Adelaide was diagnosed with Glaucoma today around 6PM. It was a whirlwind of a day, but here’s a recap of how we got to this point.
Over the course of the last few weeks (about four) Matt and I each independently noticed one of Adelaide’s eyes (her left eye) growing larger than her other eye. Finally convinced that we weren’t seeing things, we mentioned it to each other about a week ago. Concerned but not worried, we decided to bring it up at our next well-baby visit (scheduled for Friday 9/11). Meanwhile we did tons of online research about the various causes for such a condition and various diseases for which an enlarged eye could be a symptom.
Yesterday, while I was at work, Matt noticed that the eye was not only noticeably larger than the other eye, but the lid was now red and puffy. This development was enough to cause significant alarm so Matt called and got an appointment for Adelaide this morning at 9am.
This morning, our Pediatrician gave Adelaide a good look over and listened to our account of events and symptoms and quickly decided that this was beyond her expertise and that we needed to see a specialist. She was amazing and booked us an appointment at OHSU for 4PM.
I couldn’t go to the appointment because I had a meeting at work, but Matt went with Adelaide to the Casey Eye Institute at OHSU for her appointment. All things considered, Adelaide did great! She was there for two hours and went through a gauntlet of tests, the scariest of which was an eye ultrasound checking for tumors. TUMORS!??!!! Don’t even get me started…
Finally after two hours with the amazing team at Casey Eye Institute our doctor explained that Adelaide has Primary Congenital Glaucoma.
According to WebMD, Primary Congenital Glaucoma is “a disease characterized by the improper development of the eye’s drainage channels. Because of this, the channels that normally drain the fluid from inside the eye do not function properly. More fluid is continually being produced but cannot be drained because of the improperly functioning drainage channels. This leads to high pressure inside the eye, called intraocular pressure, causing her eye to bulge and her iris to become cloudy. If untreated, the pressure and bulging eventually damages and disconnects the optical nerve causing blindness.”
Adelaide was diagnosed relatively early—she has an astigmatism in the affected eye and the optical nerve has started to “cup”, but both of those things are reversible with treatment so we’re lucky. We’re starting her treatment right away.
She has eye drops that we need to give her twice a day for two weeks to stop any further growth or damage. There is a slim chance that the drops could clear up her Glaucoma completely. However, as in the majority of Glaucoma cases, she will most likely need surgery to more effectively treat the disease.
We have a follow up phone call with our specialist next week and an appointment the week after. From there we will explore what other treatment options exist.
Glaucoma occurs in 0.05% of children in the U.S. which means our baby is just that much more unique! (I’m trying to stay positive here!) It also means that information about the disease and treatments is rare and good doctors are hard to come by. If you have any information or referrals we would LOVE LOVE LOVE to hear from you!
We’ve already received an out-pouring of well wishes from friends and family and we truly appreciate everyone’s sentiments.
No three-month-old deserves to go through this and we’re doing our best to make her recovery as easy and complete as possible.