CVI

CVI is short for Cortical Visual Impairment or otherwise known as Cerebral Visual Impairment or Cortical Blindness. I honestly did not think anything was off about Thomas’ eyesight until he reached a corrected age of 2-3 months old. He was about 4 1/2 months actual. His therapist made a referral on her second visit to BLENNZ (Blind & Low Vision Education Network NZ) for an assessment.

Things that seemed off included:

• No mutual gaze or eye contact.
• He would not look at faces or show any interest in looking at faces.
• He did not seem to look at objects let alone track them.
• He did not smile but he could put on a mean pout!
• I caught him batting at objects in his bouncer chair but he wasn’t looking directly at them. I only saw him do this once or twice.
• Thomas did not flinch or blink when something was close to his eyes.
• He would use his periphery a lot.
• Thomas was always more content being swayed, rocked or walked about. He was not happy to sit still. (We thought this was stubbornness!)
• The earliest sign, however, was noted back in NICU but we thought that he was genuinely captivated at the time when he appeared completely taken by the light. His cot was moved closer to a large window in NICU and we commented on how he seemed distracted by the light coming through. We thought it was great that he was seeing and responding to his environment at the time.

So the referral was made and we waited, and waited and waited. Got pretty impatient in the end and left messages and more messages. (Bad timing with school holidays turns out! ) Plunket visited during this ‘waiting’ period and the nurse made a referral to an ophthalmologist and managed to make contact with BLENNZ. Thomas had a healthy assessment with the ophthalmologist and they did detect that Thomas appeared to respond to changes in light and dark. The ophthalmologist said that due to Thomas’ brain injury it could either be CVI or DVM (Delayed Visual Maturation) but most likely CVI. He said there was nothing he could do but hold our hand. BLENNZ completed an assessment and confirmed what I already suspected for a couple months which was CVI.

How did I know? I am attached to a PVL facebook group and had noticed a trend with a lot of the other parents’ children who had PVL also had an eye condition called CVI. I did a little research and found an amazing video on YouTube and it described all of the characteristics that Thomas was displaying.

If you would like to learn more about CVI, click on the below link of an awesome website.

http://www.littlebearsees.org/what-is-cvi/

The key with CVI is early intervention and lots of vision therapy. Thomas has a visiting vision therapist and they assist and provide me with equipment and resources tailored to his needs. I also attend their campus playgroup in South Auckland. It is a wonderful campus and the teachers there are very lovely and supportive.

Here is Thomas in his sensory box specifically designed to meet his needs. He absolutely loves his sensory box and it is such a joy to see him play and interact with his environment.