Rebecca had an appointment this week with Ophthalmology at Children’s Hospital in Boston. The test involved us sitting in a pitch black room for a half hour, and then lights of different degrees of brightness being shown to Rebecca to see whether or not she could see them. From what the doctors have told us, and from what we have read, Usher Syndrome doesn’t affect vision until 7-10 years of age, so no worries, right? I was so sure of the results I told Jake he didn’t need to take the time off of work, and that I could go myself. So we sat in the dark room for a half hour, and they showed the lights of varying degrees of brightness to Rebecca, and then it was over. Rebecca was a little fussy during the test, which quickly went away when the lights came back on. The doctor then said to me, “Rebecca didn’t do as well as we had expected”, they said that another doctor would be in to go over the results with me. The Ophthalmologist and the doctor who performed the test went into a room and talked quietly while I waited in another room across the hall with Rebecca. The Ophthalmologist then came in and said that it took ten times the amount of light for Rebecca to see in the dark, compared to someone with normal vision. She said that when they do further testing of her eyes while she is under anesthesia for the implants, they expect to see some retinal degeneration. I told her that it didn’t seem right, I had been told that Usher Syndrome did not affect vision until 7-10 years of age, I didn’t understand. She told me that Type 1 Usher Syndrome can start as early as now, and that those ages that I had read were simply cases where they did not know they had Usher Syndrome and weren’t tested until they noticed the symptoms themselves. Usher Syndrome is already affecting her vision, her night vision, according to the doctors. My hope is that maybe the test was inaccurate because, afterall, she was fussy during the test. Maybe she wasn’t paying close enough attention, or maybe it is just my wishful thinking.
I am sorry Beth. This is disheartening news. My prayers continue. You are not alone in this fight for Rebecca.
Prayers and God Bless