and Little Matthew Rolls
Cranial Synostosis is a condition in which one or more of the skulls sutures fuse prematurely.
In Charlie's case, his sagittal suture closed prior to birth (see photo on the left). This causes his head to grow abnormally and must be corrected with surgery. This is complcated by the hydrocephalus. Most newborns with hydrocephalus have all sutures open so the cerebrospinal fluid will expand the skull. Charlie's skull can't expand, therefore, building too much pretture which will cause more damage to his already "injured" brain.
The sagittal suture is located on the top of the head extending from the soft spot to the back of the head. This is the most common type of cranial synostosis, occurring in three to five infants in every 1,000 live births. This is also most commonly found in males. Because the brain cannot grow or expand sideways, it is forced to grow forward and backward leading to the forehead protrusion, narrowing of the temples and an elongated head. This condition is known as scaphocephaly (SKAF-o-Sef-a-lee).
Charlie's First Surgery - Strip Cranial Removal
June 2004 - Charlie undergoes surgery for cranial synostosis. They removed the 1.5 inch x 3.5 inch section of skull that fused prematurely. His incision is from front to back in an "s" shape and healed rather quickly. He spent one night in the PICU and was released just a few days later after receiving a blood transfusion. Once the shunt was in place, it began draining the fluid and caused the sunken-in appearance at the suture opening (see picture below). Unfortunately, draining all that CSF fluid caused the same suture to refuse, meaning that Charlie will probably require the complete cranial reconstruction surgery we have dreaded all along.
Charlie's Second Surgery - Complete Cranial Reconstruction
January 2005 - The cranial remolding helmet didn't work, so Dr. Johnson performed a complete "cranial reconstruction" procedure on Charlie. This is a process requiring removal of his skull from the shunt up, reshaping his entire head. His skull has been anchored to his facial bones between the eyes with an absorbable suture. This suture should completely dissolve in the next 6 to 12 months. Due to the excessive blood loss, Charlie required a blood transfusion right after surgery. The blood Charlie received was his daddy's, and somehow, given the circumstances, I found that reassuring. Unlike the surgeries before, he didn't have to spend a night in the PICU and that was a huge relief. The incision is from ear to ear, in a zig-zag pattern (to avoid any hair growth issues). As we were told, he swelled significantly and couldn't get his eyes open. Once he was able to get his eyes open, he was released from the hospital on the 4th day after surgery. He didn't require any bandages because the draining was minimal and the swelling subsided a little bit everyday.
The Dreaded Cranial Helmet
September 2004 - Our last visit with Dr. Johnson gave us "somewhat" good news. Instead of going ahead with the complete reconstruction surgery, we're going to try another approach. Charlie will be wearing a cranial helmet from 3 to 6 months. He will need to wear it 24 hours a day, 7 days a week. Dr. Johnson has prepared us for the chance that the helmet will not work, but we all agree that we will exhaust every possibility before putting him through another operation.
