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, May 12, 2010

Waiting for a diagnosis

When we took Joel to the hospital, I explained the shiny eye to the triage nurse. She had a look and told us to wait. We were waiting for ages and there was another family there with their son who looked about 3. The dad was getting really agitated with how long it was taking to be seen and kept asking "how much longer?" and every time a doctor came out to call the next patient, the father would tsk and sigh when it wasn't their turn. All I could think was "Yeah your kid has a cough, mine is blind, wait your turn". Finally Joel's name was called and we stood up to go in and THAT father cuts in front of us and says to the doctor "I need to see you, can we talk? My son is here and we've been waiting for a really long time and he hasn't had anything to drink". The doctor then takes this other father into a different room so we are left waiting. Again. Sitting in this room looking at our sleeping baby boy, waiting for a doctor, waiting for help, waiting for someone to come and tell us what's wrong with him. The doctor comes back, apologises and asks us why we're there. Again we explain his shiny eye, the fact it's smaller than the other eye. She has a look, shines some lights into his eye, weighs him and says "I'll need to get the Pediatrician to look at him". So, we wait. An hour passes, my husband and I sitting in a tiny room looking at our beautiful sleeping baby boy, trying to guess what's wrong...cataract, cancer, blindness...what if, what if...another hour...we're not talking, just looking at each other now. I'm crying. He's angry...Pediatrician comes in. Asks us what's wrong. Again we explain his small, shiny eye. She has a look, shines some lights in his eye, covers the good eye and says "We'll have to get the Opthamologist to look at him". We ask her what does she think it is? She says "It looks like a cataract but I'm not sure". We ask if she thinks he can see and she says.... NO....I cry again. My baby boy can't see.

We ask when can we see the Opthamologist and she says we can see the Junior Eye Registrar today but he deals more with eye traumas and it's probably best if we wait to see the Senior Surgeon. We know from that suggestions that the disgnosis isn't going to be good. This was on a Sunday. I am told the Senior Surgeon's office will call me during the week to make a time, just go home and wait....

By Tuesday I haven't heard anything from them so I call to make an appointment. Thursday at 1:15. 2 days and we'll know what's wrong.

All day Tuesday and Wednesday I google and research as much as I can about problems with babies eyes. I come up with a best and worse case scenario. I tell my husband:

Best case is that it's just a cataract and they can remove that and he'll be able to see.
Worst case is retinoblastoma, cancer of the eye. They'll have to remove the eye.
In the middle is a condition called PHPV, man I really hope he doesn't have that!

I tell myself for 2 days "it's just a cataract, it's just a cataract".

Waiting is killing me, I just want to know what's wrong.

Thursday we go to the hospital to meet with the Senior Surgeon.

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