This update comes from Danielle, whose daughter Mia had cataract surgery as an infant, and continues to deal with glaucoma, patching, and contacts. You can read more of Danielle’s posts about Mia here (introducing Mia, after her second glaucoma surgery, occluding lens for patching, glaucoma valve shifting and corneal scarring, Mia’s contact lens). -Ann Z
I have been avoiding little four eyes because we have been having a tough time with contacts and patching. As Mia gets older, the stronger she gets, not only with physical strength, but with mental strength and stubbornness. She is my little firecracker and she does not like having her vision taken away. She has become crafty with her contact lenses and has learned how to remove them, or a new trick where she puts her finger on her occlusion lens and slides it to the corner of her eye. It must be very uncomfortable, however she chooses to be uncomfortable in order to see. Mia’s vision without correction is 20/1300 so she is legally blind in her right eye; and with correction she is 20/360. I compare her vision with someone that is blind, so when she is patched I am literally stealing her vision and expecting her to function and move around like she can see; which she can’t. I understand that patching will increase her vision, however the time it will take to regain vision in her right eye is torture to her.
During an exam under anesthesia 2 months ago, we found out that Mia’s glaucoma returned. She had valve surgery 3 weeks ago and everything went really well. As usual she was starved when she woke up and wanted her juice and crackers, and to get the hell out of the hospital; saying “bye bye” every few seconds. Since Mia is so strong willed about having anything on her face, we purchased soft splints for her arms to prevent her from removing her eye shield and bandages. She hates the splints and learned very quickly to keep her hands away from her eye or they will go back on. It broke my heart that she does not even realize that her right eye is covered; which means she is pretty much blind in this eye. She is walking around like normal, not even skipping a beat. It kills me, it makes me feel like I have not done everything in my power to prevent her right eye from going blind. I am sitting here crying as I type thinking, how and why. This has been such a hard and devastating road that we have traveled. But I hope and pray that it is not to late to save her vision. Sometimes I think about the choices we have made; what if we decided to do nothing when we were informed about her cataract when she was 12 days old. Yes, she would have gone blind in her eye, however she would not have to endure surgery after surgery, or nystagmus, amblyopia, exotropia, glaucoma, patching, glasses, contact lenses, eyes drops, ointments. My father always says “you make the best decision based on the information you are provided with, that is all you can do”. But this does not make me feel like the decisions we have made were the right decisions, or even the best decisions. Mia is only 20 months old and she has had to endure more than most people during her short 20 months of life. I just wish I could take it all away, that I could be the one going through all of this rather than her. I am sorry that this post is so pessimistic, I am just having a difficult time and I need to get this off my chest and this is the best place for me to vent, you all know the pain I am feeling.
We are planning to use her arm splints to help with patch time. I just hope that we have not lost all that we have worked so hard to save.
To all the parents that are faced with surgery, it is hard, the hardest situation you will ever be placed in, and going in the operating room to assist with putting your child under is the hardest part. I have done this 4 times and it does not get any easier.
I have attached a few pictures of Mia. I hope everyone is doing great, and you all had a wonderful Christmas and/or holiday season.