Heather - posted on 10/18/2009 ( 9 moms have responded )
My baby has been diagnosed with occipital encephalocele, the whole occipital lobe is contained inside the encephalocele. The outcome does not look good. They tell me she may not be compatible with life and that they will do everything to make her comfortable. Was wondering if there are other parents out there finding themselves in my shoes or have been there. I am finding i am having a hard time with this. Plus she also has 3 holes in her heart that are fixable. I also have a 5 yr old daughter and a 2 1/2 yr old son, how do i explain to them that their sister may never come home?