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(Family Division; Sir Mark Potter P; 9 May 2006)
The child, aged 5 months old, was very seriously ill, having been born with a severe case of the inherited condition congenital myotonica dystrophy (CMD). The mother suffered from CMD of moderate severity and at the time of the birth neither she nor the father was in a position to look after the child. The child had therefore been made the subject of an interim care order, following which parental responsibility for the child lay with the local authority, although it was exercised in close consultation with the parents. The child continued to deteriorate and would inevitably die as a result of her condition. The parents felt that she was suffering unacceptably and should be allowed to die peacefully. Because of the interim care order the parents could not act alone in consenting to withdrawal of treatment, therefore the doctors treating the child sought a declaration from the court. The court had granted permission to withdraw mechanical ventilation or other forms of life support; the child had survived this withdrawal of treatment, but continued to deteriorate, seeming to suffer distress and pain. The parents and the hospital trust now sought permission to allow the removal of feeding tube, which would ultimately lead to death, arguing that this, combined with palliative care, was in the child's best interests. The presence of the feeding tube, although the only way of providing her with nutrition, led to infection and septicaemia at intervals, placing further strain on her already damaged liver.
The declarations were granted. There was no realistic sense in which the child had anything other than a life dominated by regular pain, distress and discomfort. It was a mercy and in the child's best interests to cease to provide nutrition while she was still clinically stable, so that she could die in peace over a comparatively short space of time, relieved by palliative care.
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