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

Thursday, July 22, 2010

"It could be worse"

How many times has someone said that to me.

Yes, I know it could be worse. But it's not. This is MY worse.

"At least he can see out of his other eye"

Yes, I am quite aware of that too, thank you.

It's not about "it could be worse" or "at least he's got one good eye". It's about everything else that goes along with it. It's about not seeing my daughter for 2 weeks because I am at the hospital with Joel all day and trying to calm him down at night and I have no time for her. It's about something happening to his good eye, what then? It's about seeing my baby in pain. It's about not knowing what's coming next. It's about having to deal with people looking at him and wanting to ask what's wrong, but not in case they offend me. It's about him getting teased at school, not being able to play sports, having to wear big goggles to protect his eye. It's about him not being able to get a drivers license. It's about all of that and heaps more. It's about you have no idea what it's like until you're going through it and I wouldn't wish this on anyone.

I started this blog to help other mums and dads and educate other people and I am trying to keep it real. I am being honest, yes it does feel absolutely devastating at times and really great at times. I don't want people to feel sorry for me or for Joel, it's just about support and encouragement.


  1. It just amazes me that people can actually say things like that to someone, it could be worse, at least he could see out of the other eye...WHAT are people thinking!

    You have every right to feel devastated and sad and angry and grieving, this is your BABY!! Your baby that you carried in your womb, you gave birth to, you breastfeed, that you feel every bump and scratch and bruise as if it were happening to you, there are just no words are there to describe the deep connection. I imagine this is worse than if you were going through it yourself. I know you would give anything, anything to make this all better for Joel.

    I wish there was something I could say or do, just know you have so many friends that love and support you and who would NEVER make those comments (or even think like that!) xxxx

  2. I totally know how you feel! I hear the same things constantly from people. I just want to scream at them and tell them...." no its not cp, its not downs, but it IS a problem that we have to deal with for the rest of his life!" Im sorry tracie, I wish I could be there to let you cry on my shoulder, as I know you need to from time to time. or to hug joel (as I would LOVE to do!), but I am here for you anytime you need me! Atleast we have access to the internet to find others in the same situation. He looks amazing and super happy! You are a great mom, just remember that!

  3. I understand all those feelings (This is David's mom from Yahoo...he has bilateral PFVS (PHPV)) it's so hard because although he gets around well enough he can only see (we think) maybe 3-4 feet from his GOOD eye. His bad eye is totally blind due to blood behind his retina...so although he can walk just fine when he switches surfaces (if they look different) he will bear walk over them (even if it's just a painted line in the parking lot...) it breaks my heart! He wears glasses and his bad eye isn't noticably smaller (a tiny tiny bit) but the bad one goes in and people notice...and think he wears glasses for cross-eyed but nope... we don't always get into details with strangers...but it's mostly kids who say to their mom 'look mom there's a baby wearing glasses!' He looks cute with them though so it's ok :) I am hoping that one day they can fix the bad eye AND make the good one better so that my baby can get his drivers licence and be able to see any kids he may have clearly. And oh so much more! I always get asked how I am so strong...well what choice do I have I am his mother! Hugs and know that your not alone in this struggle.