One month ago today, our 5 month old daughter Maggie was diagnosed with bilateral congenital cataracts on what we thought was a fairly routine visit to an opthamologist to check on a slightly lazy eye. Without surgery to remove the completely clouded lenses in both her eyes, her vision would quickly deteriorate until she was completely blind. Within 48 hours, the first surgery to remove the lens from her right eye was complete and we were at home with Maggie learning how to keep a 5 month old from touching her eye.
Luckily, the surgery was a success and Maggie recovered quickly. A week later she got a contact lens that served as a replacement for the real lens they removed from her eye. With the contact lens, Maggie could see clearly from her right eye for the first time in months. She was ecstatic!
Mom and dad struggled with putting the lens in and taking it out, but finally got the hang of it by the time surgery #2 for the left eye came around. So far, the left eye surgery seems to be a success as well and Maggie was back to her old self the next day. She'll get a contact lens for the left eye after a week or so, at which point we hope her vision and eye alignment start making real progress.
We have another month of constant supervision for Maggie ahead of us, which means she won't be returning to daycare until May. A million thanks to Julia's mom, Karen, for traveling to Raleigh for several days every week to take care of Maggie so we can both go to work at the same time. We are both lucky enough to have the ability to work from home as well, so on days when Karen isn't here we split the time so one of us can go to the office and the other works remotely with Maggie as an assistant.
We also have to send big thanks to Dr. Enyedi and the entire staff at the Duke Eye Center. Everyone has been great to us and so far the results are amazing. We are very lucky to be only 30 minutes away from such a great facility, we've read online of folks traveling from as far away as Seattle to work with the Pediatric Opthamologists/Surgeons at Duke.
The condition that Maggie's doctor believes is responsible for her cataracts is Posterior Lenticonus. The cause is thus far unknown in Maggie's case, as is common with this condition (many cases are "sporadic"). It can be inherited, but we haven't identified anyone in either family that has a similar condition so we're in the "sporadic" category for now. Infant cataracts can also be connected with serious metabolic diseases, so the doctors ran numerous blood tests. They all came back negative!
Feel free to do your own search if you're interested, there is a lot of information available on the web but most of it is clinical and difficult to sift through. Here are two links that give some info for the curious.
Brief description of Posterior Lenticonus
Overview of Congenital Cataracts
2 comments:
Thanks for the update man! Have fun with those lenses. Reminds me of Isaac's time on the respiration monitor... just when you think infant care is as time and energy consuming as it can get, a new layer of difficulty gets lumped on top. Fortunately for them we are suckers and will do anything to make them happy!
Sounds like the professor is doing really well! Thanks for keeping us updated. She is too stinking cute- I really need to come see her in person.
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