my daughter was diagnosed with PHACES after an MRI, bronchioscope, EKG, and another test of her heart (can't think of the name right now. lol). She was diagnosed b/c the tests found a tiny hole in her heart, as well as an airway H. She also has hemangiomas on the side of her head, chin, lip, and ears. The dr. said there isn't a concern involved, but she also has a line extending upwards from her belly button that he believes is the (S) part of Phaces. Her scenario is one of the best cases, as they believe the hole in her heart will close on its own over time. She is also doing well on Propranolol and we hope to be able to wean at 1 year. Best wishes to you and your son!
~Momma to Logan, 3 and Livy, 1~