Emma – Scarred Cornea and Glaucoma

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Emma is turning one in June. She has only been here for a year, but she has sure filled our lives with joy, laughter, and fun!

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When Emma was born her left eye did not develop correctly. We noticed something was wrong the day she was born and we thought it was possibly a cataract. Being her mother I was devastated that something was wrong with my sweet baby girl, but I felt an overwhelming peace that she would be taken care of. I assumed this meant that her eye would be fixed and she would have two good eyes. Unfortunately, that was not the case.

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After taking Emma to specialists at the Casey Eye Institute we discovered that Emma would most likely be blind in her left eye. The eye was under developed and the cornea was scarred. We were saddened by the news, but remained hopeful. Our doctor referred us to a corneal specialist and after meeting with him we discovered that a corneal transplant could be done and if all goes well Emma would have 80% of vision! We were hesitant but proceeded with the surgery. The success rate in infant corneal transplants are slim, but we felt we had to try everything we could for her.

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The day of the surgery was nerve racking, but again hopeful. When the surgeon came out we were expecting to hear that all went well, but not so. When he took off her cornea her lens and iris came out as well. It seems that it was not just the cornea that did not completely develop, but also the lens and iris. We wondered what this would mean for Emma and we soon found out.

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Not long after surgery Emma developed glaucoma, which is pressure in the eye. Her pressure is so high that her eye has grown and is being monitored in case it ruptures. The doctors tried to do another procedure to drain the fluid, but felt it was too risky. Instead they put Emma on pressure drops and a prescription for glasses . These drops help Emma’s eye to remain pretty stable and comfortable, but her eye is still slowly growing. The glasses are mainly for protection and sure are cute! We had hoped that Emma’s eye would stabilize and she could keep it, but due to the continual growth we are meeting with ocular facial specialists and our regular pediatric ophthalmologist to determine when the best time would be for a prosthetic eye.
So, Emma’s story continues but even with one prosthetic eye we will always remain hopeful for Emma to have great vision in her right eye and we remain grateful for the doctors that have helped and continue to help us in this adventure!
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6 Comments

  • lmymusic says:

    thank you for sharing your child story. My child has a scarred cornea in her right eye. Going through the experiences, I feel your pain and hope that your child is better and better.

  • Whitney says:

    Hi, my daughter was born with a cornea malformation which looks almost identical! We went through a cornea transplant at 21 days old, patching, glasses, and an additional surgery due to glaucoma. We always heard from the doctors “I’ve never seen anything like this”, but I’m SO glad I found this page as it has given us so much support! My daughter is now 2 and just received her prosthetic eye last week! (The cornea transplant ultimately rejected and removal of her eye was necessary) It’s amazing and she is extremely happy with it! I’d love to have some communication with other parents who have been in similar situations!

  • Whitney Caraway says:

    My daughter was born with her left eye looking almost identical to this. This story is all too familiar. I feel for everything you have gone through! My daughter is now two and just received her prosthetic eye, which we were hesitant about doing because we were told her bone structure would not develop correctly around it. But she has done awesome and I am so thankful that she is living pain free finally! Please let me know if there is any way I can be in contact with parents of similar stories!

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