Craniosynostosis is a condition where the early (premature) fusion of the sutures of the bones in the skull occurs. This premature fusing of the sutures restricts and distorts the growth of the skull. The resulting cranial growth restrictions can lead to increased cranial pressure growth which can lead to vision problems and impede intellectual development. Also the abnormal head shape is associated with low self-esteem and possible behavioral problems. It is possible to correct these deformities in some cases which can relieve cranial pressure and in the long-run, improve the self-esteem of the child. (www.craniochat.org)
Trigonocephaly (Metopic synostosis):
 | Trigonocephaly involves fusion of the metopic suture. The metopic suture runs from the top of the head, at the fontanel or soft spot, down the center of the forehead to the nose. It is different from the other sutures of the skull because it is the only one that normally begins closing in infancy. A ridge can easily be seen running down the center of the forehead and the fontanel is usually absent, or closed. In looking straight on at your child, in addition to seeing a ridge running down the center of the forehead, the forehead will look narrow, and the child's eyes are usually spaced closer together than is normal. When viewed from above the forehead has a triangular shape, like the bow of a boat. The incidence of trigonocephaly is somewhere between one in 2,500 to one in 3,500 births. The reason for this range is that it is sometimes difficult to determine if a child has trigonocephaly or not. (www.thecraniofacialcenter.org) |
So these are the words that were given to us to explain why Joey's head looked the way it did. Such big words for such a little baby! Now, we were left with a decision to make. Leave his head alone, and let nature take it's course. Or, have surgery to correct it. The pediatric neurosurgeon was on the fence with Joey's case, calling it mild/moderate. He said that if it was his kid, he didn't know if he would do the surgery.
Great! That doesn't really help us at all! It's OUR kid!
The surgery was presented to us as a 6-8 hour surgery, where Joey's head would be cut from ear to ear, his forehead would be removed (and possibly his brow bone too), it would be cut apart and reshaped with the pieces. What skull was left over would be discarded and the holes would be patched with metal and dissolving plates and screws. So, to elect "cosmetic surgery" to fix the pointy forehead would leave Joey with a scar on top of his head from ear to ear, and plates in his head. We were also told that the screws may always stick out a little bit, so you would feel little nobs on the head, but may or may not see them.
So, wait a minute... I'm going to fix one problem and give him two more? We were also advised that he would be restricted from contact sports. Just being a boy is a contact sport!
Joe and I looked at each other and said, there's got to be a better way.
A few pictures of the point...
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