June 25th, 2008 was our next ultrasound with the perinatal specialists. We walked in excited to see our little girl again and make sure that she didn't have any additional breaks. We had also come up with the standard questions ... Is there anything I can take or eat to help her be stronger? Does she break because I am too rough with her? Does she feel pain with her broken bones?
The same ultrasound was done - checking out the bones, the organs, etc. Her arms and legs were even further behind - about 7 to 8 weeks now - and one of them looked a little "bowed" which they told us was normal due to the way a bone would heal itself from a break. We got our questions answered and then a different Doctor came in to talk to us. His first words? "I am so sorry you are having to endure this fatal pregnancy." Again - devastation. Here we had convinced ourselves how lucky we were because we only had to deal with the "brittle bones" and the problems associated with that. Now he was saying we had a "fatal pregnancy". This is something that we were told only occurred with a Type II OI baby. We had been told that there was a less than 9% chance that there would be that drastic of a change from the previous ultrasound to this one. What was going on? I think that as soon as the words left his mouth he realized that we were unaware. I asked him what he meant and he proceeded to explain to us that her chest cavity was behind in size and that her heart/lungs were taking up just under 50% of the capacity. It was in the 5th percentile of size and anything between 5 - 10% was risky. Anything below 5% was considered fatal. Basically we were being told that our baby was not expected to live longer than 48 hours after birth. I asked if they would take her early or what we would do and was told that we just continued on until her birth, hoping and praying that things would change. So that is where the roller coaster ride began.
3 years ago