Hi Lo, I'm from Argentine but living in London now. My daughter Sofia (she is 4 now) has an hemangioma in her left eyelid as well. I didn't want to have an op. when it appeared because I lived in my country at that time, with not many options to choose, and I didn't trust the doctor that we saw.
So, we started oral steroids without results, and when she was approx. 6 months old we went for intralesional steroids twice and they worked very well but not enough to reduce it completely.
Now Sofia is 4 and looks very well, mostly because she is growing a lot and the hemangioma always keep the same size (it is not seem to me that it is reducing its size). We have to take her to the ophtalmologist from GOSH, Dr. Nischall, every 4/6 months. He is very good. He told us that if we want we can have an operation now, and take it of with his surgery specialists. He told us that in Sofia's case it is not neccesary but we have to see what happen at school, you know, with the other children when they see Sofia. She uses a patch in her eye to prevent having more astigmatism, 30 minutes per day.
So here we are, having to make a decision about my daughter's hemangioma, and to be honest, I don't know what to do. She seems very happy and a lot of people didn't notice that she has an hemangioma but I wonder if she is going to ask me why I didn't take her to the operation when she grows up and watch herself in the mirror... at 12 or 15 years old...
I wish I could go to NY, to see Dr Fay and Dr Warner but it is not possible for me now. If somebody knows when Dr.Warner is coming to Berlin, could you please tell me?
Here is the website where you can see Sofia's pictures. http://picasaweb.google.co.uk/ValeriaDsofi
thank you and good luck. (sorry for my poor english)