Jackson was born on August 1st, 2012, one day before his due date after a healthy, normal pregnancy and delivery. Around one month my husband asked for my opinion on Jacksonâ€™s head shape. Why did it still look as though it was long and narrow from delivery? We couldnâ€™t remember when our daughterâ€™s head rounded out from delivery, so we shrugged it off and assumed if something were wrong, his pediatrician would take notice.
At his two month well-baby visit, our pediatrician asked if we were aware of the protrusion in the back of his narrow head. I could feel my heart drop as she pointed it out. I told her how we had noticed around the one month mark, but didnâ€™t think much of it. She explained that there was this condition called â€œcranioâ€¦â€, but by that point all I heard was that there was something wrong with my perfect, happy baby.
We immediately went for skull x-rays, and by that evening our pediatrician let us know Jackson did have this strange diagnosis I had never heard of: sagittal craniosynostosis. We were being referred to a neurosurgeon. A neurosurgeon? I never imagined any of my children would ever have to be sent to such a serious, scary department. It was three weeks before our scheduled appointment with a neurosurgeon. In the meantime, Jackson had a CT scan and we researched as much information as possible.
We also were blessed to find CAPPS Kids and organizations like it which offer so much support and guidance. We finally met with our neurosurgeon on October 25th. He explained his plan of action: Jackson was young enough to meet the requirements for the much less invasive endoscopic surgery. Surgery was scheduled for the following Friday. The waiting, and anxiety, began. My first thought seeing Jackson for the first time after surgery was not of how horrible it was to see my little baby all tangled in cords and IVs, or how much pain he must be in.
My first thought was how incredibly different and round his head was! I did not realize how abnormal it was before! Jackson needed a small amount of blood from a transfusion, but other than that surgery went off without a hitch! Life at home seemed to get back to normal so quickly- it was a week before Jackson was off of pain medications all together.
It took a few weeks to get him to start sleeping through the night again, but that was expected. We will continue to see his neurosurgeon once a year until he is six years old. There is always a chance that Jacksonâ€™s sagittal suture could fuse together too soon and he would need another surgery, or that it doesnâ€™t fuse perfectly when it does. But for right now, we are happy. Jackson is healthy, developing right on time, and has no memory of the surgery. The entire thing seems to be just a bump in the road that happened years ago (really, itâ€™s only been one month!). We are the proud parents of a cranio kid, and he is our little warrior!