Thursday, January 8, 2015

The backstory

When Arron was born, we noticed that his left ear was folded over on itself.  The docs weren't too concerned about it and said it appeared to be related to his position in the womb and not that it had formed incorrectly.  But over time we noticed that he had a VERY strong preference for ALWAYS looking to the left, and usually up at an angle like this:

 It didn't seem like a huge deal, so we just kept trying to reposition his head to have him looking straight ahead.  (We had very little success.) We also noticed that he was developing a pretty nasty flat spot on the back of his head because he was always laying on the same part of it.  So at his 2-month well baby check, I brought it up to our pediatrician.  He diagnosed Arron with torticollis, which is a tight or short muscle in the neck that causes this extreme preference for always looking to one side.  He thought that the flat spot would correct itself over time, and was nothing more than positional plagiocephally. Plagio is not a big deal of generally corrects itself once babies start sitting up and quit putting pressure on that same spot on the back of their head.  He did recommend though that we go get Arron evaluated at Seattle Children's Craniofacial Clinic just to make sure that nothing more serious was going on.  I agreed that it was better to be safe than sorry.

So on December 8, we met with Dr. Wenger at Children's.  She's an awesome Craniofacial Pediatrician as well as a genetic counselor.  After talking with us for a few minutes and evaluating Arron, she said she wanted to get a CT of his head, to make sure it was just plagio and not craniosynostosis.  Cranio is when one (or more) of the sutures in the head fuse prematurely.  It's important because those sutures are what allow the skull to grow and accommodate Arron's rapidly growing brain.  When they fuse too soon, it causes pressure in the brain which can lead to blindness, seizures, developmental delays and eventually death.  So she went and worked some magic with radiology, and off we went!  He did awesome during his CT.
Unfortunately, his scan revealed that he had craniosynostosis in the lambdoid suture, the most rare suture to have fused.  Cranio as a whole only impacts 1:2000 babies, but lambdoid is only about 5-10% of all cases.  Go big or go home I guess!
So after one VERY long day and a few naps for Arron up at Children's we knew what we were up against and that we would be getting a call in the near future to set up a surgical consult with our plastic surgeon and neurosurgeon.  We knew that there were two options for surgery, but one involved removing a large portion of the back of his skull, reshaping it, and then putting it back in with plates and screws that would dissolve in about a year.  It would be roughly a week in the hospital, but then it would be done and over with.  The other option is a far less invasive surgery, that generally only requires 2 nights in the hospital, but then requires helmeting therapy afterwards to correct the shape of his head.  But more about the decision making in my next post.  For now I have to go feed the lil guy and get ready for work.

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