Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content.

–Helen Keller 

Anophthalmia and Microphthalmia (A&M) are similar developmental disorders in which a person is born without an eye/eyes or an eye that is too small for normal function (respectively).  For the medical nerds out there (like us), the condition arises from a failure of the optic vesicle to form or differentiate appropriately in the embryo.  The etiology of the disorders is currently unknown.  A genetic component is possible, but the inheritance patterns do not appear to follow simple Mendelian genetics, and so it could be a gene that predisposes certain individuals to have an increased risk for developing the disorder.  However, it is also plausible that an environmental factor such as diet or other sources like a teratogenic infection could be causing the problem, or a combination of the two.  

       A&M are very rare disorders throughout the world, but have an unusually odd prevalence here in Micronesia with a rate of incidence many times higher than the average.   It is our hope that with some basic data collection, awareness of this prevalence can be raised, and enough interest can be generated in the scientific community to bring a team of researchers with the proper funding out here to investigate the issue.
       This morning we met a young boy named Prince who will be going into 2^nd grade next Fall.  He was born with bilateral anophthalmia and thus unable to see us as we walked up to greet him with his family.  He was shy at first, like most kids his age, stepping slowly behind his grandfather to hide as we introduced ourselves.  Unlike traditional family and parenting practices in the U.S., it is very normal for the maternal grandparents to play a major role in raising children in Pohnpei.  Prince’s family was a perfect example of this, though the grandparents’ role in this case became a necessity when his mother passed away several years ago – truly a heart-wrenching story.  

Meeting Prince with his grandfather and Donna

  After talking with Prince for a while about his favorite things to eat (donuts and bread) and what he wants to be when he grows up (a lawyer), it became apparent that he had certain behaviors that other kids did not.  He seemed to be constantly interacting with himself, from licking his knees to constantly tapping his feet on the floor.  Donna would later inform us that this pattern of behavior is referred to as “self-stimulation,” and usually occurs when a child who is blind does not receive enough outside stimulation from their environment (i.e. not enough objects to play with and manipulate).  This isn’t necessarily the fault of anyone in particular, but simply identifies the need to facilitate more involvement with his surroundings; everyone must do their part.  Indeed it seems we not only require the basic things like food and water for our development, but also enough interaction with the environment to satisfy the mind’s hunger to learn and understand the world around us.  The people on the island have a saying that illustrates this idea quite nicely – “it takes a village to raise a child.”

       The idea of everyone doing their part is not wasted on Prince’s grandfather, who recognizes the special treatment his grandson sometimes receives – “I feel like he’s been spoiled a bit.  I really just want him to be treated like the other kids.”  He would continue on to tell us stories of kids “helping” Prince by getting his food for him and bringing it to him at the table during lunch hour at school, or times when he has noticed Prince not being disciplined like the other children because the teacher is being “nice” to him due to his disability.  Though these people may feel like they’re helping, in the long run they are actually hurting Prince’s development and potential.  This becomes a perfect example of why proper education is especially important in the lives of visually impaired children like Prince.