People With PFV and Other Eye Abnormalities

Our sweet girl was born on October 26, 2017 at 1:14PM. She was sassy, loud and very healthy, we named her Katia Zoe.  At around 4 months of age I started to notice that Katia’s right eye would not focus as well as her left eye. I know someone is always telling us to not compare to other kids, but you can’t help it when you have 3 other babies around her same age being able to focus both their eyes. I brought this up during her 4 month well child check and the pediatrician immediately referred us to Seattle Children’s and within less than a month we were seeing Dr. Baran. She gave us the diagnosis of PHPV or PFV and unilateral congenital cataract.  Of course, my husband and I had no idea what this meant. Dr. Baran went on to explain that we would try to gain as much vision as possible shooting for at least 20/200 and then the word legally blind was thrown at us… this was very overwhelming especially since the next step was surgery, on our perfect babe who wasn’t even a year old...

After discovering Arthur’s condition and existing cataract , the next step was to schedule his lensectomy. We discussed the process and unknowns before going in, which involved a lengthy appointment and dilated examination. I’ve never had a dilated exam to compare, but doing the process with a small month-old infant was probably easier than examining a toddler. The ophthalmologist had an exam table to lay him flat and swaddles to keep him contained. It still wasn’t easy and I ended up having to leave the room, tearing up, while my husband stayed with Arthur. I took everything the hardest with the loud baby cries—he wasn’t in pain—but the combination of postpartum hormones and hearing my little newborn cry just did me in. In fact, 6 months later, I still leave the room at each examination. Don’t be embarrassed if you need to, too. Calming down during an appointment after an examination After the examination we discussed the surgery details and met the retina speciali...