We went to Seattle Children’s Hospital 2 weeks later. We met Dr. Birgfeld, who reassured us and really walked us through the diagnosis and surgery. We scheduled surgery 2 months from that day. Those were the longest 2 months of my life! Thank goodness for an amazing support group and family. Styles had his surgery on March 29, 2011. He is now 7 months post op and is doing incredible. He didn’t skip a beat and continues to amaze us with his energy and smarts. He loves cars, books, and rough housing with his big brother and Dad.
On Christmas Eve 2009 we welcomed our amazing Styles into the world. He was 3 weeks early because of pregnancy induced hypertension but was perfectly healthy. He was a happy, easy baby from the very beginning and continues to be that way now. Styles hit all of his milestones at appropriate times & other than having a large head for his age passed all his well-child checks with flying colors. At 6 months old my husband and I noticed that not only was Styles’ head large, but it was shaped a little different. Having 2 other children with very small, round heads, we thought it was something to keep an eye on. Again we brought it up at his 9 month check up & Styles’ pediatrician assured us that his head was normal just a little large. So at his one year check when it seemed to have gotten much worse we insisted that she look more into our concerns. When she felt his head she knew instantly that something “wasn’t quite right”. So she referred us to a local neurosurgeon and we waited 2 LONG weeks to see him. He took one look at Styles & diagnosed him with Sagittal Craniosynostosis and a Metopic Ridge. We went straight in for a CT scan which confirmed the diagnosis. He then referred us to Seattle Children’s Hospital.
So our journey and the endless research began. I of course googled craniosynostosis as soon as i got home and found a website called craniokids.org. This simple find is what got us through this incredibly difficult journey. Through the site I met a mom named Shelby. She was and continues to be one of the most supportive and AMAZING women I know. She walked me through her entire experience & answered any questions we had. She even lived near Seattle Children’s Hospital and volunteered to come & meet us while we were there.