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 21, 2010

Third surgery, 3 days post op.

He was up before 6 crying, I think his eye is bothering him. Yesterday is was so red, the vitreous was bloody and it had swollen shut again. I really tried to keep on top of the drops yesterday too, waking him every hour to put them in. He is so sick of having the drops in his eye, he has developed some really clever ways to get around it. They are so smart.

We are off to the hospital again today, hopefully to get the results back from the blood test.

I've seen photos of another little boy with PHPV who hasn't had surgery. He has been given a painted shell and it looks amazing. It is very hard to tell that his eye is micropthalmic. All this stress of surgeries and that's probably where we will end up anyway. A big part of me is relieved that's where we will end up. The painted eye looks exactly like a normal eye, especially in photos and although we have only had a few months of putting in and taking out the lens, I feel we could make the transition to the conformer if/when it comes to that. Maybe I'm being naive, I don't know. Maybe I'm feeling a bit defeated about it all. I know God has it under control, I just wish I could see even a few years down the track to know what is the right decision to make now. I am going to talk to Dr Lam about it today. At the moment, all we are really doing is trying to save the eye from being removed, I feel like we have all pretty much given up on any hope of him getting any useable vision from that eye, so maybe the conformer/painted shell is the way to go.

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