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(Family Division; Holman J; 15 March 2006)  2 FLR 319
The 18 month-old child suffered from severe spinal muscular atrophy, an incurable and degenerative condition. Currently the child was severely disabled, unable to make any voluntary movements other than with his eyes, and, very slightly, with eyebrows, corners of mouth, thumb and toes. He could not breathe unaided, and had been ventilated for over 6 months; he could not swallow and had been intubated for over a year. He had a relatively short life expectancy measured in months rather than years. However, the child was conscious, with sensory awareness and seemed to have full cognitive function. The trust caring for the child, concerned about the discomfort, distress and pain suffered by the child on a daily basis, queried whether the childs life had become intolerable and sought authority to discontinue ventilation. The parents opposed this, arguing that the child had a reasonable quality of life based in large part upon his interaction with his family.
The judge held that it was not currently in the best interests of the child to discontinue ventilation, although it would be in the childs best interests to withhold procedures which went beyond maintaining ventilation and which required the positive infliction of pain (eg cardio pulmonary resuscitation, blood sampling, administration of intravenous antibiotics). Notwithstanding that the child suffered almost relentless discomfort, periods of distress and relatively short episodes of pain, he also continued to have relationships of value to him with members of his family and to gain other pleasures from touch, sight and sound. These were precious and real benefits, the only benefits the child was destined to gain from life, and were not outweighed by his suffering so as to justify ending his life. As the child's condition deteriorated, withdrawal of ventilation might eventually be in childs best interests.
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