Anophthalmia

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What Is Anophthalmia?

Anophthalmia is a condition in which one or both eyes do not form during pregnancy. When both eyes are affected, blindness results.

An individual with anophthalmia may have accompanying birth defects, as anophthalmia is a genetic mutation.

How is Anophthalmia Diagnosed?

Anopthalmia may be diagnosed during a prenatal ultrasound. Alternatively, it is diagnosed soon after birth when parents and the pediatrician notice a lack of eye tissue/ essentially non-existent eyeball. An MRI can confirm the diagnosis.

Are There Treatments for Anophthalmia?

There is no cure for anophthalmia, however, “conformers” (clear, plastic shapers) are recommended to be placed inside the eye socket(s) to promote proper growth and development of the eye socket and facial bones, as well as to serve cosmetic purposes. The conformers are changed to a larger size every few weeks during the first two years of the child’s life, encouraging growth of the eye socket alongside rapid facial growth.

At approximately age two, prosthetic eyes (painted artificial eyes) can be inserted (and changed far less frequently).

How Would You Describe the Eyesight of One with Anophthalmia and How Will My Child Function with It?

If your child is blind in one eye and has good vision in the other, he will not technically have “low vision”. However, absent vision in one eye can affect how your child functions. Some children find it straining to read from a chalkboard or catch an oncoming ball, and many have struggles with depth perception.

If you suspect your child’s education is adversely affected, request a Functional Vision Assessment by your region’s Teacher of Students with Visual Impairment (TVI). The TVI can teach your child strategies and use of assistive technology to work around loss of vision.

Strategies may include visual efficiency skills such as scanning an environment in an organized manner, and sitting in a preferred seat within the classroom to accommodate for optimal viewing.

Furthermore, your child may benefit from an orientation and mobility specialist to provide instruction on using a cane to refrain from bumping into obstacles in his reduced visual field.

If your child has no vision, your child’s Teacher of Students with Visual Impairments should perform a Learning Media Assessment to determine which senses your child primarily uses to get information from the environment. This assessment, along with an Orientation and Mobility Assessment conducted by a mobility specialist, will give the team information needed to make specific recommendations for your child to best access learning material and his or her environment.

Your child will likely learn braille for reading and writing; make use of a variety of assistive technology to navigate the computer and internet, as well as printed information; and utilize accommodations to access and engage in the world around him or her, including the core curriculum in school.

Resources for Families of Children with Anophthalmia

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