PHPV – A Parent’s Story
My daughter Emilie is 9yrs old now and lost her eye due to a congenital cataract called PHPV Cataract, the website explains it best http://www.pgcfa.org/kb/entry/
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.
Hi there, my 5 month old daughter was born with phpv in her right eye, it is also smaller. She wears a contact along with glasses and we patch 4-5 hours daily to god-willing restore her vision. I too desperately want to meet local people with my daughters condition. Are you by chance from Toronto?
Hi Jenn,
I believe Daphne Archibald is the ocularist who works with most of the children with Microphthalmia in Toronto. While I understand from your email that your daughter does not require this service it would be a good idea to call her as she would know many children with PHPV and may introduce you to their parents. You can find her details here. I hope this helps,
Kind regards
Paul Geelen, Ocularist
Hi jenn! Our little one has PHPV and is now 21 months old! She wears a contact and patches 5 hours a day. We are also in Toronto. Feel free to email me at ounceofluck@gmail.com and we can chat! Good Luck! Check out my blog too. I don’t keep it up as much as I should but there is a whole group of Eyemoms blogging who are great for support!
My son, grant, is 2 and he had cataract surgery at 13 weeks. He wears a contact and we try to patch 4 hours a day. He also has microphthalmia in that eye. He started not seeing anything and now when patched he can get around. He an see far put does well up close. He loves using the iPad when patched and does it all by himself.
My son was diagnosed at 4 months old with PHPV.He has micropthalmia also.
We were told by consultant peadiatric opthalmologist that it was beyond salvageable and did not reccommend surgeries or patching this is due to potential little success and the trauma would be a waste of time.
I worry about the future and am learning more as I come across forums etc.
The only thing reccommended is a cosmetic schleral shell contact lens.
Has anyone had any success with a contact lens?
We live in the UK. I had never heard of this condition until now and yet to meet someone with it.I know of no one else and would like to see photos of adults with it and those with copntact lens
Hi everyone,
I was born with PHPV in the left eye, I am now 26 years old and have virtually no vision in that eye. My mother patched my eye for 5-6 hours daily and used the contact lenses, but as any infant would do, I liked to rub them out, so that was challenging. As an adult with PHPV, I find that some doctors say theres not much that can be done at this point, that you have to develop the brain and eye connections before the age of 12. I want to know what other doctors suggest for restoring some vision in the one eye? My next appointment, they want to try a contact lens in the left eye (PHPV eye) and see if that helps any. When I was born with this condition not much research was established then. I advise all you with young ones, to seek as many opinions as possible. The one thing that I continue to want is the laziness of the eye corrected. My last surgery was about 9 years ago, and I woould like another one for personal reasons. They say once you cut the muscle so much, not much is left to continue to operate. I wish they would have known more when I was born with this condition, and perhaps they did all they could do. Always be your own advocate! best of luck!