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 18, 2010

When he's asleep

I go in and check on him. I sit there and just watch him, watch his little chest rise and fall, watch his lips form smiles and frowns and his beautiful little eyes squint and relax.

He has no idea now, and probably never will, of the weight I feel on me with some of the decisions I make for him . I am so blessed and so honoured to be his mum. He is such a special little man. God has a huge plan for his life, I just know it. We are so amazingly lucky to have him. He is just such a lovely, sweet, affectionate and gorgeous little boy. Thank you God for giving him to us.


  1. Awwww I shouldn't read your blog when I am feeling emotional you always make me cry!

    I love watching Tiffany sleep, I love it when she falls asleep in my arms. xxx

  2. My heart goes out to you. I had no one to talk with when going through this with my daughter.

    My girl is now 14! She had PHPV. Cataract removed at age 8 weeks. 2 separate eye muscle surgeries. 9 years of patching 6 hours per day.

    We tried contacts around age 15 mos. Due to her mishapened eye, the contacts would pop out. We lost 2. $500 each. We decided to stick with glasses. Reagan has done great. Yes, the patching was awful. The eye surgeries were awful.

    However, I patched her everyday. Birthdays, holidays. She says she doesn't remember any of it. I would patch her after school so kids would not make fun of her.

    Those were hard days. She wants contacts now and the doctor says no. We are going for a second opinion on Friday and my stomach is in knots.

    I know she wants the contacts. But if they are not a good idea...I am sickened to think she could get contacts and for some reason lose what vision I fought so hard for her to have.

    Good luck to you and that precious baby boy!

    South Carolina

  3. Thank you so much for your comment Donna. Thank you for understanding and being so honest about patching. We are only in the early days here and I often wonder how we are going to cope doing this for another 8 years until he can be assessed for an IOL. He is starting to panic again with the patch on so his vision is getting worse, so on a smaller scale I can understand how you must be feeling with the worry about your daughter losing what vision she has. I really wish you all the best for her appointment on Friday, I think it's great you're getting a second opinion for her and I really hope that they can help to give her a contact lens if it's what she wants. All the best xx Tracie