23 weeks/ March 9

We went to meet with a genetic counselor at Emory today. I was so nervous and scared and really did not want to sit and listen to anymore doctors telling us that there was no way our baby would survive.
Carrie Crain was the counselor. She basically told us what Dr. Patterson had seen on the ultrasound. The long bones in the arms and legs were 2-3 weeks behind, the possible fracture, she said the bone mineralization looked good, and the chest was measuring normal. She also said that Dr. Patterson thought that there may be fluid built up around the forehead like the brain and that his eyes may be wide-set. She said possible face deformities. She said that there are two possible diagnoses OI type 2 or Camptomelic dysplasia. She said neither fit perfectly. Basically she said either diagnosis would be fatal. She again asked if we would want to terminate the pregnancy because we only had until next week. We told her NO. She told us of the possible tests they could still do for both. Finally Dr. Ferhoff came in to talk with us. It seemed as though he had never seen the ultrasound either and was only going off of what Dr Patterson said. He never mentioned it possibly being Camptomelic but he did talk to us about OI. He said at this point we dont know what will happen. He said the baby could pass away in the womb, shortly after birth, or he could live but possibly with a lot of problems, or he could be relatively fine. He said it was the full spectrum at this point. He said that the baby's fist were clinched which makes them think something neurologically could be wrong (this confused me because they concluded his fist are always clinched from 1 ultrasound!). He suggested that I would want to do a c-section and then after the baby is born to send him to Scottish Rite so that they could be involved with his care as well. Atleast he wasn't completely negative with us. When I had asked Carrie about the C-section she said no they wouldn't want to put extra strain on me when they didn't expect the baby not to make it anyway.
I was somewhat disappointed in the appointment. I thought we were going there to get Emory's opinion and not to just hear everything Dr. Patterson thought over again. Also from doing my own research I felt like I knew more about OI than the Carrie girl who didn't even know that Type 1 was the least severe. We were told there is no possibility for it to be any type other than 2 basically which makes no sense to me still!