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, June 30, 2010

There has to be a link

I've just been reading another blog about a lady with a baby with PHPV. Her boy also has a cleft lip. My mum had a cleft lip and my brother had a cleft lip and palate. This isn't the first time I have seen the cleft lip/palate link on a PHPV board, blog or forum. There has be be more to it that just a coincidence.

If the chances of getting PHPV are "random" and 1 in a million and the chances of a cleft lip, alhough proven to be genetic, are also very small, how it is possible that there are so many kids born with both? Or if they don't have both, as in Joel's case, there is a family link somewhere down the line? I don't have a cleft lip or palate, neither does my other brother, but that gene is obviously in our makeup, there just has to be more to it than coincidence.

I wish there was more information. Not that it will help, I know that it's not going to change anything, my curious mind needs to know...

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