Monday, August 15, 2011

You Have to Do WHAT?! The Diagnosis

So we finally have the official diagnosis: Sagittal Cranisynostosis (aka Scaphocephaly). Basically, it's exactly what we thought it was. However, the treatment is somewhat different than originally expected... but more on that in a minute.

First, the good news! We ended up meeting with both the Pediatric Neurosurgeon and Craniofacial Surgeon last week, and I am happy to report that they are AMAZING doctors! Professional, experts in what they do, but very personable and were able to make us feel comfortable.They were also able to explain everything that was going on (and everything that WOULD go on) in plain English that you didn't need a medical degree to understand. Answered prayers on that one!

Now, the not so good news... The surgery is different than what I expected it to be. A lot more invasive. Ok - a TON more invasive than I expected. It ends up that the top and front portions of D's skull is fused - not the back portion as I had thought. So, the endoscopic, less invasive surgery isn't an option. So here's the scary part: they have to do a craniotomy. In English: they are removing his skull. To do this, they have to cut his head open from ear to ear. Then, they remove the top of the skull (completely), reshape it (outside his head), and then put it back and reattach it using screws and other hardware. I'll give you a second to let this sit in... because I know first hand that the visual is highly disturbing... Ok. So one good thing is that the screws are dissolveable (somehow) and so he won't have any metal in his head. YAY! (Can we say airport security nightmare?! Just kidding : ) ) Another good thing - after the surgery and recovery, he'll be 100% fine. No helmet!! Basically, the screws take the place of having to wear a helmet. And because the skull is manually reshaped by the surgeons, there is no need for the helmet (which is used for shaping purposes). Once he's healed up, he'll be like every other rough and tumble little boy, with no restrictions on his activity. Crazy, right?

Because the surgery is more invasive, the doctors want to wait until he is at least 4 months old to perform the surgery. Today I got the call that the surgery has been scheduled - last week in October. In the meantime, we wait patiently. But despite everything, I feel at peace. My anxiety has reduced from about a 1,053 to a 5 (on a 10 point scale). I believe I am witnessing a greater plan unfold right before my eyes. And that is a truly amazing thing : )


  1. wow, that is alot to digest. Especially going in expecting to hear one thing but hear another. Thank you for being so open and transparent with your journey. I personally have not experienced this with my children but I know for a fact, your story with touch those who have. I will pray for a save and quick healing for D, in Jesus name!

  2. God is good, all the time God is good. While reading I was holding DD close. I can't imagine your situation but I can keep praying for you and yours. Take care and stay strong.