Future Reflections Fall 1995, Vol. 14 No. 3
by Pauletta Feldman
The following article is reprinted from the volume 8, Number 2 issue of VIPS newsletter. VIPS is published by Visually Impaired Preschool Services, 1229 Garvin Place, Louisville, Kentucky 40202.
On our last scheduled visit to our pediatric ophthalmologist the doctor said that if my son Jamie, who is seven, ever experienced eye pain we were to get him to the eye doctor immediately. He went further and stated that he would remove a painful eye rather than have a blind child live in pain. I didn't quite understand the warning at the time, though I knew some blind adults who had lost one or both eyes in childhood.
We have been told by more than one eye doctor that complications could arise from retinopathy of prematurity (ROP), the eye condition that resulted in our Jamie's blindness. The one most often mentioned was glaucoma.
I tucked these warnings away; they were scary to think about. Though Jamie's eyes looked blind (and perhaps unattractive to others) they were the eyes I had come to love and through which his inner spirit shone out to those who gazed into them. I couldn't bear the thought of losing that.
But the warnings jumped into my mind when on a recent Saturday morning Jamie awoke crying with pain from his left eye. He had been fine the night before. However that morning he was in terrible pain and extremely listless. The whites of his eye were very red, showing a mass of tiny blood vessels. I took him to a pediatrician, but not our usual one because it was Saturday morning. The pediatrician treated him for conjunctivitis and said the listlessness was probably a sign that he was also coming down with a cold or virus. And sure enough, on the drive home Jamie began to vomit.
By mid-afternoon Jamie was crying out in pain and so listless that he could not walk or sit for any period of time. I broke down and called our eye doctor who said he'd see us immediately. The minute he looked at Jamie and heard about his symptoms (pain, listlessness, vomiting), he knew the problem: acute narrow-angle glaucoma. With this type of glaucoma pressure in the eye spikes suddenly and causes tremendous pain. As the weekend progressed Jamie did not respond to treatments to lower the pressure in his eye. He became increasingly sick. By Monday, he had to have surgery to remove the eye.
I thought it would be something that I couldn't bear but I found out that I could. What I couldn't bear was to see my happy, active seven-year-old reduced to such a sick child, curled in a fetal position with pain and weakness.
Examination of the eye after removal revealed that a blood vessel had broken, causing internal bleeding in the eye behind his detached retina which forced the retina forward, blocking the flow of fluids within the eye and raising the pressure. It was a condition which had been going on for awhile.
So I say to other parents, after this crisis of ours, eye pain is a warning sign that something is wrong! It is not to be neglected or left to the care of a doctor who is not a specialist. If your child complains of eye pain, call your ophthalmologist. And if you live in an area where you do not have ready access to an ophthalmologist, talk to your pediatrician or family doctor about possible complications of your child's eye condition and ask him or her to consult with an ophthalmologist.
As I said, Jamie's problem had been going on for sometime. We had noticed that his tendency to poke his left eye had greatly increased over the last year. This can be a sign of change in status in the eye as can be sudden, unexpected changes in behavior or disposition.
I certainly do not want to alarm other parents. Your child may never experience the problem that my son did. But I do want to share some advice:
1. Just because a child is blind does not mean his eye condition is necessarily stable. Be sure to see an ophthalmologist periodically to track your child's status.
2. Don't be afraid to ask your ophthalmologist questions about your child's condition, what complicating factors could arise in the future, and the signs which might signal a change.
3. Be sure to report any changes in your child's behavior relating to her eyes (such as increased poking or pressing on the eyes) to your ophthalmologist.
4. Be sure to consult with your ophthalmologist if you notice any change in the appearance of your child's eyes (such as opacity or redness).
5. Eye pain is a warning sign! Do not let it go unattended.
6. Discourage poking or pressing to prevent injury to the eye. Poking can be a cause as well as a symptom of a problem.
Within 12 hours of surgery Jamie was back to himself, and within 72 hours he was back at school and operating at almost 100%. Our doctor told him before surgery that he was going to take away his pain. And take it away he did. I felt such an exhilaration at having him "back" that I had little energy to grieve for the lost eye.
It helped tremendously having blind friends who called to find out how we were doing and to share their stories, perhaps knowing that Jamie would do okay if we were okay with the decision we made. On the way home from the hospital we were talking about a little neighbor boy who was also in the same hospital at the same time. He had asthma and pneumonia and was going to have to be in the hospital a week. Jamie's response was, "Gosh! That's worse than what I had!"