Hi again, For Little Eye’s readers!
In case you missed my first post, I’m Kyla from Homemade Hometown— mom to Arthur, who was born with unilateral PHPV/PFV microphthalmia.
After discovering Arthur’s condition and existing cataract, the next step was to schedule his lensectomy to remove his cataract. We discussed the surgery process and possible unknowns before going in, which involved a lengthy appointment and dilated examination.
I’ve never had a dilated exam to compare, but doing one with a small month-old infant was probably easier than examining a toddler. The ophthalmologist had an exam table and swaddles to keep him contained. It still wasn’t easy and I ended up having to leave the room while tearing up and my husband stayed with Arthur. I took it pretty hard 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.
We never had previous experience with surgery scheduling, and the whole process struck us by surprise. I ended up calling the office to check on any movement on a weekly basis. The month of waiting for surgery took me back to my time during late-pregnancy—pacing around and nesting, making sure every little detail was as prepared as possible. Once we finally had a date confirmed (it took long to coordinate between our ophthalmologist and retina specialist) we found out that it’s standard with surgery scheduling to not know the operating time until the day before surgery. The youngest babies usually are operated on first in the morning. We didn’t get in until mid-day.
After the examination we discussed the surgery details and met the retina specialist that our ophthalmologist wanted to keep on call through the duration of the surgery. With such a large and dense cataract, the doctor couldn’t get any look at the retina. Since she didn’t know exactly what she was dealing with until she could get inside the eye, she made sure to explain the chance of pulling in the retina specialist to tend to any abnormalities such as a detached retina. We also discussed the common conditions of PHPV/PFV in that the stalk in the eye may still be fully formed and need to be removed.
There was a lot of unknown, but the one thing we did know was that surgery was imperative between 6 and 8 weeks of age in order to create the brain connection to the eye to establish vision. We trusted our ophthalmologist, did extensive research, and planned for tentative surgery.
Surgery preparation involved bathing the night before and hours of fasting—which is tough for a little baby trying to pack on the pounds and earn his Michelin Man rolls. The scheduler asked us to arrive two hours earlier than the scheduled operation time and we were dreading the idea of waking and fussing with a fasting newborn. It was only a small fraction of what we weren’t looking forward to, though.
Despite all of the preparations, conversations, and appointments, nothing makes you feel ready to send your child off to surgery. There was a long debate over if it was worth doing anything at all—we didn’t want to put him under anesthesia and cause him any pain. After a few long-winded, late-night conversations, we made the individual choice that we felt we needed to give Arthur every chance we could to establish his vision. We were going to fight for his sight.
Hi Kyla, i was greatful to read about your journey. My son, whos name is also Arthur, was born with unilateral PHPV/PFV and microphthalmia as well. Lots of love from Germany, Fiona
Hi Fiona! What a coincidence– our Arthur is growing and thriving and I hope yours is as well! If you’d like to connect further, you can always find me on Instagram too! https://www.instagram.com/kylamariecharles