speak up for himself.

I know a couple of people whose conditions are similar to his, one of whom is on a vent and the other is blind and paralysed (less globally, but more profoundly than this boy). I suspect that both would be very resistant to people telling them their lives were not worth living by people who would hate to have to live that way themselves.

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