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

By: Lauren

Lauren — Fri, 17 Dec 2010 09:02:18 +0000

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

By: Pete

Pete — Tue, 26 Oct 2010 06:46:15 +0000

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.

By: Ann Z

Ann Z — Wed, 12 May 2010 03:02:03 +0000

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!

By: Ansley's Mom

Ansley's Mom — Wed, 12 May 2010 02:57:43 +0000

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.

By: Kristy

Kristy — Thu, 18 Feb 2010 20:08:20 +0000

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

By: Ann Z

Ann Z — Tue, 16 Feb 2010 21:17:08 +0000

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.

By: Natalie

Natalie — Tue, 16 Feb 2010 20:57:17 +0000

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~~~~

By: Danielle

Danielle — Mon, 15 Feb 2010 16:08:15 +0000

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.

By: ingrid

ingrid — Mon, 15 Feb 2010 08:14:47 +0000

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

By: Amomofelly

Amomofelly — Mon, 15 Feb 2010 04:36:58 +0000

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.