Life of Baby Boy Who Experiences Only Pain ‘Intolerable’, Court Rules

When is life not worth living? The High Court grappled with that fundamental issue in authorising doctors to withhold life-sustaining treatment from a baby boy who can neither see nor hear and experiences only pain.

The boy’s mother conceived him following a one-night relationship and was unaware of her pregnancy prior to his birth. She relinquished his care to the local authority on the basis that he would be better off living in an adoptive family. The council duly placed him in foster care with a view to adoption.

It later emerged, however, that he suffered from hydranencephaly, a rare congenital condition which results in some of the brain hemispheres not forming properly and being replaced by fluid. Only a brain stem and some deeper parts of his brain were present. He had been fitted with a shunt to drain fluid from his skull, but he remained at constant risk of potentially fatal infection.

In those circumstances, the council, with the support of local NHS authorities, sought judicial declarations that it would be lawful not to resuscitate the boy if his condition worsened, and that it would not be in his best interests for him to receive intensive care or artificial ventilation.

In granting the declarations sought, the Court noted that the starting point was the legal presumption that life should be preserved. However, the evidence pointed to the boy’s quality of life being minimal, if not non-existent. The likelihood was that he experienced no pleasure and that the only sensation he did have was one of pain. Describing the case as truly tragic, the Court found that his life consisted of nothing but suffering and reached the threshold of intolerability.

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