To conclude our series of pieces on Charlie Gard, the baby with a condition so rare that it only affects 16 living humans, local media are reporting that he has died.
This has been a huge story in the UK for weeks. It has put to the test the notion that a hospital has a duty to babies in its care over and above the parents’. Although this may seem obvious, it is clear that Charlie Gard’s parents disagree.
How and when the state, whether through the agency of a hospital or otherwise, trumps parents, will be argued over in the future. What experts know, or don’t know, is being debated for many other reasons.
But underneath it all is the question of whether the taxpayer, who has funded the hospital care, should be represented by a hospital or by one set of parents. The answer should be clear. Of course any parent would want to prolong the life of their child. Probably indefinitely. But they cannot be allowed to represent us.
This sorry saga was dragged out even longer when the hospital lost its nerve in the face of international condemnation. That was cruel. But this was a genetic tragedy that began at birth, and was only drawn out so long thanks to technology and medical advances.
We absolutely sympathize with the parents at this sad time. At least Charlie’s memory will live on in the form of a research fund in his name.