PHPV – A Parent’s Story

Emilie-editedMy daughter Emilie is 9yrs old now and lost her eye due to a congenital cataract called PHPV Cataract, the website explains it best when she was a little over a year old.

She was born 11 weeks premature and when they performed a routine eye exam to check for retina detachement from oxygen use the Ophthalmologist discovered the cataract in her right eye. After getting a second opinion from the hospitals head Ophthalmologist it was confirmed. We were told that in the past vision loss was garanteed but they had an operation that could be performed that would give her “some” vision though never as good as a healthy eye. We decided to go ahead with the surgery but unfortunately it was unsuccessful and she had to go thru a few more surgeries due to complications including retina detachment.

Finally the eye was no longer salvagable. We first tried placing a prosthetic on top of her affected eye when she was a few weeks shy of 1yr old. But her eye was so sensitive that it was unbearable for her to wear so nearly two months later in November almost a year to the day of her first surgery they removed her eye. We were terrified of how she would recover from having it removed but she did SUPERB. In January she received her new prosthetic eye. I was terrified of what it would look like especially since her left I had developed a condition called Strabismus and was not set right in the middle, instead if she wanted to look at something further away she would turn her head to the left and the left eye would turn inward.

This made making the eyes look even that much more difficult, but my husband suggested to the ocularist to set the prosthetic slightly off, closer to the bridge of her nose and it worked. Most people thought it was the eye with Strabismus that was artificial. She did have surgery to fix the Strabismus when she was 5yrs old and though we were extremely nervous about it since this was the only eye she saw out of the surgery went well and we’ve not had to do anymore operations since then.

Since Emilie lost her eye at such a young age adapting to the loss was much easier for her. Dept perception has never been difficult for her and although she was uncomfortable when she was younger to “team” sports such as soccer because she does have a “blind spot” she seems to be adapting well now.

She has struggled with infections but since we have it cleaned every 3 months now instead of 6 they rarely happen now. When she gets a cold she does have to clean it more often and of course dry air especially in the winter make it a little uncomfortable so she carries eye drops with her to help with that.

We’re so lucky that so far she’s never been teased about her eye. We live in a small community so everyone who knows her has always known she has a prosthetic. When she meets new children they’ll almost instantly ask her what happened to her eye but only out of curiosity.

Speaking as a parent of a child who lost an eye I wish I would have been able to meet more parents in the same situation and for my daugther to meet children with a prosthetic eye as well. I’ve only spoken to one parent from another province in the past 9 yrs. We’ve always been open and honnest with our daughter about her eye and have always informed friend’s parents and new teachers about her condition.

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