We had another meeting with Jocelyn's doctor today. Last week, he had the report which noted significant brain damage, but he had not seen the MRI or talked to the experts. I was hoping "significant" was not that significant.
It is. Jocelyn has almost no outer brain, that which controls higher functions. It seems the hope I was clinging to was unfounded.
In these cases, there is a high chance that she will develop seizures and babies in this situation have a 50-50 chance of making it through their first year.
As disturbing as that is, it is not the worst thing we may have to face. He brought up the subject of what measures we want to do to keep her alive, leading me to believe this is something we may have to face soon.
How can I make that kind of decision?
Parents are supposed to care for and protect their children. How can I not do everything possible to protect her? Yet, if her quality of life is so poor that she will never talk, eat, walk or even be aware of what is going on around her, is it really best for her to keep her alive artificially?
I do not want to have to face these decisions.