A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Tuesday, September 21, 2010


I've been thinking about it and there is one thing I regret doing and wish that we hadn't have done. The third surgery. The one to drain the blood from the eye. When I look back at photos of him from a day or two before the surgery, the blood was beginning to drain on it's own accord anyway. I wish we never agreed to the doctors going in and draining it for him. The third surgery was the one that caused bleeding behind his eye and has stopped him from seeing. There are pics on the right side of the blog showing the hyphema (blood in the eyeball) the day before the surgery and you can see his pupil and it was small and round. After the third op it's shaped like the number 8 and it takes up most of his iris. If we didn't do that operation, maybe the blood would have gone away on it's own accord, maybe he'd have no blood at the back of his eye, maybe his pupil would be a normal shape.

Maybe he'd be able to see.

No comments:

Post a Comment