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(Family Division, Peter Jackson J, 19 September 2013)
The 14-month-old child had down's syndrome and mitochondrial myopothy, which had required hospitalisation since birth. He needed continuous artificial ventilation. His condition was progressive and, ultimately, fatal. The parents wished for him to be moved home with a care package including long-term ventilation but the treating doctors believed this would be too burdensome for him. The NHS Trust applied for declarations that it would be lawful and in the child's best interests for ventilation to be withdrawn allowing him to die in comfort.
The medical evidence presented by the NHS Trust including the treating clinicians indicated that the child was suffering due to the medical procedures which were necessary to keep him alive and that he experienced no benefit other than life itself. There was no prospect of an improvement in his condition and while the benefit of life had to be given considerable weight in this case it was outweighed by the burdens on him of continuing to provide care.
The medical expert instructed by the parents asserted that he knew of many profoundly disabled children who lived in the community on long-term ventilation but upon further examination of the evidence, he had no experience of children with such a profoundly degenerative disease as this child.
There was no question that the child's family were extremely devoted to the child and would provide him with first-class care. However, continued long-term ventilation would be futile and would progressively cause him more and more suffering, while giving him very little in terms of any positive experience of the life that was being preserved by such intrusive medical intervention. The declarations sought by the NHS Trust were granted.
Following this judgment and before final orders were made, the parents were granted permission to submit further evidence but, sadly, before a hearing could take place, the child died.
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