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

Monday, June 27, 2011

How to get an appointment

I recently had an email from a lady with a child who is suspected of having PHPV. I say "suspected" because she has been finding it really hard to get answers. I absolutely know how frustrating this is, being told you have to wait 6 months for the next available appointment, needing referrals etc etc. Think about it though, if YOU started going blind in your left eye, would YOU wait 6 months to do something about it? The answer is probably "no", so why are we expected to wait that long for something to be done for our kids? When they are babies, their brains are being wired from learning, what goes in auditorily and visually. If one eye isn't seeing clearly, the brain will learn to ignore that eye and then the damage is done. If your baby is 8 weeks old and you get told you can't get an appointment until they are 6 months old, that four months of processing your baby's brain is missing out on. If they have surgery at 6 months, it's another month until you can start properly patching and getting some light and images into that eye. It's too long to wait.

When we noticed something was wrong with Joel's eye, we went straight to the Emergency department of our state's biggest children's hospital. I really think this was the best move we made (we had no idea at the time that it would be a blessing, it was a Sunday and everywhere else was closed!). Although they couldn't help us on the day, we were immediately referred to the Senior Opthamologist Dr Lam. We were able to get an appointment with him for the Thursday because I called and called, begging to be seen. My calling had nothing to do with being pushy or demanding, it had everything to do with being desperatley worried for my newborn baby. You can read the blog posts from the very start and see just how desperate I was! I was hysterical and didn't cope with "not knowing" very well at all. After we'd seen Dr Lam and he had diagnosed PHPV / PFVS, I wanted to get a second opinion. I googled Pediatric Opthamologists, found the only other two in WA and went to my GP and got referrals for them. I called their offices the next day and was told there were no appointments for 4-6 months. This was obviously too much for my hysterical mother's brain to take so I had an absolute melt down over the phone, bawling and babbling and begging to be seen. I got in within 4 days.

I am not saying to scream like a banshee until they agree to meet you, but you are the biggest advocate for your kids so don't be scared to be a bit more pushy than you naturally would be. There will be plenty of other times in your child's life they need you to stand up for them, PHPV kids just sometimes need that to happen a bit earlier!


  1. So true! I have cried on the phone a few times to the doctor/nurse. I wasn't trying to play anyone. It is how I felt at the time. They ended up helping my boy quickly. You are really doing a great job!

  2. Good for you for advocating for your son's eye health! You're right, a wait of months is just not acceptable, and we're the only ones that are going to advocate for our kids, at least at first. I know a lot of people have also had luck asking to be put on a wait list in case someone cancels. It means you might have to drop everything when something opens up, but it can get you in quicker (in case someone else reads this and is looking for more suggestions for getting seen more quickly).

    -Ann Z

  3. Great idea with the waitlist, Ann :-)