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

Wednesday, July 7, 2010


I've put some photos of Joel up on the blog, not for sympathy or to feel "poor me". I want other parents whose kids might have to go through this to see the reality of it. I wasn't prepared for how he would look or react after this surgery so if it helps another mum then that is great.

The quality of the photos isn't very good, sorry, although it does make his eye look a lot better than it does in real life!

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