10 NOV 2009

(Family Division; McFarlane J; 10 November 2009)

The child had an inherited muscular disorder caused by a genetic defect, and from birth onwards was unable to breathe alone. When the child was 13 months alone the treating clinicians and the mother agreed that it was in the child's best interests to be sedated, taken off ventilation, and allowed to die. The father disagreed, proposing instead that the child should have a tracheostomy operation, so that he could be ventilated by a portable unit and could leave hospital. The issue was taken to court. Unexpectedly, after hearing the evidence, the father changed his mind, and agreed that it was in the child's best interests to be allowed to die.

The court issued 'words of endorsement', approving the outcome eventually agreed upon by the parents as the only tenable outcome for the child. Undertaking a tracheostomy and connecting the child to a portable ventilator would open up the potential for the child having to endure a further range of procedures and operations. The very living of life, day by day, hour by hour, was likely to be at best uncomfortable and, more probably, regularly painful for the child. The judge paid tribute to the very great commitment to the child demonstrated by both parents.

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