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, October 14, 2010


It has been on my mind for a while to start looking into doing something about the cosmetic appearance of Joel's eye. Every time we go out, someone will comment on it, usually along the lines of "does he have a sore eye?". The iris is very dark and the pupil is huge, giving his eye the appearance of being just a black ball. There is that, plus the fact is it starting to get quite noticabley smaller than the other eye. It will only be through God that he gets vision, so between now and then we need to look at helping his face to grow while the eye isn't growing.

I have just spoken to a man called Paul who is an Ocularist here in Perth (an Ocularist is someone who specialises in creating and fitting artificial eyes). He has suggested that the best way to go is to put a false eye over the top of Joel's natural eye. I have renewed hope now that Joel will look just as normal as the next little boy and I am so happy because there is a picnic in Kings Park in a few weekends time for all the kids who have artificial eyes!! I will get to meet other parents who have little kids with artificial eyes, contact lenses, conformers.... I am just so happy that his eye is going to look a lot more normal than it does now and I am really looking forward to meeting the other parents and seeing the other little kids.

This is the place I will be taking Joel, I need to send them an email to make a time to take him:


And this is the link to the picnic. What an amazing thing that I called today, this is on in 2 weeks. Love how God works ;-)



  1. That's fantastic Tracie... what a great thing being able to meet all of the other children who have had similar cosmetics done to their eyes. It would be hard to imagine what it would look like without having met others who've had it done I would have thought. So happy for you :-)
    So do they put articifial eyes in children, or do they do something else until they've finished growing?

  2. What they will do with Joel is put a painted lens in his eye because he is lucky enough to still have his eye. If the eye is removed they can fit a prosthetic eye which would require constant adjustment (more so than Joel's artificial eye will). I am just so happy, this is just amazing for him.