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, July 8, 2010

New results

We're back from hospital.

They had another look in his eye and said he has a large blood clot. Andrea (another surgeon) had a look first then went to get Dr Lam, the senior surgeon. While she was gone I gave Joel a quick feed and when she came back and had another look, she said there is more blood than 10 minutes before. It is from him laying down to feed. This explains when he hasn't slept anywhere except on my shoulder since the op, he had one sleep in his bassinette this morning but woke up screaming. The pressure when he lays down causes a lot of pain in his eye. Andrea said that if I can, keep sleeping with him on my shoulder on the couch. I'll do that for my little man.

We have to go back to the hospital on Monday at 11. They want to give the blood a chance to drain and by keeping him upright as much as possible I can help to do that, so they'll give him the weekend to clear that blood. Come on God, just do this for him. Clear that clot so that he doesn't have to have another operation on Monday!!

I aksed Andrea "Really, what the point of all these operations? What's the reality of the situation, what chance does he have of ever seeing?" and she told me that he basically has no chance of ever getting any useable vision from that eye, that the surgeries are just to try to see what they can do but chances are really slim. She said the most likely outcome is that he will have a painted shell over his eye that looks just like his good eye because his PHPV eye will never look totally normal and even though the size difference isn't really noticable now, that in a few years time it will be and that the fact that the eye won't grow will cause him some pain because the rest of his face will be trying to grow and that cosmetically it will be "unacceptable". She said that if the eye continues to not respond to surgeries they may remove it.

I don't know, I know I should feel upset that they say he's never going to be able to see, that they might remove his eye. I feel like I should be falling in a heap but I just don't feel like that. I still believe there is healing there for him and that worse case, yeah he does have the eye removed and wears a false eye or a painted shell over his eye, well then that's just how it has to be. It's kind of a relief to know that there is a chance of him looking normal, even if he can't see.

Rich hasn't seen him without his surgical patch on (we had to leave the hard sheild on to stop him from rubbing his eye and the stitches) so today when I got home from hospital, he cried for him. He took one look at him and cried. I told my dad about the outcome from the surgeons and he cried, my mum cried, it's hard on everyone who loves and cares for Joel.

What I really do struggle with is the purpose in all of this. Why our family? Why my baby boy? We've seen, first hand, God's healing. I know that He heals so why has he chosen to ignore my prayers for my baby boy? I want to know His purpose. I want to know why we are missing out.

So for now, I'll keep praying for him, for this blood to clear so there's no more surgey and if you, readers, could do the same whether you believe or not, my little man would appreciate your prayers.


  1. Aww honey. the biggest hugs i reserve for you today.

    My eye stopped growing. No pain nothing. It will be ok. xxxxxx

  2. Keep praying Tracie, we are all praying right along with you. God is the god of miracles and he is capable of such amazing things.
    I am so sorry you guys have to go through this - especially your little man.
    Remember I am only a phone call away if you need anything xx

  3. Oh Tracie I am so sorry to hear that :( I hope Rich can take some shifts sleeping with him so you can get some rest too? Have you got a baby carrier you can put him in on you to give your arms a rest? Would he sleep in a pram with the back up so he is sitting to give you a break? Do you have a pram like that? I've seen your one but only with the bassinette on it I wasn't sure if it had another attachment so bub can sit upright in it?

    I have one of those rocking chairs that recline with the foot rocker, that you get from the baby shops if that will help at all you are more than welcome to use it? Well he (and you) are definitely in my thoughts and i will keep hoping for you that he doesn't have to have any more surgery.

    All I can say about why you, why your family is, cos little Joel needed you, you were chosen cos you were strong enough to look after him, because you would love him and care for him and provide for him everything he needs to get through this, cos no one could look after Joel better than you can.

    You know I am always here for you and thinking of you!


  4. Tracie, Rich, Annalise and Joel,
    You are all in our prayers. I have to agree with Mel - Joel needed you and you ARE strong enough to look after him. One day in years to come, this will all make sense.

    Sending lots and lots of love to you all... I feel really sad that we are not there to help you guys, even just to cook, clean or something.... you are very lucky for the ladies from the church.