Saturday, July 2, 2011

The "other side" of craniosynostosis surgery looks like this:

I belong to a support group of parents whose children have craniosynostosis.  Most of the parents post with glee, "We are on the other side!" after their child has survived surgery to fix cranio.  I understand the joy and relief of knowing that your child has made it through a major surgery, but I guess I wasn't fully prepared for what "the other side" truly means.  To me the other side meant Oliver would be free from his birth defect, have a normal, round head, and I would only have to think about craniosynostosis once a year at his check ups.  I have realized over the past four months that cranio is treatable, but not curable.  Oliver's skull is like the Earth's crust: constantly changing.  Ridges develop and then blend in while small bumps appear and recede.  One day his skull will look round and another day I will be worried about elongation.  I constantly analyze his head.  I keep thinking about the day my doctor finally mentioned Oliver could have craniosynostosis last November.  Oliver, Pearl and I walked to the park, and I called Glenn and my mom crying.  I watched Oliver playing with other children and noticed for the first time how unusual he looked.  In one way I think I was lucky.  For four years I looked at Oliver and saw nothing but perfection.  Had he been diagnosed at birth, I may have never known how that feels.
What does one do while she is waiting around to see if her son needs another major surgery?  Get involved!  Craniosynostosis has become my new favorite past time, a hobby even.  Ask me anything about cranio:  types of cranio, surgical techniques, risks or outcomes.  I think I could answer more than your average pediatrician at this point.  And instead of becoming victims of this birth defect, we are making every effort to make Oliver feel like he is a cranio warrior.  We are heading to San Diego in October to walk with Oliver and Shamu in support of kids with craniosynostosis.  Oliver keeps saying, "Aren't we so lucky that I have craniosynostosis because now we get to go to SeaWorld and I get to hold a sign?!"

It hasn't all been sunshine and roses with Oliver accepting his head.  His incision got infected and we had to shave his head.  People are now able to see his bumps and ridges and scar more easily and ask questions (which I welcome).  Oliver, on the other hand, is sick of talking about his surgery.  He doesn't even want to throw lightning bolts from his scar anymore.  He wanted to know why we didn't ask Dr. Fearon to make his incision wavy so he could spray water at people instead.  I made up a story about choppy water and we are cool again.   
Because Oliver is small and has an different head shape, we worry about bullying when he gets older.  Glenn and I were both small kids and dealt with occasional bullying.  Oliver has been interested in martial arts so we signed him up for a Brazilian Jiu Jitsu class.  The great thing about BJJ is that size does not matter.  A smaller opponent can take down a larger based on skill alone.  Oliver loved his first class!  
We found out that Oliver can fall gracefully:
And he knows how to avoid a pile-up.  Oliver is the joyful child in white near the end of the line.
So, that's where we stand with craniosynostosis.  I'll be back to post about farm life again soon!  Meanwhile, Oliver will probably be hiding under his favorite hat, and Pearl with either be eating or sleeping or doing both at the same time.  


  1. That's wonderful that he's taking a self-defense class...I think every child should do that. It teaches them self discipline, grace, coordination and self-confidence. Come to think of it, it would probably help me too LOL

    Thanks for this very informative post. I had no idea that his condition was an ongoing thing. I actually thought he's all done with that. I learned something new today.

    Have a wonderful Independence Day.

    Love to you and the family,
    Doris and Gizzy :-)

  2. Awww Jess...I'm crying happy tears here for Oliver and your beautiful family. I too did not know craniosynostosis was an ongoing thing, but it stands to reason doesn't it? Whatever, Oliver seems to be taing it in stride and it always amazes me how resilient children are. We can all take life lessons from them. It is good you arm yourself with knowledge!
    As for sweet little Pearl, I just want to scoop her out of her highchair, wash that little face and hands and sit down to rock her, lol. Too precious!
    Hope your summer is going well, and you remain in my thoughts and prayers....
    Big Hugs and Lots 'O Love!

  3. Forgot to mention Oliver looks handsome in his regalia! :) What a Warrior!

  4. I wonder how does Oliver's scare look at this time, under his hair, is itstill very visiable...My son has to have this surgery in a few weeks and i am so scared please email me at

  5. my four years old daugther also have cranio-sagittal (so the doctor told me). He never sad, that her head shape isnt normal, and now, whem she is four, he came up whit that!! I am so angry, a dont no what to do. I`m considering about the surgery. Is it possible to do a surgery at her age? please, if you can, contact me