River’s Story

Posted on 2017-10-09
Zach & Kati Simmons were sitting in the pediatrician’s clinic with their then four-day old baby girl, River Laine, waiting for her discharge appointment.  River was finally bright-eyed and looked up at the florescent lights – Kati was surprised at what she saw. She told her husband “River’s pupils are like lines, they just drop into her iris.” Moments later the pediatrician evaluated River and diagnosed her with bilateral Coloboma and nystagmus
 
It all happened very quickly and left River’s parents concerned and confused. They were told as much about the condition as possible, even though “as much” wasn’t much at all, as coloboma is a very rare eye defect.  It was a condition where the normal tissue in or around the eye is missing and that this loss of tissue could result in vision loss.  They were scheduled for a pediatric ophthalmology appointment that would take place one month later.  Zach and Kati left the pediatrician’s office in a cloud of uncertainty.  
 
Alarmed by the diagnosis and unable to wait for answers, they did as much research as possible.  They searched the web and joined many support groups.  Through this, they learned that Coloboma is found in approximately 1 in 10,000 births.  They learned that the missing tissue can affect any or all parts of the eye structure; the choroid, ciliary body, eyelid, iris, lens, optic nerve or retina.  There are no treatments.  There is no cure.
 
The day finally came where they were able to visit the specialist.  During this visit they were told that River’s coloboma affected every part of her eye.  She had little to no vision in her left eye and she would never regain this vision.  Her right eye was affected as well, but there was some limited vision in this eye.  The coloboma in her pupil caused it to have an unusual shape.  Instead of being round, River’s was shaped like a “keyhole”.  She was also diagnosed with Nystagmus, a condition where the eyes shake periodically and uncontrollably, also known as dancing eye. 
   
River’s parents were at first disheartened by the diagnosis.  However, they quickly made the determination that her condition would not define her or hold her back in any way.  She was different than most, but her differences are what made her so special.  They had a strong faith in God and in His plans for her.
   
River is a sweet, loving, bright 14-month-old.  She takes part in many of the offerings that early Childhood Services has, such as physical therapy, occupational therapy, & sees an Optimizing and mobility specialist. River is also already registered within her school district and weekly sees the school district’s Vision teacher as well (she will have this same teacher until she graduates, if she stays within district).  Although River’s parents were told she would have developmental delays, she has met all her milestones and on time. She has even just started to walk.  River has very large, crystal blue eyes.  They often stop people to comment on their beauty.  River’s parents take these moments to educate others about her condition and show them just how unique and amazing she is.  
 
The Glow in her pupil that is often visible by the naked eye has led to a new nickname, “twinkle eyes”. 
 

Update! 

River is now over 2 years and 5 months.  In the past 15 months, River has stopped visits with her occupational therapist as they were told that she is actually advanced for her age, regardless of her vision!  She has continuously seen her visual impairment teacher and her ophthalmologist. Originally her glasses were prescribed simply for protection, however recently her Ophthalmologist changed her to a very strong script as he feels this will improve her vision. Her ophthalmologist has also noticed River’s eyes beginning to cross in a bit more.  This is a very common development with Coloboma. He has suggested River have surgery for this developmental misalignment within the next year. This surgery would not correct her vision, but would allow her to better focus. They will continue to monitor River through this year and made a determination at a later date.

Kati says that River is nothing short of a miracle and will not allow ANYONE to hold her back. She does all things with the limited vision she has.   She says that River is a tad more clumsy than the usual toddler, but that she is pretty tough. “She is a happy, spunky, and rambunctious little one, with the most special and precious eyes I’ve ever seen”!