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

Sunday, August 29, 2010

I've noticed something in his eye

On the left side of his iris, there are little white lines that go into the pupil. I have no idea what this could be. I don't know if I'd be able to see scar tissue if it has come back, if that's what it is. His last lot of Atropt drops were Thursday, he's due for another lot tomorrow. They are keeping his pupil large to try to prevent the scarring from coming back.

The lines look like they are part of the iris. It's really hard to explain and really hard to see. I can only see if when I look at his eye from the top, like if he's on my hip and I look down and him, then I can see them. It looks like there's 2 lines.

I am worried about it. Of course I would be, I'm his mum. I just don't want anything else to be wrong with the eye. We're not supposed to go back to PMH for another 3 weeks or so but I am going to ring tomorrow and see if I can get in on Thursday. Starting to wish I just took that private appointment for 7th September when I had the chance.

He's been really unsettled too, rubbing his eye a lot. I've been up at 4am with him most mornings after waking up 3 times during the night. See this is the thing, it could be just teeth that is keeping him up, it could be a sore tummy from the food because he's just started on solids. It's so hard not to think that it's his eye every time he cries. That it's hurting him or the pressure is too high or whatever.

He has started really crawling now too, he started commando crawling and within a week is really trucking along. He's very quick. It has made it more apparent though that he can't see out of that left eye, he has cut his cheek, hit the left side of his face on the corner of the tv unit and smashed his mouth on the side of the table making it bleed. All on the left side.

In the meantime, I'll just keep up the prayer and just know that this is God's will.


  1. Way to go Joel! Crawl away little man :) He will figure out that he has to watch more with his right eye soon enough...I know it's hard not to worry...David used to run into a lot on his left side when it lost vision last winter...now he does fine and almost never runs into anything :) Praying that he figures it out soon so he doesn't get hurt anymore!
    Good luck :)

  2. I hope he figures it out soon, he got his forehead on the base of his high chair today, poor little thing!