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

Monday, July 26, 2010


Well, even though the hospital rang to cancel my appointment, I turned up anyway. I waited until I could see Dr Lam and finally got some reassurance.

The pressure in Joel's eye is 30. Anything less than 20 is considered normal. He has no blood at the front of his eye but there is blood at the back which is preventing him from seeing. We are praying it goes away as they won't operate on it. He essentially has glaucoma as well. It really has gotten to the worst point it can without them having to remove his eye. Although, having said that, with PHPV it really is a case of "expect the unexpected". These eyes don't behave how a normal eye would, so given the exact same surgery, circumstance and treatment as a non PHPV eye, the end result can and will be completely different and unexpected.

I'll go back to the beginning for a minute:

Joel's first operation - lensectomy and vitrectomy - was when he was 8 weeks and 5 days old. He had a second op to remove scarring that formed as a result of the first operation when he was 5 and a half months old. After that op, his eye - the anterior chamber - filled with blood so he had a third op the week after the second to drain that. So far it looks good at the front of his eye but now the back of it has blood in it and they're not going to do a fourth op to remove that blood.

Joel's eye is turning outwards a lot, he hasn't had a contact lens in for about 6 weeks, so no patching or anything. His eye also looks a lot smaller than his good eye now, I think that's because he's getting so much bigger and the difference is more noticeable.

He also has high pressure in his eye so we are using another lot of drops. We use one lot 5 times a day, another 4 times a day, another once a day and another twice a week.

One specialist we see has pretty much given up on the hope of Joel getting any sort of vision from that eye. The other doctor says to just wait a month or so and see what is happening with the blood at the back. If it goes away we will start the lens again, if not, I don't really know what the next step is.

I asked about a conformer or something to help his eye socket grow but that's not something they are looking at doing now. That worries me that he is missing out on having that opportunity to help his face to grow.

We have another appointment for Thursday.

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