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, July 31, 2011

We've had the prosthetic for four days

And I can't believe how easily we can get it in and out. I am really pleased. We had his first fitting on Thursday at 3, left the eye in over night, went back to Geelen on Friday at 9, took it out and made adjustments then put it back in. By the afternoon of Friday though, his eye was very red so we took it out (with a little sucker thing that attaches to the eye and makes taking it out quite simple) and left it out all day Saturday. His eye was very red and swollen shut on Saturday and he didn't sleep very well at all. I was expecting irritation so I wasn't too concerned, after all if I had a large acrylic eye in my socket I wouldn't expect my body to accept it straight away. We put the eye back in on Sunday and he wore it all day yesterday with no problems. Took it out last night, he slept well, then back in this morning and he's been fine.

I am really really pleased with how it is going so far. I am so relieved that putting it in and out isn't half as difficult as the RGP contact lens. The edges of the prosthetic are very thick, so there is more to hold on to when inserting it. With the contact, it would flip out of my fingers because of the thin edges and it took us a good three months to get used to putting it in and out, by which stage Joel had gone totally blind in that eye and it was no longer useful.

This morning I said to him "come and put your eye in Joel" and he pointed to his eye then ran off laughing and played peek a boo for a while around the door. We let him have a little bit of fun before doing it, then Rich picked him up and sat with him on his lap on the lounge. As I came towards him with the eye, he started crying and screwed his face up and thrashing around. It's hard to have to restrain him to put it in and I feel really guilty for being the one to cause him discomfort when I put the eye in. Rich held his forehead and his hands and I lifted up the top lid, slid the eye in, pulled the bottom lid down and it falls into place. All up, putting the eye in takes about 8 seconds but it feels like longer when my little baby is crying. As soon as it's in we give him cuddles, show him toys and distract him and he stops crying pretty much straight away. He will rub the eye for a minute or so but after that he just carries on as usual.

Once we knew we could do the eye quite quickly, we asked Annalise if she wanted to watch. She was facinated but once we took it out she said "Oh no, mummy! Now Joel can't see!" So innocent. We asked her if she wanted to hold the eye and she sat down on the mat (no way was I letting her hold it on the hard floor! If we had to pay to replace it, Joel wouldn't be getting one for a very very long time!). She turned it over in her hands, put it on the mat, showed her Barbies and ponies and asked if she could keep it in her room. I told her no, but that she could help me clean it and put it back into it's box until we needed it again so she helped to wash it with saline and dry it with the paper towel. When I was putting her to bed that night, she said she wanted and eye that she could "pick out". I told her she didn't need one because when she was born, there was nothing wrong with her eyes but she said "when I was a baby, I had an eye like Joel but I'm a big girl now so I don't need one". They know how to tug at your heartstrings, kids. She asked if the new baby will have to go to hospital and have a new eye and I said that I really hope not, I hope she has beautiful big eyes like her sister.

We keep the eye in a little plastic container with some paper towel on the bottom to stop it flipping over and rolling around. We also clean it with saline and use a conditioner from Bausch and Lomb before we put it in to Joel's eye. This helps to keep it lubricated and slippery. So far, it has been one of the easiest experiences we've had with Joel and for that I am so grateful.


  1. Wonderful news Tracie, you have such beautiful children. I'm glad they are both so happy and that the prostheticis easy to use and care for, about time something was easy for you and Rich.
    Keep smiling and take care xoxo M

  2. I'm so happy for you Tracie and i'm so happy that the prosthetic is easy to use. You guys are an amazing couple and what an amazing journey you guys have ahead of you. Praise God xx