Most children with retinoblastoma have an eye surgically removed to save their life.
Teachers will naturally worry about what your child looks like without the eye, and what they should do if it falls out.
Help them understand enucleation, the prosthesis and artificial eye care, and prepare them for situations that may arise when your child is in their care. This will reduce stress for your child, the staff and you.
Show the staff an artificial eye, and a photograph of a child when the eye is removed. Explain that the socket resembles skin inside the mouth. This will dispel misconceptions and fears, and give them a chance to ask questions.
Encourage the teacher to read our Child Life section on living with a special eye. This includes information on handling the eye and supporting children. Sensitive support will be especially important in school if your child does not have an artificial eye or is not able to wear the prosthesis temporarily.
Cleaning the Eye
Provide a simple written instruction about wiping the lids of the artificial eye to remove discharge. Give a copy to your child’s teacher and the school nurse. Showing how to wipe the lids and eyelashes will probably boost the teacher’s confidence – remember how you felt when first cleaning your child’s eye.
If you prefer that the teacher encourage your child to clean the eye, be sure she has the skills to do this by practicing at home. Ask your child how she would like to handle cleaning of the eye at school – by herself or with help from an adult.
Problems with the Eye
Agree with the teachers what will happen if the eye turns round or is dislodged. Provide a tub labelled with your child’s name to keep the eye safe if it is not immediately replaced. Ask the teacher to document in the plan where this is stored, and when it is used.
If you wish to put the eye back in yourself, make sure your current contact number is on record, and that the teacher knows she should call you in when a problem arises. The socket will come to no harm if the eye is left out until the end of the day, or until you arrive.
Explain how your child copes with such events. When teachers anticipate your child’s response, she can minimize fuss and limit the curiosity of other children.
Decide with your child and the teacher whether she will stay in class or be allowed to wait in a quiet place until you arrive. Ask that she be permitted to wear shades until the eye has been replaced, it she wishes to.
The trust and respect between your child and her teacher may give her confidence to replace the eye, or allow the teacher to do this. This also depends on your relationship with the teacher and the training you give.
Deliberately Removing the Eye
If your child removes the eye for effect, the least fuss made the better. If she knows how to replace it, ask the teacher to discretely encourage her to do so. If no attention is forthcoming, children quickly stop removing the eye.
Although moving the eye around and taking it out can be a nuisance, it is a good sign that your child is accepting of the eye and not self conscious. This should be encouraged whenever possible. Our Child Life section includes a page you may find helpful on keeping the eye in place.