Myles’ Glow Story

Diagnosis: Optic Nerve Coloboma

Susan and her husband were thrilled when they discovered they were expecting again.  Susan says she had some concerns as she was considered an older mother at 44 and she is also diabetic.  Her nerves were calmed during the course of her pregnancy, however, as many tests were performed and all came back completely normal.  And when little Myles was finally born he passed almost all of the screening tests.  There was a slight concern about his hearing at first, but over the first few weeks this, too, was dismissed.  Susan brought little Myles home and they started their new life together.

When Myles was about three months old, Susan says she was entertaining him while he sat in his high chair singing songs and dancing in front of him.  She remembers while she was moving that she saw a flash in his eye.  It was very quick and at first, she thought she imagined it.  However it happened again and again, but only when the light hit it at a certain angle.  

Susan immediately sensed there was something causing this flash, or Glow.  She had experience with “the Glow” as she worked with a woman whose child was diagnosed with Coats’ Disease after discovering his Glow in flash photos.  Susan began taking photos and was able to capture the Glow in Myles’ eye as well.

Susan took Myles to visit his pediatrician right away.  She explained her concerns and the doctor examined Myles’ red reflex.  At first the pediatrician was not able to find anything of concern.  Susan persisted.  She explained that it would only be visible at a certain angle.  Finally after 7 or 8 tries the pediatrician saw the flash that Susan described.  They were sent to see a pediatric ophthalmologist for further examination.

Once at the ophthalmologist, Myles’ eyes were dilated and a thorough exam was performed.  Susan says she could feel the concern build in the doctor very quickly into the exam.  He saw what Susan noticed and asked “who found this?!”  She knew by his demeanor that is worry it was Retinoblastoma, cancer of the eye.  They were told that Myles needed to be seen by a retina specialist immediately. 

They were led to the opposite side of the hospital where they were met by a team of doctors.  Many tests were done to determine exactly what was causing Myles’ Glow.  The day was long but the team was very thorough.  Finally, it was determined that Myles did not have Retinoblastoma.  He was diagnosed with an optic nerve coloboma.

Coloboma is an eye abnormality that occurs during fetal development.  Certain pieces of tissue in the structures that form the eye do not develop properly.  In Myles’ case, the abnormality developed in the optic nerve.  During the exams that followed, it was explained to Susan that Myles only has peripheral vision in his right eye.  This vision loss was present at birth and is permanent, as there is no treatment that will improve his sight.

Myles has not let his vision loss stop him in any way.  Susan says they are very careful to protect his fully functioning eye.  There are concerns about a possible retinal tear or detachment in the eye with the coloboma, so Myles will have to limit contact sports in the future. Myles is seen by his pediatric ophthalmologist as well as retinal specialist every year to make sure all is stable.  

Susan is frustrated that Myles condition was not discovered during all the testing that was done in utero and soon after Myles’ birth.  She is very grateful that she was aware of the Glow and was able to get Myles the care he needed.  She is determined to share their story in the hopes that many other families will become educated about the Glow and the conditions it can indicate.  She hopes by doing so other children will be given the care they need on a more timely basis.