Has anyone ever heard of this syndrome? It gets it's name because ususally the back half of the Sagital suture and the two lambdoid sutures are the ones that are fused (fully or partially). Our Isaac had the back half of the sagital and both of the top 1/3 of the lambdoid sutures fused. Isaac went to see a geneticist and they did not want to test him for any syndrome because he had no other signs or features consistent with a syndrome with the exception of the fused sutures. However, he did some research and came up with this syndrome. It afflicts babies of Hispanic/ Spanish decent more than other ethnic groups. The geneticist did say Isaac doesn't have any of the other issues associated with this syndrome, but since he is half Hispanic and half Anglo and had 3 sutures fused it was worth looking into because they can perform genetic tests to confirm. Since the folks on this site are so informed about anything to do with Craniosynostosis I thought I would ask.
On a different note, Isaac turned 1 on 1/8/10 and started walking 2-3 weeks later. Developmentally the Dr's say everything is great, but when more information comes to our attention it worries us all over again. It felt like we were past it, but I guess it never really goes away. I still feel very blessed and lucky and don't mean to complain because I know others' have had it worse than us. I pray for all those babies!!!