About

Craniosynostosis.

Thats a word that you have either never heard of, or just googled because it came with the word diagnosis. I was a new mother and was holding a 4 month old baby in my arms. We had arrived to a consult with a Neurologist as a precaution to what our pediatrician thought was just a large head. We were so wrong. The diagnoses hit me like a truck, and then backed over me, and continued to run me over, over and over and over again for about a week. And then I realized back in 2012 Craniosynostosis wasn't a popular blog topic. And I decided if I couldn't change anything, I was going to make sure other people didn't feel alone when a Doctor uttered the words, "I'm Diagnosing him with Craniosynostosis, we're going to need to preform a surgery soon."

Sawyer was born October 13, 2011. He was, as all mothers think, perfect. He was my first and I had no clue what I was doing. I struggled those first months easing into motherhood but by 4 months, we were good. We thought the world of him and never even suspected something was wrong. Which looking back is hard to believe. Because Sawyer's soft spot was closed at birth. And his skull started to grow only lengthwise. So from the front like the above picture, he looked normal, but boy from the side was it quite the sight to see. We were diagnosed at 4 months, had a CT scan done at 7 months, and surgery was scheduled for 8 months. Our Pediatric Neurosurgeon & Pediatric Plastic Surgeon were the best and I trusted them whole heartedly. They chose to do a full CVR (cranio vault reconstruction) Which means they took apart my baby's whole head. He has an ear to ear waving scar that I still see daily. A reminder that if the tiniest human can take on the world and survive it, I can get through my worst days. 

We spent 6 Days in the PICU at UMC in Las Vegas. We had family and friends surround us with indescribable amounts of love. People waited through the 8 hour surgery, visited the hospital, sent gifts for both Sawyer and us. It showed us who really mattered in our lives. Those people stepped up big time during Sawyer's cranio Journey. 

I left the hospital twice in those 6 days. Once to walk across the parking lot to a fast food place for dinner with my husband. And once to take a shower at a nearby friends house, only because she dragged me out and bribed me with fresh cookies. I just didn't want to miss a minute of being by his side if he needed our love. 

Sawyer did not clot like a lot of patients do, so he needed to have 7 transfusions those first hours after surgery. Which caused a lot of the reason's we stayed so much longer than a lot of cranio patients. He swelled and reacted poorly to one of the last transfusions. so much that his eyes swelled shut for 5 days. So we spent a lot of time playing music from his favorite toy glow worm. Someone even rushed a new one to us when ours died unexpectedly. Because he was so swollen I also couldn't hold him without a lot of help from nurses and coordinating a million wires and cords. 

Those days both seem like forever ago and yesterday at the same time. I now watch a healthy happy 5 year old run around my house, who has no idea what happened to him. He recently saw a picture of his head and the details of the scar, and told me it must be an easter egg. Because in a child's innocent mind, what else would that squiggly line on an enormous round thing be? 

While this new blog is under construction, I wanted there to be a place to know you are not alone. And leave a small piece of our story. But I will be working on bringing over every cranio blog post I made in the moment. The true, raw, real feelings of dealing with having a baby diagnosed with Craniosynostosis. I have helped so many other mom's through the anxiety of the journey and become close friends with them. We live thousands of miles apart, so many different countries. But connecting on the simple fact that another mom knows your exact feelings is a magical thing. If you are dealing with this right now, please reach out to me at alissa.klassen@gmail.com

You are not alone. You cant get through this. I'll help. 

with love, lissa