Mackie is Visually Impaired

Did you know that prenatal alcohol exposure can affect the eyes and the connections to the brain?

For babies with FULL Fetal Alcohol Syndrome, the measurements of their eyes help them get diagnosed. We can SEE their FAS diagnosis. It is not hidden. But what is hidden and missing from the equation is how that prenatal alcohol has affected those eyes and what has developed under the eyes.

Mac was seen shortly after we got him at l7 months by a pediatric opthalmologist at the UW who saw that he had what she thought were pale optic nerves. She put in an order to get an MRI of his optic nerves. She informed me that fairly often babies with Full Fetal Alcohol Syndrome can have optic nerve hypoplasia. Digging into the literature I found the statistic. Some say up to 40% in a couple of studies. With doing a search of the research it is very well known the universally kids with Fetal Alcohol Syndrome have ONH. Optic nerve hypoplasia.

Mackie has full FAS. He also has strabismus, ptosis and severe light sensitivities. His retina is affected by prenatal alcohol.
He had been given glasses as a teeny tiny infant and would never wear them.

The Pediatric Opthalmologist ran a test called a VEP.
Visual Evoked Potential/Response (VEP/VER) measures the electrical signal generated at the visual cortex in response to visual stimulation. It was abnormal. Delayed Visual Maturation was the next diagnosis. A big clue that the connections from his eye lenses to the brain were not working well. But Mac was 21 months old.
Something was abnormal.

He didn’t see toys, he didn’t look to peoples faces. He didn’t visually this or that leading to a diagnosis of AUTISM SPECTRUM DISORDER with a Ados score of 27, moderate to severe autism.

In time we would find more and more struggles with Mac’s vision. Alternating Amblyopia, Strabismus, Pursuit dysfunction, Convergence insufficiency and with help from our Special Education Director a functional vision assessment was done. She looked at how Mac uses his vision. And he began school with his Visual impairment as part of his qualifying factors for his Special Education services at 3.

Time and knowledge of the understanding of Visual Processing and Mac’s challenges would lead to a diagnosis of CVI, Cortical Visual Impairment.

Often times littles who have CVI are diagnosed with Autism first and later if blessed to get to someone who understands this little known condition may have both diagnosis.

But thinking to myself. Just remember, I am just a Mom, not a medical professional, or psychologist. But if a baby has trouble seeing their environment, the faces of their caregivers and more. Wouldn’t their motor, their interactions and ability to be social be affected? So they would have delays in those areas, leading to an autism diagnosis?

So my theory is that the more the eyes and the visual processing systems are affected the more we may SEE the delays.

When talking with some of the Vision Experts, if for a child with full FAS we know the EYES are AFFECTED (they can see the shortened eye slits etc. it got them diagnosed. Shouldn’t we be looking DIGGING DEEPER into how the eyes are FUNCTIONALLY AFFECTED?

We found Mac’s Opthalmological and Visual Processing challenges.
And it opened the door to helping us help him and understand his challenges.