What is PHPV?

PHPV stands for Persistent Hyperplastic Primary Vitreous. Does that help?

PHPV is a birth defect of the eye. When the eye is developing, it has blood vessels that come from the back of the eye that supply blood to the developing lens. At a certain point, the vessel is supposed to shrivel up and die, it has done its work and is no longer needed.
With PHPV, the vessel does not shrivel up, it keeps supplying blood to the eye, causing scarring in the vitreous and the back of the lens capsule. This scarring is a cataract. PHPV often causes the eye to be smaller than normal, microphthalmia, it also makes it more prone to elevated pressure, glaucoma, as well as other complications.

Five yrs ago, I had never heard of PHPV. Since then, I have learned more about it, and eyes, than I ever wanted to know.
Why would I care to learn about congenital cataracts?? My 5yo son had PHPV in his right eye. Josh's PHPV eye is microphthalmic, and he has glaucoma.

Josh had his 1st of 6 surgeries when he was only 4 weeks old. Cataract surgery in infants is different than adults, in that they are under general anethesia and they do not implant artificial lenses into infant eyes. So, mom had to learn how to change a contact lens. The 1st time I changed it, Josh was about 2 months old. I'm not sure who cried more, him or me. Now, it is very easy. But we went through a lot of difficult times to get to this point.
Another problem with PHPV is amblyopia, lazy eye. The brain tries to ignore the eye with blurry vision in children. So, even with surgery to remove the cataract, and a contact lens to take the place of the natural lens, he would still not develope vision unless we did something to help him. This "something" is daily patching of the unaffected eye. What a challenge that has been at times. Currently, we are at a peaceful season with the patching. But we are ready to be firm if he needs us to be again. It would be cruel to have put our little son through so many surgeries, and then not enforce the patching therapy.

Our biggest concern right now is the eye pressure. Drops to lower the pressure do not always work long term in young children. Josh is seen frequently to have his pressure checked. What a brave little guy he is. Elevated eye pressure can cause a lot of problems, which could cause him to lose his vision. So we fight to keep his eye as healthy as possible and his pressure under control.