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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

surgery decision

My baby is 5 months old and has phpv, at the end of the month he is getting a sceral shell put in.
My husband and I have been going crazy with making a decision if we should have surgery for him or not , due to having surgeons giving such low percentages of any kind of success.
If any families have had this surgery done and have any advice please let us know.

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Re: surgery decision

This is the same question we are struggling with. Surgery or no surgery. I need to ask more questions, and get a second opinion.

Re:surgery decision

Hello, my son was diagnosed at 4 months of age with PHPV and had surgery when he was 5 months old they did a cataract removal and lens replacement.

He is now 13 months old and has been walking for about 3 weeks now, but he falls A LOT! I was just wondering if it has anything to do with having bad vision in one eye and not quite having his depth perception down yet. Did anyone notice this with their child?

Re:surgery decision

I just saw your posting. My son has PHPV, however he did not have the surgery you mentioned. He is now 18 yrs old and was diagnosed as an infant. We went to 9 doctors to hear all opinions on his condition. Some felt with PHPV they must operate right away to take the "stalk" out, that is what they referred to it as. (It's actually a vessel that fails to shrink as the eye is developing & hardens and attaches from the optic nerve (in my son's case) and branches forward to the lens in the back of the eye). After consulting with doctors from all over, I decided to go with my gut instincts and not operate. I can now say I made the best decision for my son. His stalk is too involved in the optic nerve that removing it would have compromised his whole eye. Get many opinions from the specialists that have experience with the actual condition your child has. Ask how many cases they have treated & the outcome. Then go with your gut as a parent. Good Luck!

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