Kallen’s Story

Site created on May 16, 2019

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Kallen was diagnosed with a condition called Metopic Craniosynostosis. Metopic craniosynostosis is a type of non-syndromic craniosynostosis that occurs when the metopic suture fuses before birth. Which basically means the two skull pieces that form  and fuse together into his forehead fused before they were supposed to, in his case causing a point at the front of his head. Several issues can develop if this is left untreated which include brain and head growth issues. As of right now he has no motor skills development issues and he is right on track with other children his age. With this, we have been recommended to Mayo to have surgery. 
There are two types of surgeries that are done for this diagnosis. The first is called Endoscopic surgery: Using a lighted tube and camera (endoscope) inserted through small scalp incisions, the surgeon opens the affected suture to enable your baby's brain to grow normally. Compared with an open procedure, endoscopic surgery has a smaller incision, typically involves only a one-night hospital stay and usually does not require a blood transfusion. However due to Kallens age the more likely surgery that he is looking at having is what they refer to as Open surgery: The surgeon makes an incision in the scalp and cranial bones, then reshapes the affected portion of the skull. The skull position is held in place with plates and screws that are absorbable. Open surgery typically involves a three- or four-day hospital stay, and blood transfusion is usually necessary. It's generally a one-time procedure, but in complex cases, multiple open surgeries are often required to correct the baby's head shape.

Newest Update

Journal entry by Casey Danielson

Today we had another appt with the helmet specialists. Kallen has been making progress with the reshaping of his skull! So much so that he is graduating into his second helmet!! We should be getting it next week. In less than a month we go back to mayo for a follow up. His incision is fully closed and no more scabs. We are very happy to say that we haven't really had any set backs developmentally for kallen since getting the helmet. We were worried he wouldn't want to try sitting up on his own and that he would be delayed with crawling. Thankfully we have kept right on track. Kallen can sit on his own, he isn't fully crawling but hes arms crawling and is attempting to crawl more and more each day. Hes a little babblebox too. Hes proficient in rolling he can basically get anywhere he wants to and quickly by rolling. Now we are working on sleeping through the night, we do feel that his helmet is hindering his ability to sleep fully through the night but we are working on different things to help. The red is where we started and the blue is today's results
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