I just finished reading “Making Sense of Brain Death” from the May/June 2010 issue and found it comforting—almost. My son was born not breathing and unresponsive 2.5 years ago. We were informed by the neonatologist that our son was severely brain injured and told that there was a “small window of opportunity” to withdraw support and provide only palliative care so that we would not be burdened with a special-needs child. Sadly, it just isn't true that families are never asked to “pull the plug” on someone who is alive. A neurologist told us that the tests indicated brain death, but he was not definitive about it.
At seven days of life our baby pulled out the vent himself and cried. He's a wonderful boy with a vibrant personality who just happens to have quadriplegic cerebral palsy.
It is encouraging that the guidelines described in the article exist. I hope they will be used.