I think this is seen all over the hospital, just as another poster has pointed out in the trauma ICU, ED with adults and also in the PICU with kids.
I understand what you are saying, Julia, and my heart goes out to you because(in my opinion) you received some poor information to say the least.
But I do think that sometimes the severity of the situation just does not "hit" some of these parents even after it has been said numerous times and reinforced. I worked in the PICU last week and my 4 mo old anoxic brain injury pt was scheduled for his 2nd brain death exam. Now, the parents had been told in NO uncertain terms that there was brainstem function only and exactly what that means by an Intensivist and Neurologist and reinforced over and over by nursing and social work for 24 hours. The first thing the mother asked me when I did my assessment was if his "pupils were responding yet". And started telling the baby to open his eyes. Complete denial! Not because she hadn't been told, because she did not want to hear it.(I cannot judge because I do not know how I would react either). I cannot imagine this pain.
Of course he was determined brain dead after the second exam--- and I am always a little relieved in these situations, because the decision is then taken out of the parents hands.
Bottom line is that we do not usually know for certain what any premie will end up like...... but we need to be honest and forthcoming with all of the info, even if it is hard to hear.