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, May 19, 2010


So every day I have to patch Joel's good eye for 2 hours. The purpose of this is to strengthen the muscles of his PHPV eye and help to build the pathways to the brain for that eye. Not being able to see out of it from birth has meant that it's become lazy and turns in toward his nose. We have a few boxes of patches, they are like almond shaped bandaids that cover his entire eye. At the start I had some huge problems getting the patch off his face, I would leave a huge red mark and lots of sticky glue behind. It hurt him alot too. One trick I have found is to put the patch on the back of my hand a couple if times before putting it on Joel. This takes away a bit of the sticky and means it's easier to rip off. I will have to find a better trick as he gets older though because he will just rip it off himself if it's not stuck on properly.

He doesn't like to be patched. Because he doesn't have any useable vision in that eye, I assume all he can see is blurry shadows. He wants to be held, nursed, cuddled and talked to while he's patched so I have to be organised enough to dedicate those 2 hours to him every day. I have to find an activity and have food ready for Annalise so she's happy too. I have found the easiest time of the day to patch is from about 3-5. I can keep him awake for that long an Annalise is usually sufficiently tired from the mornings activites that she will sit and watch a movie.

Once I put the patch on I try to distract him straight away. He has a teddy bear that plays music and it's face lights up so I show him that. I assume he can see the glowing light. I don't really know. Then we walk around the house looking at things and I tell him what we're doing. It's all very exciting stuff like " oh look Joel, we're cleaning a cup". If we just sit down and stare blankly at nothing he grizzles and eventually cries. Some days the two hours goes forever. Some days it goes quickly. Every day it makes me sad to see him with his patch on but I know it's for the best.


  1. Your blog sounds so similar! I also found sticking the patch on my skin a few times was so much better for William. I do feel that William can see a little - but I could be dreaming. We've done the patching for 2 weeks now and I have to admit he's happier with it off but when its on we are getting some smiles and he looks like he's looking at his hands and toys above him - but too early to tell - we'll keep on trying and I'll keep following your blog to see how Joel is doing. Next week we get another contact lens that makes him focus a bit closer to him as at the moment he's got one that makes him focus too far away - I'm dreading them putting the lens in again and then I have to learn how to put them in and out myself!!! Cheers Kirstie

  2. Hey Kirstie, I am getting better at doing ot on my own so if you need any tips just ask! How do you find the new lens? Did they reshape the old one to more of a point?

    I've also heard that you can put some antacid stuff on the patch before putting it on their face, but I am not sure I'm going to try that just yet!

    Keep smiling :-D