Sagittal Synostosis

Gavin has always had a uniquely shaped head - long and narrow with a bulge in the back. We weren't overly worried at first because we were preoccupied with the bruise and hematoma (giant soft spot) from his birth. At his 2 week appointment, I asked the pediatrician about it, and he told me to give it a little time to even out. He said cone heads take a few weeks to dissipate.

At his 2 month appointment (August 22nd), the pediatrician noticed that Gavin only turned his head to one side while lying on his back. I told him that the shape of his head made it impossible for him to turn his head from side to side - he couldn't get up over the hump. Because of that, he had a favorite side to lay on, and even held his head at a slight angle when sitting up or on his tummy.  Also, the cephalohematoma had calcified into a large bump. The pediatrician said he would refer us to a neurosurgeon to take a look at his head and a physical therapist to help with his neck muscles.

We went to Utah for a week after that for Gavin's blessing, and the pediatrician called and said the neurosurgeon wanted X-rays of Gavin's head before scheduling an appointment. We had his X-rays taken on September 10th,  and the neurosurgeon's nurse called me the next day. She told me the radiologist found no sign of craniosynostosis (early fusing of the cranial sutures), but did remark that his head shape was a little long. She said the most likely course of action would be a remodeling helmet once he was 6 months old and suggested lots of tummy time to strengthen his neck muscles and keep pressure off his head in the meantime. The ever-pushy mom, I asked to come in and see someone in person because I wanted more than an over-the-phone appointment.

On September 15th, we had our first physical therapy appointment. Our therapist was so sweet and showed us stretches to do several times every day for torticollis (tight neck muscles). She commented on how oddly shaped his head was and asked about his history. I relayed the neurosurgeon's message but told her I was going in for a consult the next week.

On September 23rd, we met with the neurosurgeon. He put his hands on Gavin's head and said, "It's definitely Sagittal Synostosis."

What is Craniosynostosis?

At birth the skull is made up of multiple bones held together by seams called sutures. The sutures should remain open as long as the brain continues to grow, enabling the skull to expand and properly accommodate the brain.s growth. Craniosynostosis is a congenital anomaly caused by early closure of one or more of these sutures, resulting in limited or distorted head grown. Craniosynostosis is also called synostosis or cranial stenosis. In rare cases, in addition to abnormal head shape, craniosynostosis may result in raised pressure inside the skull. Eighty to ninety percent of craniosynostosis cases involve a single suture, however craniosynostosis associated with a genetic syndrome may involve multiple sutures. Not all cases of multiple suture synostosis are associated with a genetic syndrome.

Sagittal synostosis

This is the most common type of craniosynostosis. The sagittal suture is located between the anterior fontanelle and the posterior fontanelle. Early closure of this suture results in scaphocephaly, which literally means .boat shaped head.. Infants will often have a protruding forehead, an elongated head, and a bony protuberance at the back of the skull.

The surgeon explained this and launched into discussing surgery and treatment, but he stopped when he saw my face . He went back over the X-rays with me and showed me where the radiologist had missed the fused suture because of his calcified hematoma; it obscured the view. The then spent an hour with me drawing on a little baby skull to show me the procedure and talk with me about the surgery. He likes to do the procedure when the kids are 4 1/2 to 6 months old, but had another surgery scheduled  for October 9th already with a fantastic pediatric craniofacial plastic surgeon and invited us to be his second surgery that day.

The craniofacial plastic surgeon wasn't satisfied with the inconclusive X-rays, so they sent us in for a CT scan the next day, September 24th. The neurosurgeon called the same day and said that the CT scan clearly showed the fusion of the Sagittal suture and that surgery was necessary.

Yesterday, October 9th, we came in and had Gavin's pre-op appointment. He received a clean bill of health, and only had a minor meltdown when they did his blood draws.

Today,  we are here at the hospital, and my sweet baby boy is having a Cranial Vault Reshaping procedure. I am still a little numb, and everything has happened so quickly that I am just trying to stay positive and not get inside my own head. We appreciate all the love and prayers and will post updates here for those who wish to follow.