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

Thursday, February 10, 2011

I've been googling...

I've found some more interesting websites for anyone who'd like to check them out:

This one has stories of micropthalmia and anopthalmia (micro is when one or both eye/s is abnormally small- as in Joel's case. Anopthalmia is the absence of eye/s)


Another blog with some good links to visually disabled youtube videos


Another blog - this little boy has a slight cleft lip also which just reinforces my belief that the two (PHPV and cleft lip/palate) are somehow connected. Very frustrating, makes me want to go to medical school to learn more! There's just not enough on the internet about it:


Video of a vitrectomy and lensectomy in a person with PHPV (bit gory for anyone with a weak stomach)


I've posted this before, it's Miss Utah who has PHPV and a prosthetic eye.


A lady who I know on facebook, her blog about her little boy:


Another mum's blog, love the pictures on this one


Great informative website for the medical side of it and has some great pics of eyes:


Another mum blog:


This guy is a PO, specialising in retinal issues, here's a link to his blog post about genetic testing for PHPV:


and I think that's it for tonight, I'll do some more in the next few days.


  1. You are a super mum, and a great woman Thanks for keeping us up to date (even people like me who dont get all the medical terms) But i just love this little guy xxx

  2. Thanks Nancy xxx He's the best little man <3