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, January 25, 2013

EUA and new prosthetic

Joel has been under another GA and had another mould made of his eye. The old eye was rubbing and causing a lot of irritation and he just flat out refused to wear it. The new one is taking some getting used to. He has had a fair bit of irritation from the new one and we are taking things really slowly. There's some new pictures of him on the blog :-)

Joel is 3!

Can you believe it, he's 3. Feels like a year ago I started this blog and had all those emotions that come along with something being wrong with my perfect newborn. His eye now is something that I don't even think about, except if someone kindly points it out at the shops lol. I don't mind answering the questions, I do mind people who stare but hey, can't help that. He had a great birthday, was well and truly spoilt and now has enough Spiderman gear to start his own retail store. His favourite things are dinosaurs, trains, trucks (especially rubbish trucks), dirt, mess and anything chocolate. He is still the absolute sweetest boy you could ever meet and is quite aware that something is different about his eye. If kids point and whisper he will look at me, waiting for me to say something to them or answer their question "what happened to his eye?" He is just beautiful. We didn't get a spot at the Guide Dog Association kindy. Apparently they had lots of applications earlier in 2012, we didn't get ours in until October when we found out about it. I am thinking about putting him in a 3 year old kindy program because he is so ready for something, I'll just have to find somewhere that isn't full. I think he will like that.

Thursday, September 20, 2012


Poor Joel has conjunctivitis. He can hardly see, but it is getting better, poor little guy. His eyes have swollen up so much. I wouldn't normally go to the doctor for something like conjunctivitis, but I did take him because it was so bad and it came on so quickly. Literally within a day he had gone from clear eyes to caked full of puss. He is on Amoxcillan and Chlorsig which is helping. He hates having his eyes cleaned out though, he will only let Rich do it. We're waiting to hear back about the kindy, I'm so hopeful that he gets in. He begs to stay at Annalise's school every morning and loves to play there for ages after school. I've for lots of things planned for them over the school holidays to try to keep him amused, he's in that stage of asking a million questions about everything! He is sleeping better at night now, finally. He only wakes up once, if at all, each night. It's good for me because I'm up with Imogen at about 2am, then Joel was waking up at 11pm and 4am. We have moved house while we build a new house and he has settled in to his new bedroom well. He is still the sweetest little boy, always cuddling and kissing imogen so I'm hoping she doesn't get conjunctivitis too.

Sunday, September 2, 2012

Kindy at the Guide Dog Association

I have been thinking about joining a playgroup for kids with vision impairment. I called up the Guide Dog Association after they came up in a google search. When I spoke tot he Receptionist, she said they didn't have a playgroup or know of one, BUT they do have a 3 year old kindy program. To say I was excited is an understatement! Joel is so ready for school, every day when we drop Annalise off he wants to stay, he even packs his bag every morning just like her and keeps saying "my school, mummy?" I was going to put him in the 3 year old kindy that was recommended to me by another mum but this program at the Guide Dog Association would be perfect for him. He will be 3 in January so I've filled out the forms and we're just waiting to hear back if he's been accepted. They also do a different program to help visually impaired kids, I guess it's kind of like vision therapy. I've filled out the forms for them to get all of his information from his surgeon so hopefully they can help him with that too. He hasn't worn his prosthetic in a while. He really objects to having it put in, like REALLY. He just never seemed to get used to having it done and most days, would go and lay on the floor for ages after having it put in. I had to restrain him and hold him down on the ground. I just felt like I am the one who is supposed to nurture him and love and protect him, and here I am every day, forcing him to have the eye put in. I really hope that he asks for it when he's ready, we've been talking about it and I've told him it's there and if he wants to wear it, he can. I always said that if it didn't work out with the eye, that's ok. He's still 99% oblivious to the fact he's different, sometimes he does look in the mirror and point to his eye and say "broken". A year ago, the thought of that would have sent me into floods of tears but now, it's just like :yeah, baby, it's broken but you're ok!" There was a disco at Annalise's school the other day and all the kids stood in a circle and stared at him. I felt so bad for him. It is so hard to see them all staring. Then they went up to their mums and were saying "that kid has a weird eye" and things like that. I wish their mums would ask what was "wrong" with it or something, instead of just saying "oh ok, go play". We have moved and the new school only has about 150 kids so everyone will know him eventually and it would be good for them to actually know what's gone on with him and why his eye looks like that.

Monday, May 28, 2012

Looking at photos

I've just put up some new photos and it got me thinking. I remember when I first found out Joel had PHPV. I googled it, of course, and came up with all these photos of kids with one small eye, one fake eye, one bad eye, one blind eye. It was horrifying. All of these photos looked so abnormal to me, even the good ones. I couldn't imagine having a child who looked like that. What would people think? What would people say? Will my baby look like those kids? Maybe he will be different, maybe no one will be able to tell. Maybe we'll be lucky. The parents had posted these pictures with comments like "just like every other two year old!" or "Little Jonny playing in the yard". I thought, how could they think that their child is really just like every other kid? They're kidding themselves. OBVIOUSLY they're different, they must just be saying that to make themselves feel better. Well you know what? Joel IS like every other kid. He climbs, plays, rides a bike and causes chaos and destruction a hundred times a day. He has an adventurous streak and no fear. He is sweet and loving and affectionate and holds a grudge if he gets in trouble. His eye does not hold him back at all. Not in any way. If you're looking at these pictures of Joel for the first time, the good and the bad pictures, I know how you feel. I know how your heart breaks thinking your child is going to be different and how unfair it is and how you wonder how you'll get through it. The uncertainty is infuriating. It's frustrating and depressing not knowing how your child is going to turn out. Not knowing if they'll be able to see eventually, how many operations they'll have, if they'll end up with a prosthetic eye or glasses or a contact lens. One thing I can say with 100% certainty is that in 2 years time, your child WILL be just like every other child. Nothing will hold them back. Nothing. Sure they might bump in to the odd wall or miss a step, but what kid doesn't. There will be people who will notice there is something different but most of the time, they won't say anything. You will just know that they've noticed. You'll pick it up after a while. and that's fine, it doesn't matter. Let them notice. Let them wonder. If they ask, just tell the truth. After a while of telling it, you won't cry anymore. It won't bother you. You'll realise that yeah, PHPV does suck and it's not fair that it happened to you and your baby, but it won't be all consuming. It won't be the first thing you think about when you wake up and the last thing on your mind at night. You won't think about it during the day and well up. It will just "be" and that's fine. You will be fine. Your baby will be fine. You'll surprise yourself and your child will surprise you, it really will be ok.

Thursday, April 26, 2012

Joel is now 2!

I can't believe how fast time flies with three kids! Joel has turned two, Imogen is 8 months old and Annalise will be 5 very soon. We are all doing very well, albeit very busy! His eye started to irritate him about a month ago so we went back in to see the Geelen's and they have bulked up his prosthetic with acrylic and it now fits a lot better. He still absolutely hates having it put in every day, although it is getting easier to take out at night time. It's probably a relief to have it out, like when you get home and take your shoes off and have that "Aaaaaah!" feeling. The only thing I have really noticed that he has great trouble with is going down steps. If he is holding my hand he will just fly down, his feet don't even touch the steps. If he's going down on his own, he will use both hands to hold railings and go don sideways. He does do other small things that only I notice because I know he can't see out of that left eye, like looking at the iPhone at a funny angle. Nothing major, he's really just like every other two year old boy!

Wednesday, November 9, 2011

It's been so long!

Joel broke our laptop so I've not been able to post as much as I would like to. Thanks to everyone who has messaged me to see how he is doing, he's great and it's really appreciated!

Since my last entry, I have had another baby. Her name is Imogen and she is just a delight. Joel wasn't very taken with her at the start, but almost 3 months on and he's starting to come around. She is a great baby, sleeps better than Joel does and he's almost 2! Almost 2, can you believe it? Two years full of learning, adjusting, tears, happiness, ups and downs with his eye and we are finally seeing the light at the end of the tunnel.

I can put his eye in and out on my own which makes life so much easier. I lay him on the bed and straddle him, pinning his arms between my legs and holding his head with my left hand while I put his eye in with my right. It doesn't take very long at all and he doesn't cry, just wriggles. When we were restraining him more forcefully it was actually harder. He would cry and scream and go red in the face and sometimes wet himself. It was very traumatic for all of us. This way, we do it when we're ready, play on the bed before I put it in and sometimes he will go lay on the bed when I say "Let's put your eye in Joel!" I am trying to make it a fun thing for him and it's definitely working.

I've posted a photo of the little bottles we need for his eye - there's a plastic container to keep the eye in, a little purple "sucker" that suctions on to the eye so we can take it out, a cleaner and some comfort formula which we put on the eye before it goes in. It's like an oil and lubricates it so it's more comfortable for him and slides in easier. It's all stored in our Boston bag. The other day, Joel got to the bag and hid the sucker. It took me 4 days to find it, during which time I didn't put his eye in because it would have been too hard to take out without that! I think that was his plan, cheeky boy. I finally found it qrapped up in a flannel in the change table.

A week after Imogen was born, joel went in for another operation, this time to have grommets put in. They have made the world of difference. He talks and babbles so much now, he really didn't have very many words bbefore the op and now he has heaps. Thatw as his fourth (and hopefully last!) general anesthetic and he bounced back fine.

On Sunday we went to a picnic organised by the Geelens, who are the Ocularists here in Perth. It was so great to meet some other kids with prosthetic eyes and also a lot of adults who have lost an eye through illness or injury. The kids enjoyed the day. I told Annalise we were going to meet some other kids who have "eyes like Joel" and she said "noooo, there's no one else like Joel!" How right she is! There really is no one like him, love that little boy.

The other day Annalise came up to me and said Joel's eye looked "funny". I thought maybe it had turned or something so I had a look but it was in perfectly so I asked her what she meant. She said that his pretend eye looks funny and she loves him with his real eye in. she is so sweet about his eye, she loves him with or without his prosthetic but she'd much prefer if he just had his normal, yellow, blind eye.

We have another appointment with Joel's surgeon on 8th December. it's just a check up. At our last check up, we were told that the dried, yellow blood in his eye would drain and we'd be able to see his iris but that hasn't happened. The eye is a yellow/green bruised colour now, which is fine, just a lot more noticeable that something is wrong beqcuase it is almost flourescent. It stands out a lot, and from a distance, when he doesn't have his prosthetic in.

All in all, I feel like we're over the worst of it. No more surgeries, the prosthetic is going great, he's happy and healthy. The only other thing that could possible happen is high pressure at his check up, but for now I think he is comfortable.