A Colorado family is mourning this week the death of a son who was born without a brain. Although anencephaly – a condition in which babies are born with only a brain stem – affects 1 in 10,000 births, most live only a few hours or days. Nickolas Coke lived three years before succumbing to pneumonia.
Because he lacked a brain, Nickolas could not speak, walk, or eat. He often had seizures. But his family regarded him as a treasure. “He taught us everything, he taught the love, how to be family. He taught us everything,” his grandmother told local media.
“Not good” is an understatement.
The author’s account of the handicaps of the baby makes them sound far less serious than Nickolas’s. But the parents are normally insistent, because of their “dashed hopes”, the long list of operations, and the child’s uncertain future. They are the surrogate decision-makers; what they want is what counts.
But, he writes, parents are unprepared for what comes next, after nutrition and hydration are withdrawn.
“I try to prepare them for the coming collective agony that we will undoubtedly share, regardless of their certainty about their decision. I know, as they cannot, the unique horror of witnessing a child become smaller and shrunken, as the only route out of a life that has become excruciating to the patient or to the parents who love their baby.”
The slow demise of the baby is shattering for everyone involved, from the cleaners to the doctors. The parents become so appalled that they cannot bear to stay with their child and stop visiting. The hospital staff are left alone and become divided and angry.
“Some say withdrawing medically provided hydration and nutrition is akin to withdrawing any other form of life support. Maybe, but that is not how it feels. In action, it seems like withdrawing a ventilator from a patient in an atmosphere of 0% oxygen.”