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

Wednesday, May 12, 2010

Emotional Affect on Parents

One thing I haven't really covered is the feelings and emotions that go along with the disgnosis of PHPV. They are so wide and varied but from talking to other parents of PHPV kids - we all feel them. We all seem to go through the same grief process and can identify with and understand without judgement how it feels to know your child has PHPV.

At first, all I could do was cry. I would be feeding my little boy and I'd look down at him and I'd cry. I'd be changing his nappy and I'd cry. I'd be laying in bed at night thinking about him and I'd cry. For about 2 weeks all I did was cry. I didn't want to go out. I didn't want to talk to anyone. I just wanted to stay home and cry.

I felt sad for him. I kept asking "why us?". I felt embarassed there was something wrong with him. I imagined his future, him being teased for having a small eye or not being able to drive or play sports. I felt angry. I felt helpless and useless. I felt guilty. Oh that mothers guilt is a killer. I kept thinking it was something I did wrong when I was pregnant. Something in my genes. I was so SO angry when I saw a pregnant woman smoking. I was so mad when I would hear that a woman who drank through her pregnancy had a healthy baby who could see out of both eyes. I did everything right during my pregnancy, EVERYTHING. I did it all by the book and yet here I was with a baby boy who could only half see the world. It made me really mad and it still does when I see a pregnant woman smoking or drinking or eating any of the foods we're not "supposed" to eat.

I found a group of other parents of kids with PHPV and they all told me it gets easier in time. And it has. Now, I don't feel guilty or sad for him. I never ever forget about his eye, it's always there in the back of my mind, but it's just become part of who he is now and who is is, is a funny, handsome, gorgeous, smily chatty little boy who brings happiness and light to everyone who meets him.

Next post will be about his surgery, the ongoing care, contact lens and patching.


  1. I just wanted to let you know that I am following you and I just wanted to thank you for sharing. my son Austin was diagnosed with PHPV at birth and I was curious as to what is ahead for us. i feel your pain and weakness and heartache about all of this. i understand and when i read ur blogs its like it is me and the way i am thinking! my son just had the cataract surgery and now we are waiting for his next appointment! You have an adorable little boy! Tell me where do we get our strength to be strong for our lil guys?

  2. Oh babigurl, it's hard but I know I get my strength from God and from that "mother" inside us all. Never ever lose hope that Austin will grow up to be an awesome man, an amazing and strong man with the world at his feet. Nothing will stop him! The surgery is the easy part, I really hope it went smoothly for your little man. The next few weeks are all a learning phase, don't try to be perfect at everything straight away, take it easy on yourself and just LOVE LOVE LOVE that baby boy of yours! They are who they are and always will be, regardless of the challenges they face. If I can be of ANY help or offer any sort of advice or anything, please just ask! I truly wish you all the best on the next part of your journey with Austin, stay strong and go easy on yourself xxxx

  3. My son Avery has PHPV in his right eye. He doesn't have any cataracts and is my little angel. One eye is smaller than the other and he has about 10-20% vision in his eye. He was diagoned on 23/07/2010. I think i am still in denial. The doctor did not ask me to perform any surgery or give me any medication. He only asked i return for a check up in 6 months ( December 2010) Avery's is an ANGEL but everytime i look at him i feel so guilty and sad ... afraid he will be teased inschool and miss out on somethings in life.
    I know God has his reasons but why? Thank you for your blog it has helped me come to some terms about Avery's condition. Perhaps God really does hear our prayers.

  4. ///Never ever lose hope that Austin will grow up to be an awesome man, an amazing and strong man with the world at his feet. Nothing will stop him//

    I would like to paste it thousand times and replace the name with my son's.

    Thanks for the words.

    " My son will prove him " I hope.