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

What his eye looks like

I'll try to describe what his eye looks like, just for any mums or dads who may have little bubs having eye surgery.

The vitreous (white part) is very blood shot and looks inflamed. The iris (coloured part) is darker than his normal eye and the pupil is a large oblong shape, like an oval but not perfectly round. It has dents and bumps in it. It doesn't sit in the middle of the iris, it falls more towards the bottom of the iris, giving him a sort of sad look in his eye, like you see in cartoon drawings. Obviously the eye is micro so it is probably 5mm smaller than his good eye. The small red veins on the lid of his eye fuse together in one spot. I have no idea why this is, I asked the surgeon ages ago and he just said it's because that eye isn't normal anyway, it's just another funny little thing with it. The bottom lid is swollen, I can only assume that's from being held open with the gadget during the surgery.

We're not playing particular games with Joel that put pressure on the eye, like lifting him over our heads with his head pointing down, nothing that makes him go upside down and I have no idea how we wil do this, but he's not supposed to cry too much because that increases the pressure. He's not a real crying baby a lot of the time, really only when he's in pain. I have noticed that when he's on his tummy his eye goes very red, so I've been sitting him up in the high chair to avoid that. He's at that age where if you put him on his back he'll just roll over to see what he's missing out on. Last night he had some tummy time and afterwards he vomited which he's never done before. They can vomit if the pressure in the eye gets too much so I am guessing that's what it was.

Other than that, he is such a good little boy. I really feel honoured that God chose me to be his mummy. There are definitely moments when I don't think I can handle the pain of seeing him in pain. I look at him and get sad but then I know I am going to wake up the next morning and see his smiling face on the pillow next to me and I am so blessed that I get that. I get to cuddle him whenever I want, I got to bring him home from the hospital, he's not sick, he's perfect.

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