Chapter One

Ben's head first caused us concern during my 32 week ultrasound. Ben's head measured very large at that time, so my OB, Dr. Larson, referred us to a specialist for a very high resolution ultrasound. We went to Dr. Stewart when I was 36 weeks pregnant. Everything looked good on the ultrasound, just a big baby with a big brain, according to him. When Ben was born his head measured off-the-charts large, so a CT scan and thorough chromosome screening were ordered. Everything came back completely normal. We thought we were in the clear with a very smart little baby!

At Ben's 1 month checkup Dr. Daley told us he was concerned about the shape of Ben's head- very thin and long. He said Ben's sutures might have closed up pre-maturely, but we would give it another month to see if it would get any rounder. I began to do a little bit of research on the topic at this time, which helped to prepare me for the diagnosis. At Ben's 2 month checkup Dr. Daley ordered an X-ray and called that night to confirm that indeed, Ben's Sagittal suture was closed.

Ben was diagnosed with Sagittal Synostosis on January 28, 2009. He will most likely need to undergo surgery on his skull to correct the condition. The prognosis for Ben's condition is very positive- most kids are completely normal after the surgery.

Here is Craniosynostosis in a nut shell:

The skull of an infant is made up of free-floating bones separated by fibers called sutures. This arrangement allows the infant's head to pass through the birth canal and also enables the skull to grow with the brain in early infancy. Premature fusing of the sutures is called Craniosynostosis, which restricts skull growth. The cause of this premature fusion is unknown.

There are two methods to the repair. The first is a traditional procedure in which an incision is made across the head from ear to ear. The neurosurgeon cuts the fused bone and then removes the parts of the skull that are deformed and remolds them before replacing them. The procedure is invasive, and the chance of a blood transfusion is relatively high. As the child grows older, the cosmetics are evaluated to determine if a second surgery is required. The chances of this are relatively low. The ideal time for this procedure is between 4-10 months old.

The second method is an endoscopic procedure. Two small incisions are made on top of the head. The procedure is less invasive, and the chance of a blood transfusion is significantly lower. The child is then required to wear a corrective helmet, for up to a year, to help shape the head. Should the helmet not achieve satisfactory results, a second surgery might be possible. The possibilities of multiple surgeries is greater in this method. This procedure is usually done prior to 3 months old.

J.P. and I are planning to meet with surgeons who perform both methods to decide what is best for Ben. We have a meeting scheduled with Dr. Fearon on February 26 in Dallas (hopefully sooner if they have a cancellation). Dr. Fearon is very well known in the world of Craniosynostosis. He performs the regular surgery, but has revolutionized the procedure. To read more about him and his philosophy go here. We are also hoping to meet with Dr. Genecov, who is an expert on the endoscopic procedure. I left a message with his office today about scheduling an appointment. I have read wonderful things about him and his procedure as well. Dr. Daley has also put us in contact with a pediatric neurosurgeon in Oklahoma City who treats Craniosynostosis. There are no doctors in Tulsa who perform these procedures.

We are trying to educate ourselves as much as possible on this condition. I have found it very helpful to read about other people's journeys with Craniosynostosis from diagnosis through post-operation on http://www.craniokids.org/ . It is a wonderful, supportive community where you can get questions answered by parents who have lived through this.

Right now we are just thanking God for blessing us with three wonderful boys who are all very healthy, even Ben. We are so lucky to have such wonderful, large families who we know will support us through this.

I plan to post updates here throughout our journey.