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

Thursday, September 2, 2010

So far,,,

I know there are a few new people reading the blog so to save you going back and reading all the posts looking for Joel's history, this is what's happened.

Diagnosed at 4 weeks.
Lensectomy (removal of the lens of the eye) and vitrectomy (removal of some of the white of the eye) at 2 months and 5 days old.

We patched and put a RGP contact lens in his eye for 3 months.

At almost 5 months old the surgeon found scar tissue in his eye (caused by the first op). Another operation to remove that scarring at 5 months old.

2 weeks later, his eye was full of blood (complication from the second surgery). Another operation at 5 months 2 weeks old to drain that blood.

2 weeks after third surgery we were told he has blood at the back of his eye now (most likely caused by the third operation). During the second operation, part of his iris was pulled off, causing quite a large bleed. There is no way to drain that blood, which is stopping any light from getting to the back of his eye, so he can't see.

Last week I noticed the scar tissue has come back in his eye. The surgeon will not operate on him anymore as it will affect his good eye. We have an appointment in a week to discuss what happens next.

I have been asked if we regret having surgery. Yes and no. Yes because it has had no effect on his eye, except to make it worse by giving him another problem to deal with (scar tissue and blood behind the eye) and no because his cataract looked quite bad before and at least that's gone. We did what we thought was best at the time. He did have some vision in that eye for 3 months so if it wasn't for the blood in his eye caused by the second surgery, he would still have that vision. But then, he may have lost that because of the scar tissue coming back a second time.

It may sound all doom and gloom but it never is, not with God. This scripture is one that Rich found and I'm believing it's true for my baby boy.

John 9:1

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of Him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."


  1. Thank you for the summary and for the scripture...very beautiful!

    ~ Sheryl Maddox (PHPV yahoo group)
    Mom of 5 month old with PHPV :)

  2. Thank you very much for the efforts you have taken to share the best of the information we need.
    We are the parents of RUDHRAN ( microphthalmic PHPV male baby )
    We are MUTHUVEL (father) and SURIYA (Mother)

  3. Hi Muthuvel and Suriya, I am glad you found the blog and please, if you have ANY questions or just need to talk, feel free to email me. I saw your post on the facebook page too. It does get easier, my heart goes out to you for what you are going through right now though. Rest assured, from my experience where you are now is as hard as it gets. Once you have made a decision, things seem to take on a life of their own and it does get a bit easier to deal with. Arm yourself with knowledge.

    Hi (again) Sheryl! Hope you are going well :-D