So What IS Craniosynostosis Anyways?

Let's get medical here for a moment. 

Mayo Clinic defines Craniosynostosis (kray-nee-o-sin-os-TOE-sis) or "cranio" as it's referred to by those touched by it, as a birth defect in which one or more of the joints between the bones of your baby's skull close prematurely, before your baby's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen.

Craniosynostosis can affect one or more of the joints in your baby's skull. In some cases, craniosynostosis is associated with an underlying brain abnormality that prevents the brain from growing properly. Approximately 1 in every 2000 babies is born with some form of Craniosynostosis. 

More specifically, Grant has Sagittal Craniosynostosis, also called Scaphocephaly. The literal meaning of the Greek derived word ‘scaphocephaly’ is boathead. Premature sagittal suture closure restricts growth in a perpendicular plane, thus his head will not grow sideways and remain narrow.  Compensatory growth occurs forward at the coronal suture and backward at the lambdoid suture giving respectively a prominent forehead, called frontal bossing, and a prominent back portion of the head, called coning. When viewed from sideways the resulting shape of the head looks a bit like a boat.

You can see the frontal bossing (which just recently made an appearance) when you look at Grant's profile. Dr. Tomita told us that even though he looks cute (and I tend to agree wholeheartedly!) it's obviously a concern. 

If you look at the diagram it shows the sutures that should still remain open for quite some time. It was REALLY amazing to look at this on the images from his 3D CT Scan. It's not Grant's soft spot that closed, rather the sagittal suture that fused at some point in utero. 

I get a chuckle every time I hear the word craniosynostosis come out of my 5 year old daughter's mouth flawlessly. We've all received quite an education over the course of the last week.