Well, I think protocols, and criteria, are always in flux in the medical field, in all areas, due as you say to more and more data being added, and more and more knowledge being gained...
For instance, in 1972 a friend of mine, had a 2 yr old daughter who had open heart surgery...something went wrong, not enough oxygen got to her brain, and the little girl came out of surgery, declared as being 'brain-dead'....now that was more than 33 years ago...my friend was assured that her little girl had a flat EEG, I think, repeated often...it never changed it was always flat...the docs recommendation was that the little girl be taken off the ventilator and allowed to die...my friend wanted to take her off the ventilator , but her aunt convinced her, that so long as the little girl was breathing, even tho it was by means of the ventilator, that she was 'alive', and that pulling the ventilator would be tantamount to actively killing the little girl...my friend relied on her aunts perception, and thus this little baby was sustained on the ventilator for a very long time...finally my friend did stop the ventilator and her daughter did indeed die...but she always bore guilt over that decision, as her aunt had somehow convinced my friend she was complicit in murdering her little girl...my friend would look at me, and ask me what I thought...my older boy was right around the age of her little girl, so it was a hard thing to try to answer...I honestly felt, that if her daughter was brain dead, it was more merciful to let her go...but 'brain-death', and its implications, was a new subject for people to deal with...
Fast forward to 1985, and there I am faced with the exact same situation...my son, has had a massive cerebral hemorrhage, due to his leukemia....after the hemorrhage, the EEg shows minimal brain activity, but the docs tell us, that with the inevitable swelling of the brain, that my son will surely experience over the next few hours, he will become brain dead...which indeed was the case 48hrs later....they also did a series of other tests on my son at this point, to assure us that he was indeed 'dead'...he did not spontaneously breath when taken off the ventilator, the newest EEGs show no brain function, air flow studies showed absolutely no oxygen getting to his brain, and so on and so forth...and so for us, there was never a question of removing the ventilator...we had no doubts, that our son was dead...
A difference of 13 yrs between these two incidents...yet the pool of knowledge, and data, the research, all the available medical knowledge and our own understanding of 'brain death' had dramatically changed...
I cannot imagine your grief. I feel I could bear anything but don't touch my children! So sorry for you loss. My sister had a crib death - 35 yrs ago. I thought the pain would never end. They are always with you and rightly so.
I am so sorry about the illness and loss of your son.
Andyandmikesmom, I am so sorry for the loss of your son. I had no idea. The worst loss possible. You're in my thoughts tonight and forward.