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, November 9, 2011

It's been so long!

Joel broke our laptop so I've not been able to post as much as I would like to. Thanks to everyone who has messaged me to see how he is doing, he's great and it's really appreciated!

Since my last entry, I have had another baby. Her name is Imogen and she is just a delight. Joel wasn't very taken with her at the start, but almost 3 months on and he's starting to come around. She is a great baby, sleeps better than Joel does and he's almost 2! Almost 2, can you believe it? Two years full of learning, adjusting, tears, happiness, ups and downs with his eye and we are finally seeing the light at the end of the tunnel.

I can put his eye in and out on my own which makes life so much easier. I lay him on the bed and straddle him, pinning his arms between my legs and holding his head with my left hand while I put his eye in with my right. It doesn't take very long at all and he doesn't cry, just wriggles. When we were restraining him more forcefully it was actually harder. He would cry and scream and go red in the face and sometimes wet himself. It was very traumatic for all of us. This way, we do it when we're ready, play on the bed before I put it in and sometimes he will go lay on the bed when I say "Let's put your eye in Joel!" I am trying to make it a fun thing for him and it's definitely working.

I've posted a photo of the little bottles we need for his eye - there's a plastic container to keep the eye in, a little purple "sucker" that suctions on to the eye so we can take it out, a cleaner and some comfort formula which we put on the eye before it goes in. It's like an oil and lubricates it so it's more comfortable for him and slides in easier. It's all stored in our Boston bag. The other day, Joel got to the bag and hid the sucker. It took me 4 days to find it, during which time I didn't put his eye in because it would have been too hard to take out without that! I think that was his plan, cheeky boy. I finally found it qrapped up in a flannel in the change table.

A week after Imogen was born, joel went in for another operation, this time to have grommets put in. They have made the world of difference. He talks and babbles so much now, he really didn't have very many words bbefore the op and now he has heaps. Thatw as his fourth (and hopefully last!) general anesthetic and he bounced back fine.

On Sunday we went to a picnic organised by the Geelens, who are the Ocularists here in Perth. It was so great to meet some other kids with prosthetic eyes and also a lot of adults who have lost an eye through illness or injury. The kids enjoyed the day. I told Annalise we were going to meet some other kids who have "eyes like Joel" and she said "noooo, there's no one else like Joel!" How right she is! There really is no one like him, love that little boy.

The other day Annalise came up to me and said Joel's eye looked "funny". I thought maybe it had turned or something so I had a look but it was in perfectly so I asked her what she meant. She said that his pretend eye looks funny and she loves him with his real eye in. she is so sweet about his eye, she loves him with or without his prosthetic but she'd much prefer if he just had his normal, yellow, blind eye.

We have another appointment with Joel's surgeon on 8th December. it's just a check up. At our last check up, we were told that the dried, yellow blood in his eye would drain and we'd be able to see his iris but that hasn't happened. The eye is a yellow/green bruised colour now, which is fine, just a lot more noticeable that something is wrong beqcuase it is almost flourescent. It stands out a lot, and from a distance, when he doesn't have his prosthetic in.

All in all, I feel like we're over the worst of it. No more surgeries, the prosthetic is going great, he's happy and healthy. The only other thing that could possible happen is high pressure at his check up, but for now I think he is comfortable.


  1. It really does look great. Very natural looking! I had to look at your older pictures to see which eye was affected to make sure I was looking at the prosthetic eye.

    I am so happy that you have found a way to insert the eye by yourself. I am now able to insert a contact lens without assistance in Austin. Not near as a big a deal as a whole eye, but it still makes life easier for all of us.

  2. Such a beautiful boy! Cant believe how much he has grown :) His eye really looks fantastic. Steph xx

  3. Hi!
    How is joel doing?
    I am transferred to a remote village and even internet is accessbile only if i travel for one hour.
    I read your latest posts and understood that you have had a new baby. Congrats!
    Joel looks very cute,confident and cheerful.

    Please clarify the following.

    The shell fixed to my son is not custom made.
    It is transferant and over sized. Many time i could see the tears between the shell and the cornea. My doctors simply say, " remove in the night. fix in the morning. clean often. come after six months."
    Please tell me
    1.The impact of the size mismatch
    2.Now my son is 15 months old. When should we fix the custom made shell like your son's?
    3.Should i remove this readymade shell everyday and clean?
    4.Should we leave the eye without this shell in the night?
    5.I am using a drops prescribed by the doctor and going to the clinic once in a month.I am unable to remove the shell. It is very tight. In the clinic also they struggle much to remove it.For the last 10 days he had a severe infaction. When the nurse removed the shell, lot of discharge poured like the pus in the wound. It was horrible. Please tell me how can i prevent it in future.

    I am worried. The doctors simply say " come after six months"

    Just a check up after six months is enough?

    6.Is it painful for my son to wear this shell?.He rubs his eyes often.

    Please give ur email. Mine is seriouslysportive@gmail.com,

    My namne is Muthuvel
    My son is Rudhran.

    My wife conveys her wishes to your family on the arrival of the new member to your family.

  4. Hi Muthuvel, it's good to hear from you again.

    I am sorry it's taken so long to get back to you, I really hope that in the mean time you have been able to get a custom fit shell for your son. You should also be able to ask for a sucker to get the eye out at night, there is a little picture of the sucker we use. I do know that removing the shell every day can sometimes cause more infections and problems than if you were to leave it in for a longer period but I can't say for sure how long would be too long. I know if we leave Joel's in over night, his eye is very irritated in the morning.

    Please email me any time traciereinikka@westnet.com.au