My daughter was born with beautiful, light blue eyes. She seemed to have completely normal vision for the first two years of her life although in retrospect we might have taken more note of how she wanted to be close to things to see when we read stories. She failed the free vision test given at school at two and we ignored it because she seemed to see fine. The second-year she failed we decided to have it checked into.
We were fortunate to be connected to a premier pediatric opthalmologist at the reputable Duke Eye Clinic. After not being able to figure out what was going on that caused my daughter to do so poorly during her exam, Dr. Grace opted to take her into the OR to do an "Exam Under Anesthesia" or EUA. It's hard to get a three-year-old to hold still and some of what she needed to do wouldn't be tolerated by a child.
That first look at my daughter's eyes told us so much, but we didn't think it was anything important or dangerous. She had multiple congenital malformations. Her eyes were abnormally small, called microphthalmia. She had a webbing of vessels that should have receded during gestation but for some reason persisted. And she had poor vasculature, something that would make it hard for her eyes to thrive. We found out later she also had spherophakic lenses. But what did all that mean as far as my daughter's vision?
It explained a lot. Her lenses were more like a marble and less like an almond. It's easy to flex an almond shape and this is what happens when we focus on different things. My daughter needed to see up close because she had very little ability to focus. The web of vessels over her field of vision was an odd one, and was quite uncommon. It was like having a haze over her vision.
"So what glasses did we need to get to fix her vision," we asked. This was the first in a series of hard answers we got with my daughter's eyes. Glasses couldn't fix what she had going on. We all tend to think glasses will solve any vision problem, but that's only because the vast majority of people can have their vision improved or corrected with glasses. But it doesn't fix everything.
The bad news (that we largely dismissed because surely nothing could really be that wrong with her eyes, right?) continued. The vessels in her eyes weren't normal and it could cause problems down the road. And also, the congenital small eyes had a high correlation to blindness.
We did nothing and things were about the same with my daughter needing to get close to see things, but being able to see nonetheless, until one day we were at a Practice Thanksgiving at a friend's house. As we were preparing to leave, my daughter asked where the cat was? She loves cats. We pointed and told her the cat was on the sofa right over there. Only she couldn't see the cat.
In the next few days my husband told me suddenly that my daughter's pupils weren't round. I didn't believe him. I looked and was shocked. Her eyes were not only not round, it was like they were blowing out from the inside. The blue was disappearing and turning grey. We called for an emergency appointment with the same doctor we'd seen earlier in the year and fortunately, she got her quickly into the office.
When she saw my daughter's eyes she scheduled her for the OR immediately. She had no idea what was going on externally and she couldn't see well inside her eyes for some reason. Knowing now what I didn't know then, the speed with which she got my daughter into an OR at the Duke Eye Center with multiple specialists is astounding.
When Dr. Grace came out from the OR, she told us there was a fairly severe infection in my daughter's eyes, clouding the internal eye structure. This was one of the reasons they hadn't been able to see much at her office. Had she been sick? No, she hadn't been sick at all; this was August of 2015 and we hadn't had any summer sickness in our household at all. She told us she had what was known as a "serous type" retinal detachment in her eyes. The infection had caused fluid to build up behind her retinas and they had detached as a result.
The thing is, none of this was a known thing to happen to children's eyes. Having a serous detachment was rare. Having it happen to both eyes at once was highly unlikely and having it happen to a child was unheard of. They needed to find out more and wanted to know if more was at play than just my daughter's eyes, so they admitted her to Duke hospital for a full workup.
Over the next three days, we had discipline after discipline come to talk with us, run tests, take scans, examine her, withdraw blood and spinal fluid, and in general try to come up with a cause. There were fellows and interns coming in and asking questions, doing research, and hoping to be the one to put some unknown puzzle pieces into place to explain why, which might lead to helping improve things.
In the end, we went home with her eyes in the same, broken state and not a single answer. Everything else with my daughter was healthy. Her retinas remained detached with no way of removing the fluid behind her retinas and without that, the retinas couldn't hope to reattach. The only thought was, and they admitted this was a guess, that it was autoimmune related.
For months we had autoimmune medication intravenously given to my daughter every two weeks. She had eye drops to help with the infection, which receded fairly quickly, although the detachment situation remained unchanged. She had an EUA in the OR every two weeks with more doctors looking in on her, checking to see if they had ideas or if anything had changed. They injected Avastin in her eyes to remove some of the errant, "bad" vessels in the hopes the bigger ones would provide better oxygenation to her eyes. But other than look, they couldn't do anything.
This ends what I'd consider the first chapter of what happened to my daughter's eyes, starting with a cat she couldn't see on a couch. Tomorrow I'll go into what we did next and how both hope and realistic expectations are something you can have at the same time.
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