I so feel your pain. My son Quinn is 3 now and had a very destructive hemangioma which also ate away his upper lip. To make a very long and frustrating story short he has just had two surgeries in New York with Dr Waner.
The derm team at HSC is amazing and supportive but the plastic surgery department is a whole other story which I will tell off of the board out of respect of all the amazing people at HSC who cared for my son who has PHACE Syndrome.
We were told 3 times he would have surgery until one day they (plastics)told us it was not an option devastating our family
Quinn has had lip reconstruction, Fraxel laser and liposuction of the cheek as well as removal of an orbital hemangioma.
These things are covered by OHIP BUT at this point they do not do surgeries of this kind until age 9 or 10. They are not correct in saying there will be a better cosmetic outcome if you "leave it alone" my son is proof of that. In some minor cases it is certainly true but this is a very very big issue up here one that I have been advocating for and fighting for 3 years.
Cosmetic outcomes depend on who is doing the surgery and that is the key. They wait until 9 years of age because they do not want to take the risks but they also have made no attempt to learn new techniques. They still have the old school way of thinking which truly is sad in a world class hospital like that. I love and adore that place and donate every month but something needs to change with the way they handle the plastic surgery aspect of hemangiomas. Our children have every right to treatment.
Mom to Quinn http://www.themightyquinn.ca
(his website and blog lots of pics)
Age 3 Diffuse Segmental Hemangioma
Multiple Serious Ulcerations,Scarring
There is a contact link on his website if any of you want to get in touch there is a lot more but I don't want to make it public