Friday, July 29, 2011

An Unexpected Journey: Craniosynostosis

Two words I had never heard before, and really wish I never knew existed: craniosynostosis and scaphocephaly.

Cranio what?! How do I even pronounce those?! Not MY son...

That's what I was thinking when I saw those words scribbled across the referral from Deacon's pediatrician to see the pediatric neurosurgeon. I don't think it's accurate to say I was in denial, because to me there was nothing odd about D's head. Most babies have odd shaped heads. It's part of the deal from being smushed into a small, tight space for 40 weeks. As I drove home after D's 4 week check-up, I was confident the pediatrician was just being over cautious by asking me to take D to see a neurosurgeon. So confident in fact that I didn't even read the referral and those words - craniosynostosis and scaphocephaly - until later that evening when I took a break from cooking dinner. I decided I would do a quick Google search to see what those words meant. And that's when my heart dropped into my toes... as image results began popping up of baby boys with head's that looked exactly like D's head, I realized there really may be a problem. It hit me for the first time that this was serious. Very serious. And then I clicked on one of the websites... read the definitions of those words - craniosynostosis and scaphocephaly - and almost passed out. Literally. The blood rushed out of my brain and everything went black for a moment. Not my son...God, please, not my son.

Craniosynostosis (CRAY-NEO-SIN-O-STOE-SIS): Craniosynostosis is a congenital (present at birth) defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.

Scaphocephaly (SCAF-O-CEF-A-LEE): Scaphocephaly refers to the condition where the head is disproportionately long and narrow as a result of the premature fusion of the sagittal suture. The sagittal suture runs from front to back starting at the fontanel, at the top of the head, and extends backwards along the middle of the skull to the back of the head. Often the fontanel, or soft spot, is absent or closed. A ridge can be seen, or felt, running along the top of the head in between the right and left half of the skull. When viewed from above, the skull is wider near the forehead and gets narrower towards the back of the skull (which is the opposite of what is normal: that is, the back of the skull should be wider than the front). When looking straight on at the child's face, the forehead seems quite big, or prominent, and the sides of the skull look narrow. The incidence of scaphocephaly is one in 2,000 births. It is the most common form of craniosynostosis. Almost all children affected with scaphocephaly require surgical treatment.

Deacon's head isn't just shaped funny as all baby's head are for the first few weeks before it rounds out. Deacon's head is shaped funny because the sutures or "soft spots" on his skull fused together too early. Because of this, his head can't round out as it it supposed to. It can't grow side to side - only front to back. The bones that would usually stretch apart (and eventually grow and fuse together in the toddler years) are already "glued" together. The hard ridge I felt running down the back of his head where the soft spot should have been isn't normal either. That's where the bones fused. All of it makes sense now that I know what it is. So how exactly did this happen? There are two ways... one, is genetic. The other is due to fetal position inside the womb. Remember all that pain I felt because D was sitting so low in my pelvis? Well - that position in my womb kept his skull from growing as it should. Being wedged into my pelvis made his skull bones touch together too early, signaling that they needed to fuse since they weren't able to grow normally. No God, not my son. Please don't let this be true. This happens to other babies... other mothers. Mothers that when you hear their stories, your heart breaks for them. You pray for them. When you hear what they are going through, you thank God your babies are healthy because you doubt you have the strength to handle what those mothers handle on a daily basis.

Nearly two weeks have passed since all this came to light. It's taken me that long to be able to write about it. And, as far as we know at this point, it is true. Appointments with a Pediatric Neurosurgeon and Pediatric Craniofacial Surgeon have been scheduled. The consultations will determine just how many sutures have fused and what the next steps will be. The good news out of all this? The situation can be fixed. This isn't something life threatening, painful or that will affect Deacon long term. The bad news? It can only be fixed through surgery. Skull surgery. Between 2 and 3 months of age. Followed by Head Banding (aka Helmet Therapy) for 6 months to a year after. If it isn't treated now? That's when things get bad. The head can't grow properly, which means the brain can't expand. Facial deformities, extreme pressure on the brain... that's just the beginning. The scenario is enough to make you lose your mind with worry. Trust me on that one...

So for now we wait. We wait for our appointments. For the surgery. For the recovery. And we pray. We pray for the best surgeons to be on the case. For full recovery without complications. And to see God's hand at work. I'll write more about that aspect later... there is a lot to say about that topic : )

In the meantime, here are some videos that I found that help explain the situation.  One shows the condition and explains the procedure to fix it. And one is short documentary of a family that went through this. It's a stressful, emotional time for us - but I truly believe that there is a reason this is happening, and that we will come through on the other side of this in a better place. This is only the beginning of a journey we didn't expect, didn't plan for, didn't even know was in the realm of possibilities. But here we are. I'm looking forward to the finish line : )



  1. I am so sorry that you have to go through this. I used to nanny for triplets and one of them had this as well. (Three babies take up a lot of space in 1 tiny womb) I was there after the surgery during the helmet therapy. I just gotta tell you, he couldn't have cared less. He had his brothers, he had his mama and dada, and he had his nanny. He couldn't care less that he had to wear a helmet on his head. Deacon is going to be the same way. He's going to love the heck out of his mommy, daddy, and sister and hardly notice the helmet on his head. I hope this makes you feel a little bit better. :)

  2. I want you to know you're not alone! My son was diagnosed as metopic cranio a few weeks ago and we had the surgery last week and got his helmet Friday. Yes, it was scary as heck and a pretty emotional week for us, but already he's almost back to his old self...just with a new piece of equipment. If you haven't been to check out you should. There is a ton of support and information. Good luck with the appointments!

  3. praying for D and the fam. I know this is a stressful time. So I pray for God's peace to cover you like an old familiar blanket.