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 4, 2010

Can't believe we forgot to take it out

Rich has just left for church and I can't believe this - we forgot to take Joel's lens out! I put him to bed, then as I was saying good bye to Rich I realised his lens was still in. Rich will be home around 10pm so this is one of the first nights I actually wish Joel would wake up. We can leave it in overnight of we really have to but there's no point, he's not looking around or anything plus it will irritate his eye and it needs to be in the conditioning solution for at least 4 hours between coming out and going in.

If he wakes up in the meantime I will have a go at getting it out on my own. For the first time. I am going to have to get used to it because Rich is going to Melbourne for 4 days in a few weeks and I'll be home on my own so it's probably good if I get some practice in now.

I have heard from PMH (the hospital). We have another appointment on the 17th June. Please pray for us that he hasn't developed glaucoma and everything is fine with his eye.


  1. Hi Tracie, just watched your video on You Tube, Wow that is great. You guys must be thrilled. We have the new lens for William and now that he's been patched for 5 weeks we really think he's come along quite well too. But since he's only 13 weeks we haven't seen him reach out and grab anything but he does look at his hands and smile at us when we come near. Anyway just wanted to say Well done Joel!


  2. Thanks Kirstie, it's amazing and he's done it once again since then so I'm extra happy for him. All the best to your little guy xx

  3. Hi Tracie, have you had any luck in getting the contact in by yourself. I don't know how I did it yesterday but I did - poor William was way overtired as my husband and I tried and tried to get it in and we couldn't do it so Jason took Lexie to kindy and for some reason I just knew I had to do it on my own as I couldn't wait any longer as he was getting so tired! He was crying a lot but I managed to get it in there! Hard work tho. Now I'm dreading the next time we have to do it in 6 days time!!

  4. Tracie, have a question for you. We just went to see our follow up Eye Dr today in regards to William to see how he is going and he said that because William has Microphthalmia and his natural lens was removed he won't be able to have another lens inserted when he comes to an age because of his small eye and not enough matter in the eye for a new lens to be attached to it. Tho in saying that he isn't the Dr that did the surgery so I need to speak to the other surgeon to see if he has anything left to attach a new lens too. Were you told the same thing that Joel will have to wear a contact for the rest of his life? We were also told that William will need to wear bifocals have you been told this as well. Our follow up Dr isn't as easy to talk to as the surgeon that did the Op so its really hard to get anything out of him, he is very old school!!

  5. Hope all is well Tracie ((hugs))

  6. Kirstie, I did reply to your other post about getting the lens in on my own but for some reason it hasn't come up. What I said was that I do find it easier, as you said, when I just know it has to be done. If I muck around and try to be too gentle about it it seems to take longer!

    As for not being able to put an IOL in a micro eye, to be honest I have never heard of that. I would assume that the surgery to implant an IOL would be the same as on any other eye. What about kids who naturally have smaller eyes? Would they be excluded from this surgery just because of the size of their eye. I am wondering if you were told that because perhaps the IOL is in a fairly standard size and may be too large for a mocro eye that is considered "extreme". I know there are varying levels of micropthalmia. We were told that Joel would be able to have an IOL implant when he was around 6 years of age, presuming all went well with his contact and he gained some usuable vision.

  7. Kirstie I saw your post on the eye care forum and like the doc says on there - never lose hope coz we don't know what advances are around the corner.