Facing Craniosynostosis: That Scary Day

I walked into Luke's 3 month well visit completely unassuming. My in-laws had mentioned that Luke's head looked a little big but I just laughed and said "the bigger the brain the smarter the kid!" I mean, I'd heard so many other Mom's say "My poor kid had such a big head. Thank goodness they finally grew into it!" Why should I worry about there being anything wrong with him?

Our pediatrician walked into the room and immediately said, "Well I noticed when you walked by me in the hall that Luke's head is abnormally large."

Cue the panic.

He re-measured Luke's head (the nurse had already taken a routine measurement) and confirmed that something wasn't right. He started showing me charts and percentages... I heard nothing.

I asked what all of this meant. He said he was afraid that Luke either had Craniosynostosis or Hydrocephalus and that he was sending us for a CT scan. I texted Josh "Docs worried about Luke's head. Something's wrong. We need a CT." Cue the panic for Josh.

I left there feeling numb. I hadn't asked many questions because I didn't know what to ask. I had a knot in my stomach and all I wanted to do was sit and hold my baby. I got online and started researching CT scans on infants and, of course, found articles about the dangers of radiation exposure and cancer. I called our pediatrician in a panic prepared to argue that dangers of the CT outweighed the dangers of his possible diagnosis. He assured me that they did not... and as I started to sob on the phone he calmly and lovingly began to explain that we had to find out what was going on for the well-being of our baby. And so we went.

Luke, thankfully, slept through the scan. They allowed me to have a dark and quiet room to feed and rock him before they took him in. I laid him down in a tiny cradle-like positioner and he didn't move. The scan was over in less than a minute. The radiologist called our pediatrician with the results in less than an hour. Sagittal Craniosynostosis. We were sent to a specialist in Winston Salem.

I wasn't told, and didn't think to ask, what type of specialist we were to be seeing. I assumed it would be a pediatric neurosurgeon but was surprised when I received a call confirming our appointment with a Cranio-facial Plastic Surgeon.

Dr. Thompson was amazing. He spent as much time with us as we needed and answered all of our questions. He explained that Luke was an excellent candidate for Spring-mediated surgery. (Check this link for a list of treatment options) He said it was the least invasive option, had a very short recovery time and didn't require helmet therapy (to help shape the head). Dr. Thompson has been doing this surgery for years with excellent results. His oldest patient to have had the surgery is now 16 years old and is perfectly normal. So we schedule the surgery for May 24, 2011. Luke would be 4 months old.


This is the diagram I found and added the green areas to help our family visualize what was going on in Luke's little head. The fused areas were only allowing Luke's head to grow front to back so his forehead protruded greatly.