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

Friday, June 24, 2011

Financial costs

Even though we reached the Medicare safety net within 3 weeks of the new year, our out of pocket expenses for specialist appointments, prescriptions, private health insurance and the excess for hospital admissions are, most of the time, more than we can afford. Yes, it is our choice to have private insurance and for that I am grateful - we were able to choose our surgeon for Joel and can choose our hospital for his surgeries and exams, but the insurance doesn't cover things like his drops or the gap for our specialist appointments. We don't have a health care card to enable us to access cheaper medications, therefore every bottle of drops costs us around $18. Since the start of this year, we have bought 18 bottles. Seeing Dr Lam costs us around $75, with about $30 refunded through Medicare. His hospital admissions are $250 each time and on top of that we pay about $400 in "professional fees" (I have no idea what they are, the invoices come in with codes so we can put that through our insurance and Medicare.)

This pregnancy, I have been classed as high risk due to a placental abruption, IUGR and subchorionic hemmorage, so we are spending huge amounts (around $190 a week) on scans and consultations with the Maternal Fetal Medicine specialist. I honestly don't know how we have survived financially for as long as we have. But now, it has all come to a head and Richard has had to take on a second job to try to pay some of our medical bills. There are so many things we need and want; a new car, to finish off our front yard for the kids to play outside, new clothes, things for the kids, but it all has had to take a back seat to these medical costs.

I guess it's one of those sides to having a child with something like this that people don't often think about. More so, we are asked how we are doing emotionally, how we are dealing with the pregnancy complications, things with Joel's eye. The money side of things just doesn't enter most people's thoughts. We are lucky that we live in Australia and have access to a lot of free health care and services, it's just seems that if you have private insurance, earn a decent wage and work hard, you are punsihed more than rewarded when it comes to these things. One lady I know gets the same drops for $2.60 because she has a health care card and doesn't work. It's hard not to get bitter about it. My husband works so hard for his family yet we have no spare money after paying so much for the same services that other people receive for free.

It has been suggested to us to look into what benefits we can receive for having a "disabled" child, but to me, Joel isn't disabled. He just has one eye that can't see. I really hope he never thinks of himself as disabled, that he knows he is just as capable fo doing everything else that other little boys can do.


  1. Amen Tracie, He can and will accomplish anything he wants and will probably achieve more because he will have a different perspective than others. He is already an awesome little boy with a great spirit xxx

  2. He is my awesome little man <3 So proud of him.