I first noticed that Maria’s eyes were different when she was five weeks old. She was starting to open her eyes a little more frequently and when we were in a bright room her pupil had become small enough for me to see that it had an irregular shape and was off center.
It may sound silly, but it had never occurred to me that an eye might not form properly or could look different.
I took her to the doctor who told me it was probably nothing to worry about but to get a second opinion from an optometrist. The optometrist referred us to an ophthalmologist, but insisted we come in once a month for regular checks while we waited. I didn’t realize it at the time, but they were monitoring her for glaucoma.
By the time we were finally able to see the ophthalmologist – seven long months later – Maria’s pressures had risen. She was diagnosed with Axenfeld-Rieger Syndrome, a rare genetic condition which we discovered had happened spontaneously and was not inherited, and a couple weeks later she was also diagnosed with glaucoma.
It makes me feel sick to think that if I hadn’t noticed her irregular pupil, or if my concerns about her irregular pupil had been dismissed, that we might not have caught her glaucoma when we did.
Until recently, her pressures have been maintained with eye drops. These have been extremely difficult to give to an infant, and recently she has learned how to squeeze them out entirely. It’s likely we are now going to need to give her more medication and /or that surgery may be on the horizon.
As a mother, this is a frightening journey. I’m hopeful for research into better treatments to help manage childhood glaucoma.
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Maria