Vascular Birthmarks Foundation Forum - View Single Post - deciding what action to take
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Old 01-24-2008, 06:01 PM
quinnysmom quinnysmom is offline
Junior Member
Join Date: Jul 2006
Location: sault ste marie, ontario Canada
Posts: 16

These decisions are incredibly difficult to make and like Carrie said sometimes you are faced with so many very different opinions and treatment methodologies. I live in Canada and there is very much a wait and see approach which in the cases of very problematic and disfiguring hemangiomas can be very frustrating. We have gone through that with our son Quinn whose hemangiomas have caused great scarring and disfigurement on his face.

At this point his eyelid hemangioma has not gotten better but in fact worse in many ways because the eyelashes grow up against his eye, the eylid is scarred and has rolled forward and under. At 20 months there has also been some more growth. The ambloypia and astigmatism have gotten worse and the eyelashes cause excruitiating pain and risk scratching his cornea and losing his vision.

Now finally at 20 months his occuplastic's surgeon sees the need for surgery but it was a fight like you could not believe. He needs it now but the waiting list is one year. He is on the cancellation list so we are hoping and praying his eye is not irreversibly damaged by the time he finally has this long awaited surgery.

Best Wishes to you!

Jen and Quinn (20 Months)
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