Has anyone else's baby been diagnosed with Persistent Hyperplastic Primary Vitreous PHPV??

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Angelxone2011 - posted on 07/15/2016

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Yes. My twins have them both eye they are now 5 months .At first we went 2 optha and their findings are stage 3-4 ROP and it terrified me so much that i cried while the optha explaining to us. And it said they need a surgery as soon as possible but no surgery has been successful. I prayed everyday every minute every second to our Almighty Lord just to heal them. I also ask God that im ready to surrender my life to Him just to heal my beautiful girls.. Then the dr. Req. For ultrasound for ROP but the findings are PHPV so we went another optha to have 2nd opinion about my twins. So her findings thru here lenses thingy and something like a helmet with a glass thingy that she use to see through the eyes. Her findings are my 1st twins had a genital catarac, i was so relief to hear that so meaning my baby will have a chance to see and sad to hear my 2nd baby had an ROP
but she didnt saw the findings of the ultrasound.. But then when we gave the result of the ultrasound the dr was so depress because phpv surgery also had a little chance to let my baby able to see.. So i was soo depress, because i dont want to have my twins kind of life that they are facing today.. So all we can do is do a surgery . no matter what happened .. But can any one give us some advice about my situation?

I dont know if this is phpv , catarac or rop all i can say is that my 1st baby right eye her eye wont dilate when putting astropine, her pupil was covered by her iris, left side inside of her pupil i could see white and her pupil was dilated everyday. My 2nd baby i could see something inside here pupil white color like my 1st baby twin but hers was small and also white

Mona - posted on 01/23/2015

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Yes, my son was diagnosed a couple of days after his birth. We were advised against any surgery due to his seeing eye having to be patched for a long period of time. We were told that there hadn't been many kids go thru the surgery and none had seen positive results for the surgery. He is now approaching his 18th birthday and he does very well in school and in home life. His center of vision is different than ours, he has to look over top of his nose to look at something. So it appears he is looking at something other than what he is really looking at.

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