Mike,
I happened to be surfing on the web for some more information on RB and your site was the only one that came up. My husband, Brian, lost his left eye to RB at the age of 6 months. He was adopted and we had no idea that RB was the cause until we started to search for his biological family.
According to the information we received from Social Services he was in foster care for three years. Soon after he was born, his foster mother noticed something "peculiar" about his eye and kept reporting it to the proper authorities who paid no attention to her and told her that it was normal for a child to have eyes that weren't the same. After a lot of persistance he was finally looked at and immediately taken to Children's Hospital in Washington, DC where they removed the eye. He was then scheduled to have the other eye removed because there was a mass behind that one as well. Luckily, he was running a fever that day and they couldn't operate. They decided to wait and see if it would clear up and it did. He has near perfect vision in the one that was saved. (Although driving with him can sometimes be an adventure with no peripheral vision!)
After we got engaged I was at the opthamoligist for a routine exam and I asked him about RB. Without hesistation he told me that we could never have kids. He then went on to urge genetic counseling at Johns Hopkins in MD. Do you know anyone at Johns Hopkins to recommend?
After we were married we found his biological family. He has 1 full brother and 2 half brothers. None have RB, but one was born with a severe bilateral cleft. Is there any connection?
I am just starting my research on RB and I am a little terrified to even consider starting a family. Do you know of cases where the vision wasn't lost even when the eye was saved? Most people tell me to go ahead and to not worry about it, but I don't think that they are aware of what the possibilities could be with RB. Any suggestions?
Okay to publish
Holly W. Vanderhoof
Okay to e-mail: holly_walz@nt.com
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