Amanda. I have a 10 month old son who has been diagnosed with right coronal craniosynostosis. He also has asymmetric mandible hypoplasia, which basically means his mandible is small and he may need surgery when he gets older. The doctors named off a couple random syndromes and defects he could possibly have, but we are still waiting on a consultation with genetics.
He has his first appointment with a pediatric neurosurgeon (Dr. Ahn at Johns Hopkins) on January 6th.
I thought I would be prepared for this, but I'm scared.