Eyes & Vision

Updated on August 12, 2010
B.P. asks from Lisle, IL
11 answers

My 3 week old infant has been diagnosed with Congenital Cataracts. I am being told by the doctors that this is cured by removing the lens in both eyes while under general anesthesia before the age of 3 months. My husband and I are still just trying to get our heads wrapped around this and I are very apprehensive about about the whole thing. Has anyone been through this before or know of anyone who's infant has had this surgery? Any help, input or advice would be appreciated. Thanks so much.

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So What Happened?

Hi Everyone!

Wow, thank you so much for the warm thoughts, prayers and advice. I am glad to hear that others have been through this and the surgeries went well. We are still waiting on some blood work to come back to us. I am holding out hope that this might be a metabolic problem that can be cured through diet or medications but I think I am just being hopeful at this point. I will take all of your recommendations in to consideration for second opinions and do what is needed for my little girl to have the best start in life as possible. I have looked it up on the web, talked with her doctors and as scary as it is, it seems treatable if caught early as in our case. Thank you again and I welcome more responses or advice if anyone else has any.

B.

More Answers

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K.

answers from Chicago on

I just wanted to add one more note about why getting this done early is important... babies are born with many connections in their brain. As connections get reinforced or not used, they either become stronger or disappear altogether. So if she is not using her eyes early on, the brain begins to lose the connection that deals with visual information. They've done this experiment on animals where they tape their eyes shut as babies and then open them later in life - the animals still don't use their eyes because their brain is now wired to ignore them.

I don't say this to scare you, just to let you know that even though it's tough to think about your beautiful baby having surgery so young, it's the best thing for them to do. I'm sure everything will be fine and we'll keep you and your family in our prayers.

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M.H.

answers from Chicago on

Hi B.,
Not just one but two of my young cousins were both born with cataracts ages 13 & 4 (unfortunately they also have a rare genetic syndrome called Lowes). They both went through with the surgery, I wish I had more details of the procedure but I don't. I do know that they have both worn contacts & both wear glasses & can see fine with those. They were treated at a great hospital; Children's Memorial. Best of luck to you two & your little one!

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F.J.

answers from Chicago on

I too have never heard of it but I do have bumps just thinking about having to make such a decision!! Get lots of recommendations Good Luck and I too will keep you in my prayers!!

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M.H.

answers from Chicago on

I have heard of it. They will put an artificial lens in its place and I think your child should still have normal vision. What hospital/ophthalmologist will you be working with? Will you be at Children's? I know in adults they can sometimes break up the cataract with a laser as opposed to an implant, I don't know if that is an option for congetinal ones, however I would recommend for your own peace of mind getting a second opinion. I used to work with some really good ophthalmologists, I can give you some names if you need them.

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S.

answers from Chicago on

I have no advise but just wanted to let you know, I will include your little one in my prayers.

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B.

answers from Chicago on

B.,

I have an incredible peds eye doctor. He is through Lutheran General Hospital and he is extremely well regarded in his profession. Email me at [email protected]____.com and I will forward all the information if you are interested in a second opinion or surgury options.

His practice floored me and he really helped my son through a rough time. He works with infants, children with special needs and children who are developmentally on track.

God Bless your little one. I am sure this is a difficult time for your family. Take Care.

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M.M.

answers from Chicago on

B.-

My brother had them. He didn't get them removed until he was in his 20's mostly because we didn't realize he had them. I don't know the degree to which your baby has them, but if it's not necessary right away you might be able to wait.

M.

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J.W.

answers from Chicago on

Sorry I didn't see this sooner. I am a relative newbie to Mamasource. I wanted to let you know that my younger brother (now 37 years old) had congenital cataracts when he was born. It was a tough road for our family to hoe but he's now a successful, well-adjusted adult - graduate education, wife and two kids, homeowner, churchgoer, all that good stuff. Plus, I'm sure the techniques for eye surgery are about eleventy billion times more sophisticated now than they were three decades ago.

Hope this gives you a wee bit of hope. In the big picture, things will turn out right for your kiddo. Keep up the good work!

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J.N.

answers from Los Angeles on

When my son was 18 months old the opthamologist found that he had a cataract in his eye. It was big enough that within a week he had to have surgery to implant a lens. The surgery went very well. My son is now almost 3 years old and at his last appointment they were able to really test him since he is now verbal and can respond to the pictures they show him. He did pretty well. He does have to wear glasses and we still have to keep patching but the doctor said that the vision is about 20/25 when he uses both eyes. This was very stressful and scary for us since he was so young but the sooner they get it the better so that their brain continues to use both eyes. we went with Dr. J. Dunbar out of Loma LInda University. She came highly recommend from top pediatric opthamologists in San Diego. Good Luck.

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J.K.

answers from Chicago on

Dear B.,

I have a friend whose baby had this condition. Only in one eye, but not caught as early. She had vision loss in the affected eye as a result. Early treatment for a condition like this is extremely important. If your baby can't see, whether properly or at all, her brain will stop using her eyes so that even if you wait to fix the problem she could have permanent vision loss. I'm sure there is a lot of info out there on the internet. I would suggest going downtown to Children's Memorial -- you'll get the best of everything there, which is extra good when anesthesia is involved. Good luck!

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