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, May 13, 2010

The surgery

We got to the hospital early in the morning and everyone we dealt with was great. So understanding and gentle and patient (especially with me, every time they asked me a question I would cry). We met the Anethetist and Dr Lam and went through the procedure. He was having a vitrectomy (removal of some of the vitreous - white part - of his eye) and a lensectomy (removal of the lens). This would take away the scarring at the back and the cataract and membrane at the front. Without the lens, the light that goes into the eye is dispersed instead of focussed on the one spot it needs to go, the retina. Joel would never be able to see without the use of glasses or a contact lens to replace his natural lens.

Joel had to fast from 9am until his surgery at 1. This was harder for me that it was for him. All I wanted was that closeness, that bond with him. I wanted to put him on the breast and hold him and never let him go but I couldn't. I couldn't even hold him because every time I did, he would nuzzle down searching for milk. Rich had to hold him the whole time while I sat in a big red leather chair and watched. Finally the time came to hand him over, only one of us was allowed to go in so I took my baby in there. The nurse came up and asked "Is this Joel?" and again, I lost it. I told her yes, this is my baby Joel and she asked if I wanted to give him a kiss and he would see me in a few hours. I kissed him all over his little face and he smiled at me as they took him through the doors.

We went to get something to eat and waited for it to be over. After almost 3 hours we were sill waiting and I was convinced something was wrong, that they'd found something else wrong with his eye. He had already had an ultrasound of his eye - we had to restrain him while they put gel on his eyes and for 10 minutes ran the ultrasound machine over his little face - so we knew there was nothing else there but you just can't help thinking "what if". FINALLY the nurse called out "Joel's mum?" and I was allowed to see him.

He was in recovery, wrapped up in about 10 blankets with his black spiky mohawk sticking out the top. This time, I didn't cry. It was over and he was back with me and the surgery was done. I just held him while he started to wake up and look around for me. He had a big gauze patch over his eye with a plastic shield over that. He looked SO small. It took him about half an hour to recover from the GA and when he did, he was hungry! I fed him really slowly for a while then took him out to see his daddy. He was 8 weeks and 5 days old.


  1. Tracie, when I was reading, I couldn't hold my tears, it was like reviving every moment, every feeling, every fear. Yes, it is a process, and the pain decreases, but does not desapear, (yet). It is a healing wound, yes it is. I just know, we have a precious, beautiful, amazing, and PERFECT gifts. They are OK, and they will be, is more difficult for us (I guess). Keep posting! Naye.

  2. I will Naye. Stay strong and you are so right, they are perfect little gifts, our children xxx

  3. Aww, I was teary reading how you couldn't hold him while waiting because he would nuzzle for the breast & when you had to hand him over to the nurse. That must've been hard to let them take him away.

  4. Yeah it was :-( It was worth it when we got him back though. Chances are he will have more surgeries so it's just one of those things we'll have to get used to I suppose. I'm hoping it gets easier the more you do it.

    Oh yeah, big tip for other breastfeeding mums - take a pump with you lol. I forgot mine :-S

  5. Should I have to get my child operated?
    I cant bear a cut in his eye. How can my wife?
    It's mid night but i want to cry aloud.