http://www.cdlsusa.org/publications/ask-the-doctor_sleeping-with-eyes-open.html said:
Q. My daughter sleeps with her eyes a little open and because of this, her eyes become dry. You told us last year at the Boston Convention that this could cause damage and you recommended ointments and patching to heal the corneas.
Our doctor here at home says, "We can't do ointments forever." He would like to try surgery to sew the eyelids together at the ends in order to help keep them closed at night.
Is this a permanent solution? Is it helpful? Do you know of other children who have had this surgery? Are there problems or concerns associated with this treatment?
Children with CdLS who have droopy eyelids (ptosis) may sleep with their eyes partly open because of the weakness in the upper eyelid. As a result, part of the eye will be exposed while the child is sleeping. Fortunately, two things protect the cornea (the crystal clear dome over the colored part of the eye) from drying out. Firstly, most children have a reflex, the Bell's phenomena, in which the eyes turn up when we sleep, thus leaving only the white of the eye exposed. Secondly, for unknown reasons, the cornea of children tends to be much more resistant to damage from exposure. Many children can sleep with their eyes partially open and never experience any problems.
In the rare situation where the eye is not automatically turning up during sleep and where the cornea is becoming dry, patients may be given lubricating ointments (artificial tear ointments) to keep the surface of the eye moist during sleep. This is usually very effective. Sometimes, if damage to the cornea is beginning to occur despite the use of ointment, one can use tape or a patch to keep the eyelids closed during sleep.
Sewing the outer and/or inner edges of the upper and lower lids together (tarsorrhaphy) is reserved for only the most severe cases of recalcitrant exposure. Certainly, one would not like to pursue this route of treatment just to eliminate the inconvenience of instilling ointment. However, when the cornea is becoming damaged despite ointments, tape or patching, then this would be a reasonable alternative.
If tarsorrhaphy must be done, the entire eyelids need not be fused together. To allow the eye to continue to see, only the outer and/or inner edges are put together, thus narrowing the opening between the eyelids. The procedure is done under general anesthesia. Once the wounds have healed, which occurs quite quickly, it is not painful. Some parents wonder how the child will resist opening the eyelids. In fact, this suspected desire to try and "fight" the effects of surgery does not occur. Tarsorrhaphy can make future examination of the eye more difficult since the opening between the eyelid is narrower. If a child has other ocular problems which will necessitate ongoing complete eye examinations, this may be another relative reason to try an alternative treatment.
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