Topics of Discussion
wisdom from the Preemie-l e-mail group http://home.vicnet.net.au/~garyh/preemie.htm
|Maria & Ernesto pose the
question, "Hi to all, what I would like to know is of all you micropreemie parents is
how did you deal with finding out that your preemie had ROP,and what were the results if
they had to have the laser surgery? Our son Ernesto had laser surgery for ROP yesterday
and we were told that he would have something like tunnel vision. And we are trying to get
all the information that we can possibly get on ROP, because we know very little about it.
Needless to say we were terrified because his first two exams were all clear and this last
one was terrible. It went from nothing to one of his eyes having some blood in them
(stage3) in just 12 days. The doctor said with both of his prior exams that his eyes
looked good until this last exam. And now he is saying that possibly he had some signs of
ROP prior, but I guess it was not bad enough to say anything about it. So how do you think
that we feel, because we suredid not want and do not want him to go totally blind, so it's
like being between a rock and a hard spot. We would appreciate any and all responses
Suzanne offers, "John Henry had stage 3 ROP with Plus disease (an aggressive form of ROP). His ROP progressed very rapidly from stage 2 to stage 3. JH had cryo/laser surgery on both eyes one time. Cryo is the older type of *surgery*, laser is newer and I believe it often has a better outcome. John Henry is almost 4 years old, and has been wearing glasses since he was 10.5 months old. He is very nearsighted, but apparently sees fine with his glasses on, he can read kids' books and can see a McDonald's sign as soon as I can. :) I'm sure that his peripheral vision must be affected by the surgery,but it hasn't been a problem yet. I've tried to teach him to be sure to turn his head to be aware of what is at his sides, which people with strong prescription glasses should do anyway, since the glasses are in front of the eyes, and peripheral vision isn't corrected by the glasses. He doesn't really do it, but hopefully he'll listen to me more when he is older. He's a typical little boy, in preschool and lots of activities. He hasn't appeared to have depth perception problems so far, and didn't have other eye problems that preemies sometimes have, like wandering eyes. His retinas have been stable for quite awhile, hopefully they will stay that way.John Henry had just had heart surgery, was going to have hernia surgery, and was in isolation with RSV when his ROP went to stage 3. The surgeon's style was blunt and negative and so was the ophthalmologist's, so we didn't have any false high hopes. Having gone through all that John Henry had gone through already, it was *just* one more thing. We didn't have time to stop and think about it, which was probably good at that time."
Preston adds, "Chase had Stage 2-3 ROP w/ PLUS disease and had the laser surgery in May of 97. The DR who performed the surgery was FANTASTIC and we were extremely lucky to have access to him. He is very well known in the southeast and traveled the world lecturing on ROP. Prior to surgery he told me that even though Chase will lose his peripheral vision he will still be able "read, drive a car, and be able to hit a baseball". He also mentioned that if you or I were to lose our peripheral vision it would be a major change but for the kids, they will grow up accustomed to their line of vision. Like Chase (25 weeker), his eyes were very premature. He is very nearsighted and has glasses since he was 10 months old. His Ped Ophtmalhas told us many times that the laser surgery saved Chase's eyesight. And besides, people are continually remarking how cute he is w/ the adorable glasses."
Laura responds, "I have to chime in here. I don't think that losing peripheral vision is always a side effect of ROP surgery. At the meeting with the retinal specialist, he didn't mention that prior to Grace's surgery. However, on the day of the surgery, the neo told me that Grace would likely lose her peripheral vision. After the surgery, I asked the retinal specialist and he glanced at the neo and she said, "I was mistaken about that." He went on to explain it depends on how far back in the eye that the surgery (laser) is done. In our case, it was done so far back that he didn't think she would have any loss at all.... Grace had stage III ROP with plus disease."
Rachel remembers, "My son Colin, born at exactly 24 weeks, had laser surgery for ROP Stage 3+. Colin's ROP progressed quickly, too. This is not usual for the micropreemies. Colin is a success story for ROP surgery and I hope this will help you feel a little less scared. Colin only needed one surgery to fix his ROP. They checked his eyes 2 weeks post surgery and they were already showing signs of regression. They explained to me about the "tunnel vision" and said that it could be barely noticeable or it could really make a big difference. There was no way to tell until he was older. They also said he *would* need glasses. Colin is now 19 months adjusted and almost 23 months actual. He still does not have glasses. At his last eye exam (in August of 98) his eyesight still tested normal. His pupils are a little irregular in shape and we very small until about 8-10 months ago when they started looking much more normal in size in comparison to his irises. He seems to see very well both close up and far away. He finds very small crumbs and such on the floor with no problem (and picks them up, too!!).He can see a squirrel in the back of our yard (about 80-100 feet from the back door) without a problem. He can find all the items in his _I Spy_books without too much difficulty. We still have to wait until he is older to see how he really sees and how much peripheral vision was damaged with the surgery, but overall he can definitely see very well!"
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