Anthony “AJ” was born on a cold winter day in January 2009. He had a little trouble coming into this world and had to be born emergency C-section. He was perfect! When Anthony was 4 months old we noticed a ridge that ran down the middle of his head. We brought it up to our pediatrician on his well baby check up. He felt the ridge and referred us to Seattle Children’s Hospital’s craniofacial clinic.
We saw Dr. Lewis and she right away diagnosed him with Sagittal Craniosynostosis. We were sent for a CT scan and were told he would need surgery to correct this. We were numb. We had never even heard of such a word. We never would have dreamed our baby would need major skull surgery! Then I found Cranio Kids on the web. They saved me. I had such great support from the wonderful ladies on there. They made me feel all would be ok.
Anthony underwent a 5 hour surgery on October 6, 2009. We were surrounded by friends and family while at the hospital. We waited anxiously for word. When we got the call that he was out my heart leaped for joy. We rushed down to the PICU to met with the surgeons. Dr. Gruss(PS) and Dr. Ojemann(NS) were waiting to talk to us. They said everything went well. Anthony’s skull was thinning and they said that it was good that they did surgery when they did. We went back to see our baby laying there in the PICU. At first sight I cried. He looked so different. His head was no longer narrow in the front, it was nice and round! Although it was amazing what they had done it was overwhelming to see my baby lying there and not looking like himself. I didn’t hold him for the rest of the day and finally got to the next morning. It was wonderful having him back in my arms. He was in the PICU for 2 days and 2 nights and then a regular room for the next 2 days and 2 nights. He amazed the nurses and doctors with his personality. He barely fussed. He just was content patting my face and snuggling even though he couldn’t open either of his eyes. We went home on day 5.
Before we left his sister Kalea joined us to see her brother after being away from him for so long. She was the only one who made him smile the entire stay. We took them for a wagon ride. It was great to see that smile again! Our Anthony was back. After our time at Children’s was over I vowed to never let another family have to go thru this alone. I have since mentored many other families who have gone to Seattle Children’s for cranio surgery. I feel blessed to be able to help these families during this hard and scary time.