Never Saw it Coming

It turns out the we were wrong with our prognosis from earlier. What our unborn child suffers from is called Holoprosencepaly, meaning that the brain hasn't formed properly, and because there are missing parts to the brain this has affected the forming of the face.
As of the other day, my plan was,because the child will never have a life where it is even able to be conscious, that I would go to the hospital to be induced and birth the child. However, yesterday we learned that the insurance will not cover this procedure because my life isn't at risk. What they don't seem to understand is that my life is completely at risk because in the next 4 months ,and maybe even more, all of the emotional stress can and probably will come out physically.
The whole thing with the insurance still shocks me. We went through many avenues with the insurance. We had my husband's work call from the corporate level. We had my midwife call. We had my midwive's financial advisor call and nothing came of it. So now i'm forced to go through this pregnancy until the end whether the baby dies in utero, or comes out alive. This is a completely life changing situation that I never saw coming. I guess that nobody ever would.
If anyone reading this knows of any support groups with parents of children with this horrible disease i'd appreciate to be informed on this information. I'm doing as much research as I can and trying to live everyday just as that.