Ryan’s Glow Story

Diagnosis: Coloboma

Krista gave birth to her fifth child, Ryan, in May of 2018.   Ryan was born full term and was a very healthy baby but at three months of age, Krista started to worry that Ryan may have an issue with his vision.

Around August of 2018, Krista started to notice that Ryan’s right eye would drift outward.  This drift would only happen on occasion and Krista was the only person who noticed it. She knew that it was common for babies to have wandering eyes, but she believed in her heart that Ryan’s situation was different.  Concerned, she mentioned it to her pediatrician at his well visit. Ryan’s doctor reassured her that it was common and normal for babies at this age to still have wandering eyes while their muscles were developing. This reassurance calmed her concerns for a little while.

Over the next few months though, Krista noticed Ryan’s right eye drifting more often.  She decided to capture this misalignment in photos. It became easier and easier to capture the drift as Ryan was exhibiting it more and more often.  Determined that this was not normal behavior, she brought her photos in with her to his next well visit. Ryan was now five months old. Her pediatrician looked at the photos and performed a red eye reflex exam in his office.  Again, she was told that all was fine.

This time, Krista was not comforted by the doctor’s words. 

She knew there was more going on with her son. Krista left that visit and scheduled an appointment with a pediatric ophthalmologist. She was determined to find some answers. At first this doctor also told Krista it was likely she had nothing to worry about but once he dilated Ryan’s eyes and gave him a thorough exam, Krista’s concerns became a reality.  The ophthalmologist discovered Ryan had a very rare genetic condition and he was diagnosed with bilateral optic nerve coloboma.

Coloboma is a rare genetic abnormality where tissue is missing in one or several parts of the eye.  When the coloboma affects the optic nerve, as in Ryan’s case, vision loss will occur in specific parts of the visual field.

Ryan’s condition had already damaged the vision in both of his eyes but the deterioration in his right was is much more significant than his left.  As a result, his brain had turned off signals to his right eye. This is what was causing the unused eye to drift. In order to try to preserve and strengthen the remaining vision in his right eye, Ryan has been undergoing patching therapy.   For four hours a day, every day, Ryan patches his left eye forcing his brain to accept input from his right eye. Ryan has been doing this therapy for nearly two months.

Now, Ryan is thriving and learning and growing more every day. 

He received his first pair of glasses last month to correct astigmatism and nearsightedness in his right eye and also to protect his stronger left eye which, if injured, could leave him blind. 

We think he is just the cutest in his new specs! 

Ryan is also enrolled in Physical Therapy, Occupational Therapy, and Developmental Therapy and these all help give Ryan extra attention on related things he struggles with- like sitting up and becoming comfortable in positions in which he might otherwise feel a bit vulnerable. They’ve already seen huge strides since starting therapy because Ryan is starting to sit up on his own for short bursts of time and he’s also working on exploring his toys and manipulating them in ways he never did before! Both are things that he hadn’t expressed any interest in before starting therapy. Krista’s family is so thankful to be building a team and helping Ryan be the best he can be. 

Through all of the research Krista has done on Coloboma, she discovered that often children with this condition will present with “the Glow” (known as leukokoria) in the pupil of their eye with flash photography. Krista looked back at the photos she took of Ryan trying to capture his drift.  She was shocked to see that “the Glow” was present in these photos. You can see one of these photos on the right-hand side of this post. She simply did not know that this was a sign of his condition. 

Krista wishes that she was aware of “the Glow” but is very glad that she listened to her mother’s instinct and fought to find answers for her son.  She is determined to help spread awareness of “the Glow” so that other parents will have tools other than their own intuition to guide their children to the care they need.