The initial postings on this page were sent to the ROP list in response to the experience of one parent whose child was not screened early for ROP. Later posts concern the frequency of examination and the speed of the progression of ROP. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: August 25, 1998
From: Janet M. Gresham
Things like this happen in the U.S. too. Our 9-year-old son had severe, multiple problems right from birth. Information we read in the NICU indicated that ROP wasn't that much of a problem anymore due to their knowledge of how much oxygen could be allowed to help prevent it. Therefore, we did not worry about it. Despite major problems in every other aspect of his hospitalization, his eyes were not checked at all until he was about 42 weeks gestation. By then, both retinas were already completed detached. Emergency surgery wasn't mentioned by the neonatologists, but they did tell us who we could call if we wanted his eyes checked further. He did eventually have surgeries to reattach the retinas, but the results were poor. In addition, his twin, who had some serious problems also (including a Grade 4 IVH) did not have an eye exam at all before his discharge. We were told the eye exam would be conducted the day of his dismissal. On that day my mother was having surgery elsewhere, and when I told the hospital staff this, I was told insurance would not cover his stay any longer. So I left my mother (who died a week later) to get my baby. We arrived before lunch and waited all afternoon for the ophthalmologist. His staff told the nurses he was in either clinic or surgery and would be there later that day. We kept insisting that the nurses call his office, which they did. They kept assuring us that the doctor would be there and that he did indeed know he was to check our baby's eyes. Finally, at 5 p.m. the nurses called again only to be informed that the doctor had left for the day. We left the hospital with our baby at 7 p.m. for a two-hour trip home. I finally got to the hospital to see my mother in the ICU at 10 p.m. Fortunately, this twin has never had ROP. We finally got his eyes checked by the doctor who performed our other child's surgeries. We also wrote a letter of complaint to the doctor's office and hospital but never heard a word from them or received so much as an apology. This doctor could have done our other son's eye surgeries, but because of his disregard for our time and this son's eyesight, we used a doctor who was six hours away rather than just two hours away. Janet
Date: August 25, 1998
From: Christine
Osborne
You know this ROP is still very controversial to the doctors. I don't know why so many of them still say that, because they have the oxygen figured out the babies don't have much of a chance to develop rop. Maybe quite a few years ago when the babies were not surviving at 22 weeks and up, with the babes being saved at an advanced gestation and the oxygen levels being way way up, maybe then the oxygen did play a vital role with rop. But today when they are trying to save babies such as my son Luke born at 22 weeks and 6 days, the doctors are dealing with so much more. A baby born at 22 weeks certainly does not have the eye development as a baby at 25 or 27 weeks. I would be more apt to say that my sons eye development, the rop, was due too him being born too early and not much too do with the oxygen. Luke was on just as much oxygen as his buddy beside him. But his buddy was born at 25 weeks and his eyes right from the very begining looked better than Lukes. When Luke first opened his eyes I knew that something wasn't right. He never did look at me the way I thought he should have....mother's intuition I guess. Anyway the medical field sure has alot of researching cut out for them in this area. I think the younger we save them today, the more complications there will be. I would be hard pressed to tell a family that there baby born at 22 weeks has a lot going for them. The risks are just that.....risky. I give lots of love and hope for any family having to go through the trauma of having their children born early, or anybody having to care for them, my heart goes out to you....
Date: August 25, 1998
From: Sarah J. Blake
I don't know about Canada, but I know that here in the US there is no standard for screening procedures or follow-up exams. Everyone does it a bit differently. I'll have to look in my files and see what the articles are saying. This is exactly the kind of thing I want to include in the book so that parents will be able to have the kind of information they need to get the best care for their babies. I know there is a lot of concern about how to determine which babies are most at risk, and I keep thinking I read something about ROP developing by a certain time period. That's what I will have to double-check.
Date: August 25, 1998
From: Susan
I am the mom of a 27 weeker, now 12 months with ROP stage 4 in both eyes (we are unsure yet of exact stage as we can't see into one eye at all due to cloudy cornea). We live in Ontario and My son was checked weekly while in the Neo-Natal Unit and upon discharge. I was told by one Doctor here that he would not see anything and there was nothing we could do about it, he was wrong.
I believe that it is suggested that very premature babies are checked weekly to ensure that the vessels in the eye are growing normally. Despite the fact that my son was checked weekly we have been very disappointed with the eye care that he has received, the support services available for visually impaired children...the whole system in general. The CNIB here has let all of their children's workers go due to funding cuts. The Doctors we have dealt with are always in a hurry and I felt those that had the expertise to operate did not have much experience with babies. We had such a great experience otherwise with his medical care but I am having a real struggle with getting what he needs as far as expert support and a Doctor that has time to speak to us. Most recently we have been travelling to the States to see a specialist there. Now he is over his many surgeries I am waging battles to get help for my son, and other children in this area. I have found my M.P.P. a valuable asset. I will check for you if the weekly visits are a hospital or Provincial mandate, it is an interesting question. I have often wondered what children do when their parents don't seek out these services and do battle for them, it frightens me.
It is very admirable that you want to help other parents, in the early stages of diagnosis it is so traumatic. The information should be readily available. If there is anything I can check into from the Ontario side of things please just ask. We are visiting Doctors all over!
Date: August 27, 1998
From: Helen Harrison
I just asked Dr. William Silverman, who has written several books on ROP, about guidelines in Canada and elsewhere for ROP exams, and I told him about the experiences of some of the list members, especially those from B.C.. He expressed surprise with these accounts saying that he had understood that no ROP- related blindness had occurred in British Columbia since a program of strict surveillance had been instituted. He said that a pediatric ophthalmologist, a Dr. Jahn (sp?), was the prime mover behind the close surveillance program in B.C. and that he would be the one to contact with questions and concerns about guidelines. If I find out anything more (like the correct spelling of this doctor's name), I will pass it along.