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

Tuesday, November 30, 2010

We are all set to get a prosthetic eye

I have met with the Registrar at PMH and he has spoken to Joel's surgeon and they are happy for us to proceed with getting a prosthetic.

On one hand I am really happy that Joel will be getting an eye to help his bad eye look a bit more "normal". On the other hand I am a tiny bit sad because it's basically saying he will never see out of that eye. I am starting to come to terms with that though, I have probably dealt with it as much as I can and have accepted it. Because the hospital is happy for us to go ahead with the prosthetic, they will cover the cost. We just have to wait for them to send a letter to Geelen and then we can meet with them again.

Here is a link I found to a website with lots of pics of kids and adults with shells.


Saturday, November 13, 2010

Anterior Chamber Hyphema

After Joel's second surgery, he developed an Anterior Chamber Hyphema and then had a third operation to drain the blood from that. I believe the hyphema was caused by the surgeon pulling part of the iris away during the second oepration. The blood that went to the back of his eye, caused by the complication from the second op, is what is preventing light from getting through and causing his blindness.

I just can't seem to get over the fact that it happened. That an experienced surgeon would make, what seems like to me, an elementary mistake. I have done a lot of research into the rate of this sort of complication and it is very small. This is all leading me to question whether or not our preferred surgeon, the one we requested through our private health insurance, is actually the one who did the operation or if the Registrar who we saw in the weeks leading up the operation was the one allowed to do this to my baby boy's eye.

This is some information I have found on the anterior chamber hyphema.


Last week, I spoke to a different Registrar at PMH to ask what they believe the next step should be. They agree that he should get a prosthetic eye which on one hand is good because that means that if we are referred back to the Ocularist by PMH, they will cover the cost of the eye. On the other hand, it's NOT good. This means that we are giving up on any hope of him getting any vision from that eye, for it to heal and look better. I know it's been ages since his last operation but I have found myself hanging onto some hope that his eye will just one day look exactly like the good one. I know it's not going to happen but there is a part of me that doesn't believe it. I know God can heal him but then I feel like I am being some sort of religious freak by keeping that faith. It's so hard. If I cover the eye with a fake eye, how will he ever see? It won't be getting used at all.

We are going back to PMH in the next couple of weeks and I am going to ask for Joel's medical records. I want to know who did that surgery and I think once I know that I will be able to put all my worries to rest and move on with the next step.