Ezra James was born 10/24/13. His Pediatrician had noticed something strange with his head shape when he was about 5 months old. She immediately sent us to get an x-ray. When she got those results she told us that she wanted us to go up to OHSU for a CT scan. I then became extremely nervous. To me my son was perfect and I didn’t think anything was wrong with him! We went up about a week later for the CT. Waiting for those results felt like an eternity. But finally they called us back and told us that our doctor was smart to send us up there. They told us that it was possible that he would need a helmet or worst case he may need surgery. Two surgeons walked in and sat down telling us that they were going to do surgery and walked us through what he had and what they had to do. Had had sagittal synostosis! I remember thinking “What the heck is it and how did he get it?”. They also told us that if he didn’t get the surgery that he could have major delays such as not walking at the age of 2 or after and speech could be very delayed as well.
We scheduled his surgery for 5/13/14.
The day came way to fast. While we waited we had him changed into his little white gown with elephants on it and he has started to get a runny nose. The surgeon almost sent us home because of it, BUT thankfully they made the decision to proceed. So we walked him back to the doors and said our “see you soon’s” and the wait began. With family by our sides we waited. 6 hours later, they came out and told us he was going to be in recovery soon. So we went there and met him in his room. I remember the look on his face like it was yesterday. He was so groggy still from the meds. He had a tube from his head for drainage and IVs in his legs. I was so scared but I kept telling myself that I needed to be strong for my family and I could not let them see me cry.
We stayed at OHSU for 4 days. Through that time, he was becoming more and more like himself and all I could do was smile and be thankful!!
He is now going to be 2 next month and is full of craziness and fun! We have been to a few follow ups and they tell me he looks AMAZING and he has a PERFECT head!
I could not be more thankful to his doctor who caught it early enough and the surgeons who kept my son safe and helped him to live a normal life!