Sunday, April 9, 2017 my son, Ethan, woke up with red, watery eyes and I thought maybe he had gotten something in them the night before when we were outside. The next morning he woke up and his left eye was gray. I rushed him to the pediatrician. The doctor called the only children’s eye doctor in town and got us an appointment for 6 months later. The pediatrician didn’t like that so he sent us to the ER, who sent us to an eye specialist. The specialist diagnosed Ethan with pink eye and treated him accordingly; we were to follow up three days later.
The follow up went fine, eyes looked better and we were told to keep the appointment with the children’s eye doctor in 6 months. Thankfully the eye specialist sent over Ethan’s records immediately to the children’s eye doctor after we left his office. The children’s eye doctor called before we had even left the parking lot and said they wanted to see Ethan right then.
So, we get to the children’s eye doctor, who runs all these tests, checks pressures a few ways, lots of nurses in and out of the room. We didn’t think anything of it; Ethan had pink eye and would be fine.
After we had been there for about an hour the doctor comes in and says “Your son has congenital bilateral glaucoma and will be having surgery next week at either Emory or Duke; whoever answers the phone first.” In complete shock we listened as he explained what congenital bilateral glaucoma was, how to treat it before and after surgery, and how our “lives were forever changed”.
Ethan’s pressures that day were 66 in the left eye, and 54 in the right. I will never forget April 12, 2017. We left that appointment with a laundry list of prescription eye drops, oral medications, and directions to Emory.
I remember having to create a spreadsheet for the medications so I would remember which one to give and what time. That first week he received 22 drops every day.
The following week we made the 4 hour drive to Atlanta and prepared to meet Ethan’s glaucoma specialist at Emory. We met her on a Monday and Ethan was scheduled for surgery at CHOA on Tuesday; he was 13 weeks old.
Ethan had a trabeculotomy on his left eye on April 18 (our oldest son’s 14th birthday), a trabeculotomy on his right eye on May 3 (our 9th wedding anniversary), and an Ahmed valve placed in left eye on June 8.
In between the surgeries we made weekly trips back and forth to Emory for pressure checks. It was an absolutely exhausting three months; physically, emotionally, financially.
At 10 months we went back to the local children’s eye doctor who told us Ethan would need patching and glasses. It’s funny now that I was so freaked out by him having glasses so early in life, now I can’t imagine him without them.
After the valve placement we made trips to Emory every other week, then once a month, then once a quarter. The trips often required us to drive up in the morning, see the doctor for 20 minutes, and drive back that night.
Ethan didn’t always cooperate at the appointments, so several trips seemed to be wasted trips due to no pressure readings; so enter the examination under anesthesia (EUA) in to our eye care routine.
Ethan was put under anesthesia 5 times for exams from Dec 2017-Jan 2020. He has been on a single prescription eye drop since Oct 2017 and it seems to be working, as his pressures have remained normal since then. He is still light sensitive, so we buy the darkest prescription eye glasses and he wears hats during the summer.
We now rotate between the local children’s eye doctor and Emory. Ethan is finally allowing the techs to get pressure readings, and is doing very well at his eye appointments…he’s becoming a real pro. Ethan is now 4. He is happy, healthy, and all boy!