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

My baby's not "perfect"

We are waiting for our turn to see him, a man called Dr Lam. I look around the room and there's so many kids. So many kids with glasses, patches, lazy eyes, blind eyes...it makes me so sad. I cry again. I look down at my baby boy and I cry. All I can think is "don't end up like these kids. This sort of thing doesn't happen to me or my family, it happens to other people, not us". Dr Lam calls us in and we sit down, I've got my little boy in my arms and he asks why are we there. Again with the shiny, small eye story. He gets out all his instruments and has a really good look into my baby's eye. I can feel this big ball of anxiety in my chest, like I'm going to be sick, I feel like I can't breathe. The expectancy of it all, just tell me what's wrong!! I can feel the way I'm looking at Dr Lam, like a child looks at their mother when they hurt themselves, "just make it all better. Just fix it". He sits back in his chair and tells us, "what Joel has is a condition called PHPV. He has a cataract as well, and a membrane behind his lens. His eye is micropthalmic, so it's significantly smaller than the other eye". I don't say anything, my husband doesn't say anything. Joel cries because I've been holding his head straight. In my mind I have all these questions but I can't get them out. Finally I say "Can he see?". NO.

Dr Lam tells us our options. He can operate on Joel, on my precious, tiny, longed for baby boy. He can remove the scarring at the back of his eye, the cataract on the lens, he will remove his natural lens. The surgery will take about an hour and a half. I ask "will he be able to see? Will his eye grow?" He tells us that the surgery is done mostly for cosmetic purposes, the scarring is preventing his eye from growin so in theory, by removing it, the eye should grow. Also, removing the cataract means his eye won't glow like it does, it will look "normal" in photos. It's all for cosmetic purposes though, and we're told that if he gets any vision from the eye it will be a "bonus". If he can see shadows, we should consider ourselves lucky. So what are the risks? Increased risk of glaucoma, PHPV eyes are predisposed to glaucoma and surgery increases that risk 10 fold. Detaching the retina during surgery. The usual risks with general anesthetic. Having absolutely no useable vision at all after the surgery. It's a lot to take in so we go away to think about it, surgery is booked for 15th March just in case we decide to go down that road. We are to come back and meet with Dr Lam in 2 weeks. Joel is just 5 weeks old.

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