A baby with spinal muscular atrophy battles for life and in the court. The case is whether life support can be withdrawn has an "intolerable life" the High Court has heard.//
A baby called MB, who cannot be named, is suffering from spinal muscular atrophy and cannot breathe unaided.
The baby in question is only 17 months old and is battling for life.
According to doctors, their medical advice, it is in his best interests to withdraw ventilation and to let him die. His family on the other side naturally say that he has a reasonable quality of life and should stay alive.
As any other family together and in distress they feel he can recognise and respond to them, and that he gains enjoyment from spending time with his family. “We are hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn,” said Baby MB's mother
According to the doctor in his statement to court said, "I think the cumulative effect of all this is that he has an intolerable life."
Baby MB has also been wearing splints on his hands and feet intermittently, which caused discomfort, and a risk of limb fractures would develop in relation to normal handling. Mr Justice Holman, judge said, "This case concerns a baby who requires constant ventilation and would die rapidly if it was removed."
His incurable condition, SMA - which affects one in 6,400 newborns, is set to lead to almost full paralysis.
In the views of his mother : "We want our son to have a tracheotomy so we could take him home and give him a life, instead of being stuck in a hospital. We are hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn."
Dr Andrew Whitelaw, professor of neonatal medicine at Bristol University, said: "In this particular case it may be that there are good periods, good days and that ventilation is justified in order to con
tinue to give this baby a good period. The point is that SMA does not get better - it is not one of these conditions for example brain injury where there is a real possibility of recovery and improvement."
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