Charlie – Metopic


On December 6th, 2010, at 12:42 pm,  our sweet little boy was born.  Just days before, we found out that Charlie was frank breech, so for the safety of him and myself, we had a cesarean section birth. Charlie was born as healthy as can be at 7 lbs, 11oz.   My husband , Tommy, and I were so happy to finally meet our boy!! Right away we both knew and could see something was not quite “right” with the shape of his forehead. It looked kind of pointed and his brow bone seemed to stick out. As I was lying on the operating  table, in my new mommy bliss, I heard one of the surgeons say to the other “have you seen this before?”. They were referring to his forehead shape!  We were assured that the shape was from the breech positioning, and it would correct itself in a few days. I was not convinced. I remember telling my sister my thoughts, and immediately bringing it up to our pediatrician when she visited that same day. She suggested that we wait one month, and if nothing changed, we would address it then.

Over the next month, I spent time researching “babies head shape” on the internet. I immediately came across a word that would change our life. Craniosynostosis.  I took one look at the pictures of other children who had this, and I knew this is what my perfect little boy had! He looked just like these kids!  At just over one month old, our pediatrician referred us to the craniofacial team at Seattle Children’s hospital.  At our first appointment, the cranio pediatrician took one look at Charlie and said what I already knew. Charlie has Metopic Craniosynostosis with trigocephaly, and will need major surgery to reconstruct his skull and brow bone. He needed this surgery so there would not be any pressure put on his brain. Although my husband and I were devastated, we knew it was the right thing to do.
The next few months, I learned everything I could about cranio. I met Shelby from Cranio Care Bears, who began mentoring me through out the next months. Shelby introduced me to other cranio moms, and I found my support team! These amazing moms answered every question I had.
My husband and I had the same fear about surgery that I am sure most families have.  Will he have the same personality?  How different will he look? Will he develop normally? Although it wasn’t said out loud, we even thought, “will he make it through surgery?” With these thoughts weighing heavily on our minds, we waited for eight long months for Charlie’s surgery to arrive.
Finally , on Tuesday, September 6th, 2011,  the day arrived. My husband and I sat numb, holding our sweet boy, knowing this would be the hardest day of our lives. At 9:23 am, a lovely nurse with a kind smile, took Charlie from my arms and walked through the door, and down a hallway to the operating room. We were soon met by my sister, brother in law and nephew, who came to wait out this horrific day. Shortly after, we were met by our Cranio Care Bear angel, Shelby.  She came bearing the Cranio Care Bear care package, containing everything we may need for our hospital stay. Shelby stayed by our side the entire day! At 4:00 pm that afternoon, we got the news that the surgery was over.  We met with the surgeons who told us the surgery was a success!!! They informed us that the brain was very “tight” against the skull, reaffirming the surgery as necessary.  By 5:00 pm, we were able to see our sweet boy!!!  As my husband and I were led into the pediatric intensive care unit, I breathed a sigh of relief as I saw Charlie laying there. He looked amazing! Nice round forehead, different, but still my sweet boy!  Within minutes, Shelby was there hanging up the prayer chain on Charlie’s crib. I read that prayer chain every day we were in the hospital, each time I could feel the love and support.   Charlie did well in the hospital.  I was able to hold him that night. I will never forget how happy holding him made me.  By Friday night, we were able to go home!
Charlie was back to his sweet old self within days of the surgery. I was afraid that I would miss his old face, but his personality shines through so strong, I honestly can’t even remember what he looked like before unless I am looking at a picture!  Charlie is almost 11 months old now, 8 weeks post-op. He has learned to walk, and keeps us smiling every day!!  Although our cranio journey is not over, a huge chapter is closed.