Colin - Sagittal Synostosis

In 2004 at the age of 6 months, Colin underwent surgery to correct a condition known as Sagittal Synostosis. We made this information page and accompanying photo pages to document want we went through and also as a source of information and hopefully reassurance for other families facing this condition. Please feel free to us the Contact Us form if you have any feedback or questions.
Beginning with Colin's 4 month checkup, his doctor expressed some concern at the rate of increase of head circumference. There was an 1 1/4" increase from his 2 month measurement. Colin at that time was in the 50th percentile of averages for body size, but in the 95th percentile for head diameter. At the time we felt that perhaps it was not a big deal, since Eden also had similar ratios and the kids seemed to be inheriting their dad's genetics as far as head size (no smirks or comments from the peanut gallery please).

When we visited family at the beginning of August, some relatives with medical backgrounds expressed concern at the apparent lack of a soft spot. At that point Sharon began researching on the Internet and found evidence that Colin may have developed a condition in which the bones in the skull fuse together prematurely.

On Wednesday, September 1, we visited a pediatric neurosurgeon, Dr. Mark Krieger, (only 100 of them in the country!) at Children's Hospital of Los Angeles. Colin was diagnosed with Sagittal Synostosis. The doctor was convinced enough not to require X-rays or scans. He confimed what Sharon had suspected.

Sagittal synostosis (also known as scaphocephaly, dolicocephaly, sagittal craniostenosis, or sagittal craniosynostosis), is a condition in infants where the sagittal suture (the ‘soft spot’ or fontanelle on top of the head between the left and right sides of the skull) closes early and inhibits growth of the head in the side to side direction. This forces the head to grow in a front to back direction, leading to a narrow elongated head. This information and more can be found at a website by a family that went through this procedure for both their children.

The doctor estimates that sagittal synostosis appears in 1 in 1,500 live births, and that no studies have indicated that the condition is genetic or hereditary. We could have 30 more babies and their chance of having the condition would be the same as any baby in the general population.

Colin will undergo surgery (calvarial vault, also called craniotomy or craniectomy) at Los Angeles Children's Hospital on September 23. The procedure involves removing a strip of bone from the top of his skull, and some from the back of his skull, in effect creating space for the bone to grow in properly. There will be an incision from ear to ear over the top of his head (about where a headphone would rest) that should be covered by hair over time. The doctor uses a zig-zag incision which has proven more effective at good hair regrowth patterns. Colin will NOT have to wear a helmet and should need about a 4 day hospital stay. The surgery on September 23 will begin at 8:30 and last about 1 1/2 hours. The doctor says, and I quote.. "The surgery will be harder on you (the parents) than it will be on Colin" :-)

UPDATE: The surgery was delayed a bit (another patient ahead of him), and although the procedure itself took about 2 hours, it was about 3 1/2 hours from the time he was taken to the surgery room to when the surgeon was discussing the procedure with us.

There is a 90% chance Colin will need a blood transfusion (common in infant surgeries). We will have a chance to donate blood ahead of time and have it directed to him.

UPDATE: One of our directed units was used during surgery, and another used a day after surgery.

Other than that the prognosis is good! The people we know in the medical field tell us this is routine surgery and that Colin will be fine. This surgery is performed often (about 30 times a year) at the hospital and over 100 times by this surgeon with a very good success rate. Since Colin is still young and skull is still developing, it should attain a more rounded shape on its own. 

Other than a non-rounded skull, Colin is perfect developmentally and neurologically. He is rolling over, smiles at anyone and everyone, can "tripod", that is, sit up if he uses his arms for support, and has learned he has vocal chords. He is going through adjustments as Sharon has gone back to work this week... he has been refusing to eat from a bottle, so he's pretty hungry when Sharon picks him up after school. I'm sure he won't starve and will figure out that the bottle is better than nothing.