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Craniosynostosis

Posted Apr 09 2008 12:00am

Elisabeth had another head CT at Sacred Heart Medical Center yesterday followed by an appointment with her neurosurgeon. Unfortunately things were still looking the same. Elisabeth has craniosynostosis. I've talked about this condition in some previous posts, but for those of you that aren't familiar with it, here is the wikipedia definition:

Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures) before brain growth is complete. Closure of a single suture is most common. The abnormally shaped skull that results is due to the brain not being able to grow in its natural shape because of the closure. Instead it compensates with growth in areas of the skull where the cranial sutures have not yet closed. The condition can be gene-linked, or caused by metabolic diseases, such as rickets or an overactive thyroid. Some cases are associated with other disorders such as microcephaly (abnormally small head) and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain). The first sign of craniosynostosis is an abnormally shaped skull. Other features can include signs of increased intracranial pressure, developmental delays, or mental retardation, which are caused by constriction of the growing brain. Seizures and blindness may also occur.




They were able to do a 3D reconstruction of Elisabeth's skull after the CT. It was amazing to look at. It literally looked like a color photograph of her skull. And they could view it from every angle. On Elisabeth's skull, the anterior fontanelle (soft spot) is completely closed, as is the sagittal suture. The sutures on the side and the back are still open.

They will repeat the CT in several months to follow up on today's scan and to see if any of the other sutures have started to close. We will then go to Seattle Children's Hospital where they have an entire craniofacial center. We'll meet with Dr. Joseph Gruss who is a craniofacial plastic surgeon about the different options for dealing with Elisabeth's problem. Most likely it will be corrected with surgery.

Elisabeth's head may become more misshapen over the next few months. With the skull unable to expand upward, we expect it to push out toward the back. Her head is already somewhat elongated, but it could become more extreme. The brain will grow towards the path of least resistance, and for Elisabeth, that's the back. We'll see what happens.

For me it was an exhausting day but it had its perks. Or maybe just one perk. Four hours of driving to listen to some of my favorite music; a Brahms violin concerto, Mozart's Requiem, and Bruch's Violin Concerto to name a few. My girls sat in the back happily watching Alvin and the Chipmunks (a few times over).

***Sorry to those of you who have heard a lot of this information before. It helps for me to come home and type out everything that we talked about at the appointment before I forget it.***

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