A baby known publicly only as MB, has a degenerative disease called spinal muscular atrophy. The illness, which does not affect cognition, leads to total paralysis and eventually, death.
MB’s doctors want to take the baby off his respirator so he will die now. His parents want to love and care for him at home. The doctors insist MB should die now because his life is unbearable. But how do they know? True, none of us would want to become totally paralyzed. But who are doctors to say that MB does not and cannot have a life worth living?
Their arrogance brings to mind a good friend of mine, the late Mark O’Brien, and how angry he would be about this case. Mark was totally paralyzed from polio. He lived his life in an iron lung from the age of 6 to his death at nearly 50. Yes, his life was often very difficult. But it was definitely worth living, and he would blister anyone who said it wasn’t. He became a poet, a published author, and a wonderful biographical documentary was made about him called Breathing Lessons.
Mark knew what it was like to be written off by doctors. But he knew that the lives of disabled people are not the doctors’ or the bioethicists’ to denigrate.
What kind of hubris does it take for doctors to presume they have the right to decide that a baby should die rather than the parents be allowed to care for their child until he dies? If the Lords rule against life in this case, the people of the UK will be less free.