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Judge endorses father's withdrawal in baby RB's case

10 November 2009

The father of RB, the 13-month-old child suffering from an incurable muscular disorder, has withdrawn his objection to turning off the support machine that has kept the boy alive.

Reporting restrictions remain in place for the time being, meaning that the parents and the child, as well as the hospital, cannot be named.

AB, the father, disagreed with the mother, KM, and doctors at the hospital where the child is being cared for, but he changed his mind this morning.

As a result the case has now ended and no judgment will be given, but Mr Justice McFarlane issued 'Words of Endorsement' in support of the father’s decision.

Following a six-day hearing, the judge said both he and the father “have travelled a similar path down the evidential road and have now reached the same conclusion”.

“AB could, if he had wished, have left the responsibility for taking this decision to the court. He has not chosen to do so. He has, no doubt with a level of sadness that has already been experienced by KM, taken that responsibility upon himself,” McFarlane J said.

The court heard from one of only three experts in Europe on congenital myasthenic syndrome that no cure existed for the condition.

Three drugs were known to be effective but all depended on identifying the particular genetic malfunction, which had not been possible in RB’s case.

“RB has been trialled on each of the three known drugs,” the judge said. “Tragically he has not shown any effective response and the prospect of effective treatment for him, which would involve both identifying the defective gene and relying upon the development of a new pharmaceutical, must be many years down the line.”

Tracheostomy, an operation involving the creation of an incision in the throat to allow the passage of a tube connected to a ventilator, was once considered as the option allowing RB to live.

McFarlane J commented that this course of action “rather than being a panacea, would simply open up the potential for him to have to endure a further range of procedures and operations”.

“The very living of life itself, day by day, hour by hour, is likely to be at best uncomfortable for him and, more probably, regularly painful for him,” he said. “The medical evidence is to the effect that he is likely to feel pain and discomfort in the same manner that any baby does, yet this little boy with his inscrutable features, immobile limbs and soundless voice often gives no outward sign of that which he is feeling.”

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Discrimination Children Costs Local government