I’ve moved this post from the comments, because I wanted to have it on the front page for everyone to read. I really love reading everyone’s stories about their kids and their glasses – I feel like I’ve learned so much from them, and I hope others do too. Please keep them coming (as always ann @ shinypebble . com, or leave a comment) – you can either just have me post the story, or I can set you up as an author so you can write more blog posts whenever you’d like. – Ann Z
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Hello, my name is Danielle and I am a mother of 2, Alex 17 months and Mia 3 months old. I thought I would also share my story and maybe this will help other parents that might have questions about cataracts.
I am also new to this complex world of eye problems. My daughter was born 3 months ago, and during her routine 2 week check up the doctor noticed that she did not have a red reflex in her right eye. He told me that this could either be a cataract, or she could be blind in her right eye.
I was completely caught off guard and felt like my heart stopped beating, my husband was home with our 17 month old son so I was alone when I received this information. I remember the look in the doctors eyes when he gave me the news. I stood there crying, holding my daughter, looking into her eyes, thinking why, and how, I thought cataracts only happened when you were old, how could this be happening to my beautiful newborn daughter. Her pediatrician sat on the phone for over 30 minutes trying to get us an appointment with an ophthalmologist. After multiple attempts, he was able to get us in to see a specialist at Boston Children’s hospital. When we saw the ophthalmologist she confirmed that Mia had a unilateral congenital cataract in her right eye.
This is when my head began to spin; we were told that she needed to have surgery within 2 weeks to have the cataract removed. We were also told that once her natural lens was removed, she will never be able to focus her eye so she will have to wear a contact lens. I was in shock, how are we going to place a contact lens in a 1 month old baby. They also told us that since her eye has never processed images, we will have to patch her good eye for a number of hours every day to force her right eye to being seeing; she will have to patch until she is 6-7 years old. I began crying and I mumbled “I’m sorry I just want her to live a normal life and I don’t want her to be teased”. I remember my husband saying in a very loud voice “that’s what her older brother is for”.
At this point we were given information about a study for infants with a cataract in one eye. We were given a choice to enter a study that would give Mia a 50% chance to have an IOL implant (intraocular lens) it’s a permanent contact lens placed in her eye. If she has the IOL implant we would not need to place a contact lens in and out of her eye, however she would need to wear glasses. This study is being conducted to determine if an IOL is more beneficial opposed to a contact lens. We were told that if she receives the IOL they will have to estimate what her eye strength and size will be when she gets older so the strength of her lens will be weak and she will have to wear glasses to make up the difference. I felt like everything was happening so fast and there was too much information to process. I felt like we might make the wrong decision that could impact her vision for the rest of her life. I was sooooo scared and I was also angry. After a lot of tears and research we decided to join the study in hopes that she would have the IOL. When she went in for surgery we found out about an hour into her surgery that she was chosen to have the IOL. Her surgery went really well and there were no complications.
It was a real eye opener being at the hospital for 2 days. It was a heart breaking experience seeing all of the children that were there for cancer and other major illnesses, it broke my heart. It made me so upset over the feelings and thoughts I was having prior to Mia’s surgery. All of the parents in the recovery room were looking at Mia, so small and fragile, with sympathy in their eyes. All I could do was wonder how they could look at my daughter with such sympathy when their child was battling cancer. It made me sit back and reassess how lucky we really are, our daughter was not at the hospital for a life threatening illness, she was able to go home. At this point we are in fear of her developing strabismus, amblyopia, glaucoma or eye infections. She is currently down to 1 drop from 4 different drops and ointments and we are now battling with her glasses and patching. She is doing really well keeping the glasses on, however they keep falling off every time she moves her head. Sorry this was so long, I just wanted to tell our story. If you have made it this far, thanks for listening.
mother to Alex and Mia