THROUGH JASPER'S EYES

NOTICING

Some babies go home from the hospital with big, round, open eyes, but not my babies. I remember being surprised the first time I saw a picture of my friend's baby on the way home from the hospital with the biggest blue eyes I’d ever seen. My babies have all had small, squinty eyes that start to unfurl later in their first weeks of life.

So I wasn’t concerned when our third child’s right eye initially didn’t open. But over the first few weeks after his birth his left eye began opening and looking around, taking us in. When you’re in the postpartum haze, your focus zeros in completely on the new life you’re caring for, and I obsess over every detail. I began to be concerned that something was wrong with his right eye because it was barely opening.

I started doing some of my own testing on his eyes. I didn’t know a lot, but I knew that his pupils should respond to light, so I started using my phone flashlight to run some tests. His left pupil dilated and looked fine. But his right pupil did not dilate, and it looked reflective, like an animal on camera at night. It also seemed smaller than his other eye. I thought I was going crazy, but I talked to our doctor about my concerns at his one month appointment.

Jasper’s pediatrician took me seriously and pulled other doctors in to look at his eye. She told me that something was definitely wrong. Worst case scenario, it was cancer. I burst into tears. She held my hand and told me they would help us find answers.

SEEING CLEARLY

By the end of the day, she had gotten us an appointment with a specialist in Bend, and we learned that Jasper had Persistent Fetal Vasculature. PFV is a rare congenital anomaly which occurs when blood vessels within the developing eye fail to regress as they normally would in-utero after the eye is fully developed. These blood vessels essentially tethered the back of his eye to the front of his eye, and stunted it’s growth. His right eye is 5 mm smaller in diameter than his left. Due to these factors, he is completely blind in his right eye.

What followed was a few weeks of shock, grieving for his eyesight, but also thankfulness that he still could see and that it wasn’t cancer. We shared the news with our loved ones and strangers who asked why he was squinting at them.

I really began to notice how hard it is to simply ‘sit’ in bad news with others. As humans we long for a bright side, a silver lining. Every conversation we had ended with others saying “at least it’s not cancer!” “At least he can see out of one eye!” “He won’t know any different!”. And while these things were true, and while I also said them to comfort myself and others, it doesn’t take away the fact that we have a harder road ahead for Jasper than if he had been born with healthy eyes.

A few months later we drove to Portland to meet with a surgeon to see if removing the blood vessels in his eye could allow him to see. This was also a whirlwind as we learned more about how the eyes function, analyzed pros and cons of surgery, and eventually were told that his eye was just not developed enough to be able to see even with surgery. 

PHASE TWO

Accepting that he will never see out of his right eye, there are two main goals we are working towards for him now. Protecting his good eye with glasses, and getting a conformer made for his bad eye. The conformer is like a hard contact that will put pressure on his right eye socket and make sure that his bone structure grows evenly on his left and right side of his face. It will also prepare his socket for a prosthetic eye covering so he can look more normal when he gets older.

We then had to prepare him for the procedure that would allow a conformer to be made. We originally had it scheduled for November 2024, but we all got very sick and it was cancelled. It was rescheduled in Portland for February 6, 2025. We quarantined for two weeks to keep him healthy, and even then we barely made it. We had our entire community praying for us, and we needed every prayer! He got a cold right at the beginning of quarantine, so for two weeks we gave him steamy baths, saline nasal spray, naps, and breast fed him around the clock. We were stressed to say the least. By the time we made it to Portland he was still a little stuffy, but we were able to meet with the anesthesiologist and let her know he had never had a fever, and that we had been quarantined for two weeks. She thankfully felt comfortable enough to do the procedure.

There was a lot that happened during this procedure, but nothing invasive. They had a large team of people attending to him: the anesthesiologist and her assistant, an Ophthalmologist and nurses, and a prosthetics expert called an Ocularist. They took ultrasounds of both eyes, did eye exams, and took a mold of his right eye and eye socket so they could create an accurate conformer.

The procedure was only about an hour long. We were brought back once he began waking up. Our sweet boy was groggy and hungry because he couldn’t have anything after 2 am the night before. But he did a great job and everything went smoothly.

They confirmed for us that his left eye is in really good shape, and he can see perfectly out of it. They also confirmed that he definitely cannot see out of his right eye, but that it is currently attached and not causing him any pain or discomfort. We do not know how his eye will grow as he gets older. It’s possible it could detach or become painful and will need to be removed completely. We will cross that bridge if and when we get to it.

PROSTHETICS

The next morning after the procedure we were able to meet with our Ocularist from Maloney’s Ocular Prosthetics. We were treated with the utmost care and kindness as they answered a thousand questions for us. They were able to successfully insert the clear conformer they made for Jasper, and Jasper seemed comfortable with it for a while. We had to take it out the next morning to let his eye recover from all the prodding during the procedure.

We are now learning how to insert and take out this prosthetic for Jasper, and get him used to it. We will be mailed larger ones as needed, but we are not on a “fast track” expansion (like getting a larger size every two weeks to increase his bone size) as we got the good news that he’s not too far behind growth wise. We do still have to keep it in his eye as much as he can tolerate it.

In the upper left corner of the left photo you can see the mold that was made from the procedure. Maloney’s Ocularist made an initial mold during the procedure with the same material you get teeth molds made from at the dentist office (minus the flavoring!). The other eyes in that picture are examples of prosthetic eye coverings that we will move to in the future. For now, the middle picture is his conformer. It is made from a medical grade acrylic. The picture on the right is Jasper with it inserted. It opens his eye more and fills out his socket. We use a tiny suction cup tool to insert it under his eyelids but over his eye. Pray for us, this is quite the learning curve.

Jasper has a different journey than other kids his age, but we will continue to do everything we can to make it smooth for him, and hopefully it will be second nature to him as he grows.

Jasper is strong, happy, and sweet as can be. We love him with everything we have and he wins over everyone he meets with his charming smile and wink. Thank you to everyone for your thoughts, prayers, support, and presence in our lives during this time, we could not do this without you. 

Addie and Travis