Thursday, June 14, 2012

Optic Nerve Hypoplasia Diagnosis

We sat down in the Ophthalmology department waiting to be called in to see why Noah's eye was having problems.  We were both tired being only five days since Noah's birth.  We went in, the doctor did all kinds of crazy tests, some that made all of us cry because we could see how uncomfortable it was for our newborn baby. The doctor then sat in front of us and told us the diagnosis.  "Noah has what is called Optic Nerve Hypoplasia in his left eye.  This is when the optic nerve does not grow fully and your son will never have sight in his left eye."  We thought the world had crashed down on us.  We sat there wiping away the tears and fear creeping up for the unknown future for our son.  We seriously thought this was the worse news ever.  Our son only has one working eye.  He will have to go through life with only half of his vision.  We were devastated.  The doctor then told us that he wanted us to do an MRI that Wednesday (two days) just to make sure he was correct in his diagnosis.  He also wanted some other electromagnetic tests done to test if Noah's right eye (the one working eye) was actually sending and receiving signals from the eye to the brain. 

We had two full days of worry and sadness and me just recovering from labor.  But all the while enjoying our new little bundle of cuteness wrapped in swaddling blankets.  We were deeply in love with Noah and even if he only had one working eye...who cared really.  He was our son and we love him. 

Wednesday came much too fast.  We were once again up at PCMC for the MRI.  They brought us back into a room filled with hospital beds as other children were recovering from sedation.  They then proceeded to give Noah his sedation so that he would not move while getting the MRI.  Everything seemed routine and smooth.  We ended up having to stay a full night there because Noah's little body would not wake up from sedation so he had to have around the clock supervision.  It was a long night for my husband and I trading the chair for the padded bench seat to get even a minutes worth of shut eye.

We went home the next morning and waited for the phone to ring to tell us the news.....

Helpful Links for Optic Nerve Hypoplasia/ Septo Optic Dysplasia:

Los Angeles Optic Nerve Hypoplasia Center

Facebook Optic-Nerve-Hypoplasia-ONH-Research-at-Childrens-Hospital

Magic Foundation

1 comment:

  1. Just know, they usually tell you the worst. They said our son was blind (BOTH eyes). He does have a very high prescription for glasses, however, with them he is not even legally blind :)

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