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Health Contents:  Medical notes

Wednesday, 15 March 2006, 11:23 GMT

Parents to learn sick baby's fate

Baby The parents of a severely disabled baby boy at the centre of a landmark right-to-life case will find out on Wednesday whether he will live or die.

They were fighting a hospital's bid to turn off the ventilator that keeps the child, known only as Baby MB, alive.

The 19-month-old boy has genetic condition spinal muscular atrophy - which leads to almost total paralysis.

Medics said his life is intolerable and that he should be allowed to die. His family said he has a life worth living.

The High Court in London heard how the child, who cannot breathe for himself and is almost totally paralysed, also cannot chew or swallow.

"There will be times... when a court will have to say that the best interests of MB are now served by withdrawing ventilation"
Huw Lloyd
Counsel for the hospital


He suffers from the most severe form of spinal muscular atrophy and has lived in a high dependency unit in hospital since he was seven weeks old.

A court order bans the identification of the boy, his family, the hospital where he is cared for and the medics involved in his care.

But details of the case can be reported after BBC lawyers made an application for the hearing to be held in public.

Mr Justice Holman, who is hearing the case, said it was probably the first time a court had been asked to decide the fate of a child who probably had some cognitive function.

Doctors at the unnamed hospital where Baby MB is cared for have told the court they believe the invasive ventilation which is keeping the child alive is likely to be uncomfortable.

Nursery rhymes

One unnamed medic told the court he believed the baby had an "intolerable life" and that he had felt uncomfortable about his treatment for a long time.

His parents, however, insist their child responds and recognises and enjoys their visits to hospital.

They told the court he enjoyed certain children's films they played for him and nursery rhymes which his brother and sister sing to him.

They want him to have a tracheotomy which could make long-term ventilation easier so he is able to leave his hospital bedroom and explore the grounds, albeit with the assistance of medical staff.

The child's father has told the court he did not think it was right for anyone to decide if the baby should live or die.

Counsel for the parents, Charles Foster, said in his final submissions that the application to switch off the baby's ventilator was premature.

'Agonising decision'

"The benefits/burdens analysis clearly comes out in favour of continued life," he added.

He urged the judge to proceed on the basis that the child had cognitive function as that had been the overwhelming evidence of the parents.

Huw Lloyd, counsel for the hospital trust, said in his final submission that the judge faced an "agonising decision".

"These are loving and devoted parents, but your lordship has to make a decision in the child's best interests and there will be times, and we say this is one of them, when a court will have to say that the best interest of MB are now served by withdrawing ventilation."

He added that all the objective evidence was that the case for the child being able to enjoy time with his family and recognise them was not made out.


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Related to this story:
Baby's dad says 'don't play God' (08 Mar 06 |  Health )
Life of sick baby 'intolerable' (07 Mar 06 |  Health )
Ben's winning battle against SMA (07 Mar 06 |  Health )

RELATED INTERNET LINKS:
Courts Service
Jennifer Trust for Spinal Muscular Atrophy
Alexander Harris Solicitors
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