As I mentioned before, our pediatrician was concerned about Sammy’s head shape at his 2 and 4-month appointments. Our first son, Finn, needed surgery to fix his skull bones that had fused too early (called craniosyntosis). The condition isn’t supposed to be genetic and yet, we might have 2 out of 3 boys with the condition. (Oddly enough, our local news just did a story about our surgeon and a family that had 3 out of 3 kids that needed the surgery.)
Anywho…we met with the team on Tuesday. It went okay. Not great. Not bad. Just okay. We met first with the primary surgeon (Dr. Miller) and he agreed with our pediatrician: it looks iffy. It isn’t a clear decision: the bones aren’t obviously fused, but the head shape isn’t quite right. We learned that his forehead is fused, but that alone isn’t enough to need surgery. That won’t be overly cosmetically weird nor will it obstruct brain growth.
But the bones that run from the front of the head to the back (like the ‘spine’ of a football if you will) are the ones that they’re concerned with. Enough so that they wanted to get a CT scan.
One of the beautys of this practice is that it’s connected to the hospital, so off to radiology, we went! Bad news: Sammy didn’t stay sleeping so his head moved too much to get a clean scan. We’d have to schedule it for another time.
Back to the clinic we went to meet with their geneticist. Who turned out to be a former sorority sister of mine from college! She’d like to enroll our family in a study being done in California. It doesn’t take much from us to do this. It isn’t like we’d need to fly out there or take medicines. They just want a blood sample from each of us, so that they can map genes. If Sammy needs the surgery, they’ll send a medical sample of his skull to see if anything can be learned from it. Should he need surgery, this seems like a reasonable thing to do.
Next we talked with 2 brain surgeons and a medical resident. They agreed with Dr. Miller’s assessment: looks iffy; need to see a CT Scan.
We have a CT Scan scheduled for Monday – hoping that answers starting coming after that.