[blindkid] Conformer question?

[Richard Holloway]

(Sorry of this gets posted twice-- I sent it first from the wrong  
email address before and it got bounced back pending approval to post  
by moderator.)

Our daughter wears scleral shells (often called painted shells or  
prosthetics) in both eyes. She started with conformers (basically  
clear versions of scleral shells) first in one eye and then in both.  
We switched to painted shells at around age 4. Kendra has virtually no  
eye on one side-- so small that doctors first thought it was missing.  
Her other eye is smaller than average and soon needed a conformer as  
she began to grow. (This is why we started with only the one  
conformer.) Both her conformers and shells have all been made of the  
same basic acrylic material. Sometimes existing shells are actually  
made larger as children grow by adding more clear acrylic material to  
existing painted shells. The functional difference in the two is  
cosmetic only.

Our daughter is able to wear her shells for weeks or months without  
removing them. Once she begins to outgrow them or occasionally when  
one gets bumped the wrong way it can rotate and need straightening or  
fall out. Our Ocularist tells us that some people leave them in all  
the time while others remove them at night, generally because extended  
wear is uncomfortable for some people. Our daughter gets quite upset  
at the feeling of having hers removed so we keep them in virtually all  
the time. If one falls out for her she wants it back in IMMEDIATELY. I  
can't speak to any adjustment at getting used to these because our  
chid has nearly always had these so it is all she knows but again her  
complaints are exclusively from having them out.

Not only can the gap from a missing or small eye effect the appearance  
of the eye, the lid growth and so forth, but we were advised that  
cranial development itself can be effected by a lack of pressure  
against the growing, developing bone inside the eye socket so I would  
suggest looking into this sooner as opposed to waiting. We have been  
very pleased overall with our conformers and scleral shells over the  
years. Ours look so realistic that people often have no idea that they  
are not real eyes until they notice that our child has no visual  
"reaction" to what she is appearing to look towards. In most cases,  
they can actually move about like normal eyes and the direction of the  
pupils is generally adjusted to look as if eyes are looking straight  
ahead when the eyes are relaxed no matter where the actual organic  
eyes are aimed beneath them.

For us, we have one which is like a huge, thick contact lens, covering  
the whole eye while the other is more like a complete eye with only a  
tiny space in the back to fit over a tiny eye (a few mm in diameter).  
The shape of these is a custom fit based on a mold taken from the eye  
socket. For adults and older children this can often be done in a few  
minutes in the Ocularist's office. Younger kids generally have to be  
but under anesthesia to get a proper mold of the required shape.

As one might expect, for Kendra, the thin one stays in better than the  
thicker one. In fact I cannot remember taking out the thin one in the  
last six months or perhaps even a year though the thick one may stay  
in for many months as well when it is fitting properly. We're going  
soon for a refitting since the larger one has been falling out more  
often lately but we clearly find that the older Kendra gets, the  
longer we go between size adjustments.

Richard Holloway, Vice President
Georgia Organization of Parents of Blind Children
www.gopbc.org