Sadie

Hello, I am new to blogging, but thought it was important for me to talk with other parents going through the same thing I am! My daughter is 10 months old and she has PHACES Syndrome. She has a large hemangioma over her left eye extending onto her cheek (segmental hemangioma). The specific hemangioma she has is associated with the PHACES syndrome so we were referred to a specialist in NYC. She has gone through 2 laser treatments with Dr. Waner in NYC. She also has a surgery scheduled with him on August 19th. I live in the Albany area so I travel to NYC at least once a month to see vascular anomaly specialist Dr.Blei. The hemangioma first appeared to be a problem when she turned 3 months and couldn't open her eye. We were then referred to a pediatric surgeon who put Sadie on Prednisone. He did research and recommended I get a second opinion so he referred me to Dr.Blei. With Dr. Blei and her team of PHACES specialists we have found out a lot about Sadie's condition. She has flow in only one internal carotid artery ( main blood supply to the brain). That would be the A. She also has early stages of glaucoma (E). Obviously the H also. Despite everything she is a beautiful and smart child. There has been no developmental delay (developing above average). The one thing that bothered me before her laser treatments were the nasty and rude comments from strangers. "What happened to her face?" "Did she fall?" "Aw poor baby" one lady even said, "What does the other guy look like? Did you get into a fight?" I never understood why someone could be so rude and inconsiderate and ask such questions about a beautiful baby. It took such a toll on me. I would simply ignore them and walk away finding the need not to explain my daughters condition to them seeing as it is none of their business. I want to thank who ever created this blog! I have no one to talk to because PHACES is so rare. My email address is serenamonroe@hotmail.com if anyone wants to exchange stories or talk about our little angels.