What the heck is Apert Syndrome?

Apert Syndrome:
Apert Syndrome is a genetic defect and falls under the broad classification of craniofacial/limb anomalies. It can be inherited from a parent who has Apert, or may be a fresh mutation. It occurs in approximately 1 per 160,000 to 200,000 live births. Apert syndrome is primarily characterized by specific malformations of the skull, midface, hands, and feet. The skull is prematurely fused and unable to grow normally; the midface (that area of the face from the middle of the eye socket to the upper jaw) appears retruded or sunken; and the fingers and toes are fused together in varying degrees. Apert syndrome is named for the French physician who first described it, E. Apert, in 1906.

Pretty scary stuff huh? That is what we thought when we googled it the first time...and to go along with this scary definition were terrifying pictures of worst case scenarios. Luckily we were able to find a site called Teeters Page, and that was and has been a life saver!

So pretty much Aperts is a syndrome that causes the bones in the skull to fuse too fast, and when that happens it causes the head to take on a weird appearance. It can be as mild as two bones fusing called the coronal sutures and that is all, or it can take on much more severe cases where all the sutures in the skull fuse prematurely.
The hands and feet also fuse to soon, and this causes the hands to take on many diffrent appearances. Some are mild and all five fingers are visably seen, or some are more severe, where the hands take on a rosebud effect and it can sometimes be very difficult to ensure the child to have five fingers on each hand, even with multiple surgeries. Aperts also affects the midface. Causing the eyes to be bulgy, and the midface to seem retruded. All of these characteristics are surgically corrected, but thinking about your child having this, and surgery, was and still is very overwhelming.