Who Decides?

Recently I read a blog concerning the care of children born with either Trisomy 13 or 18, which are syndromes considered "incompatible with life".  The blogger was concerned that because the child, who was born with Trisomy 13, had a "Do not intubate" order, although the parents wished the child to be intubated if needed.  This was a child born without the common heart and brain issues that many infants with Trisomy 13 have.  The parents did not find out about the order until after the death of their child.

One of the things the Mother of this child mentioned was that before Trisomy 13 and 18 were identified, children born with these syndromes were much more likely to live than after these disorders were recognized.  In my mind this means that the medical establishment predetermines what sort of lives these children will have.

My first question is,who are these people who have the ability to predetermine the quality of life of another human being?  My second question is, if we feel that their quality of life will be so poor, what are we doing about it?

Don't get me wrong, I have nothing against doctors for the most part.  But let's face it, most deal with a huge amount of information about diseases, illnesses, etc.  They are very knowledgeable people.  However, most know little about children with special needs and what they are capable of.  They also know very little about the quality of life of most of these children. I am not sure if I actually expect them to, however since they probably do not, I also do not want them to decide what my or any other child's quality of life may or may not be in the future.

I was at a TASH conference many, many years ago when I was pregnant with my second child.  I don't remember what session I was in, but there were many nurses in it who said they had witnessed a doctor simply let a child die immediately after birth because the doctor had decided the child would have no decent quality of life.  I made my husband, at the time, promise to be in the delivery room no matter what happened.