Glow of the Month: Coloboma

Posted on 2019-04-25

Know The Glow is dedicated to protecting the eyesight of children all over the world through advocacy and education.

We empower parents, family members, and teachers with knowledge about “the Glow” so that they can spot it in children’s eyes. Spread the word about “the Glow” so more children are  protected! Together we can work to ensure that no child goes needlessly blind by educating people about the dangers associated with “the Glow.”

As part of our ongoing “Glow of the Month” program, today we talk about Coloboma.

We will also highlight some of the brave members of the Know The Glow community who are thriving and not letting their Coloboma diagnoses slow them down. To learn more about past  “Glow of the Month” highlights, check out our articles about Retinoblastoma, Persistent Fetal Vasculature, and Norrie Disease.

Coloboma is a “gap” or a “cleft” in the tissue either around or inside the eye — it can appear as a cleft in the eyelid, as a “hole” in the retina, or even in the optic nerve. Coloboma can be in one or both eyes. When Coloboma affects the optic nerve, vision loss occurs.

Unfortunately, there is currently no treatment or surgery that can be done to correct Coloboma but there are actions that parents and children can take to preserve or strengthen vision in the affected eye or eyes.

For example, Ryan was diagnosed with bilateral optic nerve Coloboma. Because he lost much of the vision in right eye, his brain “shut off” accepting signals from that eye, causing his right eye to “roll.” Ryan is currently doing patching therapy to help strengthen his right eye.

Coloboma doesn’t always affect the vision of the eye. But when it does, it can cause serious vision issues. Diagnosed almost always at birth, children with Coloboma will often exhibit “the Glow,” a yellow-white reflection in a child’s pupil. Coloboma can also cause unusually-shaped irises like a “keyhole” iris.

Members of the Know The Glow community who have been diagnosed with Coloboma have discovered their diagnoses because of some of these symptoms.

Aubrey’s mom did not catch her Coloboma until the pediatrician did a red-eye reflex exam. But, when she looks back at photos taken of Aubrey from birth, she says that “the Glow” is obvious from a very young age. River’s parents noticed her Coloboma because of her key-hole shaped irises.  

Both River and Ryan are in occupational and physical therapy to help them grow and thrive, even with their limited vision. Aubrey is dealing with her diagnosis with new glasses and wearing sunglasses to protect her sensitive vision.

All three are little warriors who are bringing awareness of “the Glow” and of Coloboma to the general public. They want every parent or guardian to know about “the Glow” so more children can get the help they need in time.