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Devin's Craniosynostosis Page

Craniosynosotosis is the premature closing of one or more of the sutures in the skull.

More specifically Devin was diagnosed with Sagittal Synostosis, which is the premature closing of the Sagittal Suture (the suture that runs front to back). Because it had fused prematurely his skull would not be able to grow properly. As the brain was developing his skull would only be able to grow where the sutures were open (the front and the back). Hence Devin's skull was growing in a boat shape - very long and narrow with a bossing forehead and back on the head.

Sagittal Synostosis is the most common form and occurs in approx. 1 out of every 2000 births. There is debate as to the cause and the effects that it may have (is there pressure on the brain???), no one really knows for sure but what they do know is that it can have profound psychological effects on the individual (looking abnormal, teasing etc).

And that's when we knew we had to do something, something to give Devin the best possible childhood and the best possible chance for a healthy and happy future. To us that meant proceeding with the surgery. Although we were given the choice, to us it hardly seemed like a choice, how could we opt not to have the surgery.

I hope as Devin grows up he realizes that everything we did and all the choices we made for him are because we love him so much. When deciding we asked ourselves - At 10, 15 or 20 years old would Devin be happy with the choices we made for him? and the only answer we could come to was YES

Devin went in for surgery in August. He was just 15 weeks old. He is now 3 years post-op and is doing great. He had to wear an orthotic helmet for approx. 5 months which helped mold his head as the brain grew and the sutures reformed.
We just count of blessings everyday that Devin will lead a normal, happy and healty, life.

For any parents and families that are going through something similiar I know it can be a scary time. Before this, I had never heard of this condition. I drew most of my knowledge and strength from information on the internet. So I have attached links to some on the websites that I found most useful.

Sagittal homepage



Sagittal Synostosis
These photos were taken the morning of the surgery.
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