To see or not to see...

Owen is visually impaired, which differs pretty significantly from blindness. All of the mechanics of his visual system work perfectly - his pupils, retina, optic nerve. Cortical visual impairment "occurs when there is damage or disturbance to the posterior visual pathways and/or the occipital lobes of the brain". It can be permanent or temporary and it is possible for vision to improve, especially in infants. The amount of potential repair will vary depending on the location, timing and extent of the damage as well as on interventions to stimulate the visual system. CVI is a condition that indicates that the brain does not consistently understand or interpret what the eyes see.

We have noticed that at times it seems as though his visual system is off-line and then at other times... we KNOW Owen is looking at us and trying to process the visual information. He will stare at our face or look around at our features and then rapidly close his eyes as if it is too much to process. When I mentioned this to the nurse practitioner who visited on Wednesday from Holly Ridge, she confirmed that yes, this is the way it is with children with CVI. Vision is sometimes "on" and sometimes "off" and can vary minute by minute and day by day. It takes a lot of focus and energy for Owen to try to process visual input and so closing his eyes in this manner is a sign he is taking a break from this intensity. An interesting note from the literature... "The vision of children with CVI has been described much like looking through a piece of Swiss cheese." Hard to imagine for those of us with no visual impairments but also easy to understand why this would be so confusing, especially for a baby who is trying to make sense of and organize his world.

Other characteristics of CVI:

• Children may exhibit poor depth perception, influencing their ability to reach for a target.
• Vision may be better when either the visual target or the child is moving.
• One third of children with CVI are photophobic, others are compulsive light gazers.
• Color vision is generally preserved in children with CVI (color perception is represented bilaterally in the brain, and is less susceptible to complete elimination).

Babies with CVI are easily over stimulated (visually) and need to be in a quiet setting in order to try to process visual information. There is a lot of great information out there on encouraging development of vision in children with CVI. We've also received information from Patty (the NP) at Holly Ridge and will no doubt be getting more once we are put in touch with the pediatric ophthamologist. One of our biggest challenges right now is getting Owen's pain and fussiness under control so that he does not spend all of his awake time attempting to deal with these issues and rather spends that time on development. He did have an excellent period of quiet alert time yesterday during which we presented him with several items to look at and touch (using the tactile sense to promote vision is one of the most effective ways to encourage visual development). We know he saw these items and were so encouraged by his attentiveness and willingness to visually explore the objects without looking away or tuning out. Will Owen see someday to such an extent that it will help him make better sense of his world? That is the question. We believe he will...

Love from Indianola,

S/K/O