Many thanks to my friend Olivia for directing me to this forum. My name is Nora and I have a 28 month old son with suspected metopic craniosyntosis. Our son joined our family through adoption; we took custody of him two weeks ago and noticed immediately that he had both an abnormal head shape and a vision impairment.
We specifically sought to adopt a "waiting child" (one who needed extra medical support) and had pursued this child for that reason--but his documented medical needs never included craniosyntosis! We prepared ourselves (and a long list of resources) for *other* medical issues that he may have and now find ourselves starting anew with this potential diagnosis.
I spent much of the afternoon on the phone trying to get an appointment with the craniofacial team here in Austin. We were supposed to have gotten a referral from the International Adoption Clinic, but it sounds like that never went through.
I have the feeling we're facing a lot of medical bureaucracy; any tips on navigating the system, staying organized and being a strong advocate for your child are most welcome.