As some may have seen on Chris or my Facebook, our Chloe has "severe atypical primitive holoprosencephaly" which is similar to hydranencephaly which we originally thought it could be. But we remember that Jamie the genetic counselor said it could be holoprosencephaly.
Dr. Twickler was very nice and helpful, she showed us the MRI images and gave us a cd of them as well, as she had shown on an image Chloe's brain didn't form properly like we thought, and it appears that there is just primitive tissue in her skull that has fluid in it, and at the back possibly some cerebellum tissue as well. She stated what we had an idea of in that Chloe may not make it to deliver, or be able to live much after birth. She actually said what Dr Bruner said when she described this happening as a lighting strike. She let us know that for future pregnancies there is a very low chance of it happening again, unfortunately there's no cure, or reason why this happens and as she said there was nothing we did to cause this. She also said the images appear that Chloe's limbs are already being effected by this because her legs are in a locked and curved position and don't appear to be moving much. Her legs are like that because there's not very many impulses from the brain stem to make them move, and unfortunately all of her movements are just reflexive movements, Chloe's not aware of anything she's doing as it's been put.
It's hard to still hear bad news, but we knew there was a very high chance we wouldn't receive good news. I think as Dr Martinez put it if you tell a woman what could happen she'll know what to do. We'll go back to our high risk Drs on Dec 6th to discuss the MRI results and I guess where we'll go from here, we'll also see Dr Martinez some time this week as well. I'll be sure to post another blog once we see them as well. Thank you to everyone's nice words and prayers we really appreciate all of them!
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