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.
Well, I was going to try and write my blog daily, obviously that hasn't happened. I have done some house cleaning and the other night actually was able to clean my upstairs carpet. Good thing too, because along came that mysterious and evidently not rare enough storm that knocked out our power from Friday night until early Wednesday morning :(.
Of course this had to happen during the week when temps were at record highs in the area and even though we have a pool, that my husband had just shocked the heck out of, you can only swim in it for so long when the pump's not working. We eventually spent Tuesday night at a nearby hotel, which was heaven :).
Our poor doggy though was miserable because when the electricity did come on, all the bells and whistles of the security system and the smoke detectors were wailing away and there were no people at home to turn them off. It's hard when you don't have opposing thumbs!
So I suffered a lot of internet withdrawal and now have a really good excuse for not writing my blog.
On Monday, I get to go to the doctor's with my daughter and see "pictures" and hopefully discover the sex of our soon to be second grandchild. Modern technology is wonderful when it's working :).