Stacy, first of all, I hear you. I agree that we must be completely honest - some might say brutally honest - with parents when we discuss outcomes of extremely premature babies. I not only tell parents the chances of a child having major or moderate disabilities, such as varying degrees of the afore mentioned CP and mental retardation, but also try to convey to them that children classified as "normal", because their motor and mental capabilities are in a normal range, still have an increased risk of what I call "soft" neurological problems, such as learning disabilities, attention deficit disorder, clumsiness, and so on.
On the other hand, though, I don't know how much good it always does, because the parents so often just don't seem to hear it. This is not a criticism of the parents; I think it's just part of what happens around the birth of an extremely premature baby. Not surprisingly, parents are not at their most rational and understanding at the time. They are both fearful about the prematurity and excited because they're having a baby. Also, the amount and type of information we have to give them about premies is difficult to take in at any time, let alone when they are in such an emotional state.
We still have to try, though, and I think most of us do. But how often do we mention it? Although I realize that we must repeat some things before they sink in, we can't be daily bombarding them with discouraging statistics. We have to give them some hope, because the fact of the matter is that there are still many reasons to be hopeful. A child may have attention deficit disorder or fine motor problems or emotional issues - but may still be the love of his or her parents' life, a huge source of happiness and fulfillment for them. (For that matter, children with mental retardation and cerebral palsy can also be a source of that joy.)
Often we are giving parents information about premature babies because they are trying to decide whether to have their extremely premature baby resuscitated or not. I understand that the prospect of a child having severe mental retardation and cerebral palsy, with a quality of life thought marginal or unacceptable by many people, can affect the decision whether to resuscitate or not - but should the possibility of having a more minor problem like attention deficit disorder make a difference in the decision to resuscitate? I'm not quite ready for that eugenic a society.
The other day I was talking to the parents and grandmother of a newly born 24 weeker. I told them the survival statistics, using both percentages (50 to 60%) and fractions (5 out of 10). I told them other outcome possiblilities, of the immaturity of all organ systems and the consequences of that. When I was done with my spiel I asked if they had any questions, and the grandmother asked, "When 24 week babies are born, do any of them survive?" I had just covered the subject in detail. Now I simply said "About half of them survive." That, I guess, is all she could handle at the time.