Your stories: you make the best decision based on the information you are provided with

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

picture of a toddler girl

Mia at 20 months

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.

picture of toddler girl with glaucoma and cataracts

Mia after her glaucoma surgery

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.

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15 responses to “Your stories: you make the best decision based on the information you are provided with

  1. Thank you for being so willing to share such difficult times. It allows the rest of us to send our deepest thoughts and paryers to you and Mia. Not having gone through this, but observing our daughter Ann with Zoe, I think it is much harder on parents than the kid, but that doesn’t make it any easier for either.
    Thanks again.

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  2. So sorry for the pain you and your daughter have endured. My son has amblyopia and I think someone from this group (?) had told me about FrameHuggers.com soft eye patch that fits over eyeglasses and is washable (made with fleece for comfort), doctor recommended and they can put a cute applique on it.

    She made me one for my son that I plan on doing a review on at my website hopefully in the next few weeks.

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  3. I’m so sorry to hear about the difficult times you and Mia have endured. It brought tears to my eyes just reading about it. I feel the same way…always questioning my decisions. My son is 18 months and having his second surgery next month for exotropia and Browns syndrome. Thanks for sharing your story.

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  4. Your post touched my heart. We have just started with glasses for Grace (15 months) and our issues seem so minor now. Thank you for sharing your story. I will keep you and Mia in my thoughts.

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  5. You are an amazing woman Danielle and give yourself a big pat on the back for doing everything you are doing. It is just as hard on you if not harder than it is on Mia. Dont second guess your decisions, you are doing the absolute best you can to save your daughters vision. I really really feel for you and you are in my prayers as I am also going through vision issues with my little one so I do know what it’s like. I really have taken perfect vision for granted in my other two children and have come to realise over time how unbelievable complex the eyes and vision system are. However these are great times we live in and I am sure as technology and medical procedures advance over time Mia will have even more opportunities to improve her vision and she will thank you for all your hard work. I also completely understand you thinking why her and wanting to take it yourself I feel the same but I have also learned it is not in your control and you cant blame yourself. Take care and remember you are doing an awesome job.

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  6. Please don’t avoid us. I have been avoiding posting here more because I have been so depressed lately about my children’s vision. Hearing your daughters struggles made me realize tonight that we need to support each other more. You are doing an amazing job and your daughter is so very lucky to have you.

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  7. I second that. I was in tears today and could not hold it in . I basically was in floods of tears when my husband came home from work and let it all out to him. I felt so bad that there are so many many worse things and although I know this, some days are just harder than others. So yes, lets support each other and be here for each other, even if it is to say how hard it is some days or how upsetting it is. Although we are all trying to be positive and doing ALL we can for our precious children we are human and that is ok too. It’s ok to cry xxxx

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    • Thank you for this site! I have been trying for 8 weeks to find others going through this journey! My daughter was diagnosed at 3 weeks with a cataract in her left eye. I have felt overwhelmed and alone…my husband, the wonderful man he is, refuses to consider that his little girl will be anything but ok. My momma’s heart however has a harder time. I tell my beautiful girl how sorry I am to patch her, but I do it because of my love for her. When people stare at her while she is patched, I just quietly tell her and her sister it’s because they have never seen such beautiful girls…Thank you for your post. Finally…I am not alone.

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      • Ansley’s Mom, I’m so glad you’ve found us! Please keep us updated on how you and your daughter are doing, it sounds like you are doing a fantastic job with both of your daughters. Best to you!

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  8. Thank you for all the nice comments and word of encouragement. It is so true that we need to support each other. It gets so frustrating at times and it makes you feel so much better when you are able to speak with other parents that can relate. My husband is always so optimistic, yet he is the first one to remove her occlusion lens or say “that’s enough for today”. Most mothers that I talk to that are dealing with contacts and patching always tell me that their husbands give in. I know this is not the case with all fathers, but I find a lot of mothers dealing with similar situations. Maybe it’s part of their instincts or nature, the knight in shinning armor trying to make everything better, the savior. Mothers feel just as bad, but we know in needs to be done, no matter how heartbreaking.
    It feels like a load has been lifted off me shoulders when I can speak with others parents going through the same emotions, and guilt and denial. Not that I wish this upon any parents, it just good finding other people that can relate.

    Thank you for your support, you are all very strong parents. We are all doing what is best for our children, no matter how hard, how tiring or how painful that treatment might be.

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  9. I have finally reached out today to find some support from other parents who are dealing with cataracts and glaucoma. My daughter was born July 20th 2010 and at 2 weeks old we found out she had bi lateral cateracts. My husband was also born with cataracts. She had hers removed at 4 and 5 weeks and has been wearing contacts ever since. Since then she has contracted glaucoma in her right eye and has had 2 laser surgeries neither with success. We are now facing a tube implant which has all kinds of complications with a baby so small. I am a mess!!

    What I wanted to let you know was that they waited to remove my husbands cataracts until they were fully formed. This was 30 years ago when he was 4. Because they waited, and my husband essentially went blind, the muscle that controls the eye from shaking didn’t develope so now his vision problems are from the shaking not the cataract removal. On the other side because they waited he never contracted glaucoma which is a side effect of removing the cataracts at such a young age.

    I don’t know which one is better. I hope we can get the glaucoma under control with the drops but I look at her eye and it seems swollen and hard. I have a doctors appointment tomorrow. Lets Pray~~~~

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    • Natalie, thank you for reaching out and sharing your story. That is so much for a little girl to go through, and I can only imagine just how hard it is for you as her parents to deal with all of this. Please keep us updated. Your whole family is in my prayers and thoughts.

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    • Natalie,
      I would love to hear how your little girl is going. My son is 18 months old now and had his cataracts out at 6 weeks of age. he now has glaucoma in both eyes and we go back next week after being on drops for 2 weeks to see if he needs surgery.
      I see this post was a good 10 months ago so I am just thinking of you guys and seeing how you are all going.
      Hope alls well xo

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  10. Thank you so much for posting your story. I have poured over the internet incessantly looking for other people who also have children with cataracts. Please now that you did do the right thing and your pretty princess will not remember how difficult this time was. We are in the process of struggling with the same decisions. Our 20 month old was diagnosed with a unilateral cataract and has since been on a glasses and patching regimen. They are taking the wait and see approach as she is able to see (1 card difference in the Teller Acuity) but they are not sure how well. She will be going for an exam under anesthesia in 2 months. I wonder everyday if I should have the surgery or not because I do not want to wait and risk it however after reading your story you are giving me hope for the correct decision in the future. As your daughter may or may not regain full vision just know that she will do just fine with one eye. I know several people who do not have vision in one eye and you would never know the difference. They all drive and function completely normal. I know this may not be consolation now but do not give up hope. This will make you a stronger person and you will have an amazing bond with your beautiful daughter. Keep strong 🙂

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  11. You are really in a very difficult situation. Seeing your daughter in such situation is surely hurting you but be strong. Actually, I admire you daughter’s strength. At at very young age she is already a fighter her experience taught her well. Just be there for her and she will be stronger.

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