A shocker - our diagnosis

So, since Connor's head was a little longer than normal, our pediatrician sent us for some "just to make sure" xrays and CT scans, which we were told were all fine. We weren't worried, since our twins had really weird head shapes, and they were both fine. But she sent us for one final appointment to the cranio-facial surgeon to read the CT's as one final step. We assumed we'd be finished with this whole process after this last checkpoint.

Well, I went to the appointment, and was met by a staff of 7-10 nurses, nurse practitioners, and along with the cranio-facial (plastic) surgeon, and the neurosurgeon, where they proceeded to tell me that we were told the xrays and CT was fine, but they weren't.

They said that Connor has Sagittal Craniosynostosis, would require surgery in the next 4 months. Two of the bones on the top of his head had prematurely fused together, and this only happens in one out of every 2000 babies. They continued to throw a lot of information at me, such as, if he doesn't have this surgery, he will have increased intercranial pressure (ICP), possibility of learning or development challenges, inability to focus (probably due to pain), and even possibly blindness. I was COMPLETELY shocked! I don't think I've ever been so speechless in my entire life. I didn't know what to say. I knew I needed to ask some questions, but I couldn't form a coherent thought except - My baby is going to need surgery on his head! WHAT? You must be mistaken. He's perfectly fine. Look how happy and healthy he is!

I knew in my heart that we were going to go with the surgery, so I did manage a few questions to the doctors and then later the nurse, but they told me to go research it, and come back with my husband, and they'd answer all my questions.

I then checked out, with the nurse assuring me that the surgeons here are very good. I waited until I hit the parking lot before I burst into tears. I knew it wasn't going to be easy breaking the news to Dustin. When I told him, he was very angry. Angry that they misread the CT, angry at the "what if" we would have not rescheduled this appointment, and they never caught it.