Nathaniel was born by emergency c-section in February 2015. Even though the doctors instantly recognized that he had a large head; (it was even mentioned during my 20 week scan) no one picked up on his sagittal synostosis until his 4 month check-up. After the initial shock and panic, I found CAPPSkids.org and other websites and soon found the information and support we needed.
We live quite a distance from any neurosurgeon so when it came to choosing the right team, we decided on Dr. Proctor at Boston Children’s hospital as we had family nearby. Nathaniel underwent endoscopic surgery to release the sagittal suture 2 days before he turned 5 months. He amazed me by bouncing back to his normal, smiley self in no time. We’re in the early stages of his post-op helmet, but we’re all learning to adapt to it a little more each day.
I’m getting used to the quizzical looks and odd questions from strangers; I simply see it as an opportunity to raise awareness of the condition. We love our beautiful boy and always knew he was one in a million (and one in 2000!)