Reed – Unilateral Congenital Cataract

11-month-web

At Reed’s 6-month well check our pediatrician recommended we go see an ophthalmologist because his eyes were really crossing. We both figured it was a muscle problem given that there is a history of eye issues and lazy eye in both families. Little did we know the eye alignment was only half of the problem.  After seeing our initial ophthalmologist she got us in to see a pediatric ophthalmologist that same week. It was at our first appointment with the PO that Reed was diagnosed with a congenital unilateral cataract in his right eye. She also told us that he probably had the cataract when he was born but it wasn’t severe enough to show up on any tests and it had just gotten worse very recently.

post-surgery

To make our long story short (and to sum the events that unfolded in 7 days!), Reed had the cataract removed on October 30, 2012 at 7 months old at Lurie Children’s Hospital in Chicago. Reed did so well before and after his surgery. He was home resting with a shield and patch a few hours later.

Since his surgery, he has gone down 3 prescription strengths in his contact lens and patches for 2.5 hours a day. We take out his contact most nights. Reed now goes for checkups ever 2-3 months, which has been a nice break from every few weeks. Our doctors have all been very positive about his recovery and are making sure the necessary steps are taken for him to grow and thrive. His eyes still cross but they’re getting better.

pasta-web

It’s hard to believe that we’re coming up on 9 months since we started out on this adventure. His surgery (although the absolute scariest day of my life) seems like a distant memory. All those fears and what-ifs have calmed and are pretty quiet compared to that initial few days from diagnosis to surgery. At 16 months old, Reed is a vibrant and resilient toddler who loves the water, eating and playing outside. We of course have bad days when his contact irritates his eye or he rips off patch after patch until his skin is raw but the progress and hopes for the future make it all worth it.

pool-time-web

If I had to give advice to any parent going through this, it would be-take it one day at a time. None of this is easy but with a little practice and patience it will be ok.

I also invite you to checkout our family blog: http://theeclecticnest.wordpress.com

I do my best to document eye-related progress and our life in general.

patching-web

7 Comments

  • Carrie says:

    Interesting site – sharing always eases fears,
    and the unknown. Patience and understanding
    helps to clear the future. Thanks for sharing
    Love aunt Carrie

  • Erinmarie says:

    Thank you for sharing your story. My little Declan, 10 months old, is recovering surgery from a 100% cataract in his right eye. He had surgery two wks ago at Boston Childrens. It was literally discovered 36 hrs before surgery by his lung doctor. I was floored. He did great at surgery and after. Getting the drops in is hard and he gets so upset patching his good eye. We don’t have glasses yet so I am thinking it may get better when that happens.

    Best of luck with your little cutie!

    • reaserj@gmail.com says:

      Good luck and if you ever have any questions let me know. I love to help in any way. It does get better and the contact/glasses/patching are just a part of life now but Scott is such a wonderful kid! You should also join the congenital cataract facebook page and aphakic facebook page. They are great support groups for parents going through the same things.

  • Erika peguero says:

    I missed the today show about the toddler born with a congenital cataract,but my aunt had told me about it.I was able to read about the episode on-line and see pictures of the little boy.After reading about him and his mother it brought tears to my eyes.
    I have a 5 month old so ,who was born with a congenital cataract and had surgery at a month old to remove the cloudy lens.almost a month later he had needed a second surgery due to the fact scar tissue formed.I was devastated at the time.Today,he’s doing we’ll and wears a contact in his left eye.he needs to wear a patch every hour that he’s a month old.therefore,it must be worn for five hours right now.then the patching will increase to six hours.
    We have experienced a similar situation when my son had a patch on the same color as his skin and people were staring.so we been wearing the kid friendly colorful patches to bring less attention.
    I thank you for sharing your experiences because its nice to know we’re not alone.

  • Natasha says:

    Hi

    Thanks for posting this, my 21month old daughter goes to PMH in Perth in 2days to have her surgery & I must admit I am very anxious & not sure what to expect after the operation. It was nice to read your post.

    Kind regards

    Natasha

  • Meredith says:

    Hello,

    I have the same situation. I personally found my son’s cataract in his left eye when he was just three weeks old. I demaned to be seen the next day at Texas Childerns Hopsital and the next thing I knew he was having surgery at just 4 weeks of age.
    Currently, we are patching and wearing a contact which is incredibly difficult to put in and remove but we manage. I am just wondering what your experience has been wih the recovery of vision in your son’s bad eye? I am hopeful for the best outcome but I don’t know anyone else who has had this issue. My son, Everett is almost 4 months old. Can you please share some of your insight. Thank you so very much.

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