your stories – cataracts

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

. . .

Mia, nearly 3 months old

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.

Danielle
mother to Alex and Mia

~~~

Read an update on Mia from Sept. 2008, and another post on Mia’s new occluding lens for patching from Feb. 2009

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21 responses to “your stories – cataracts

  1. thank you for writing this Danielle. I was almost in tears when I read the part about you looking into Mia’s eyes as you learned of her cataracts. I love your sense of perspective, and I love your husband’s response about her older brother being there for the teasing. Best of luck to all of you, I hope you stay and keep us updated.

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  2. That was absolutely wonderful, I, too, was in tears when I read your story- and could definitely feel your pain. Mia is absolutely adorable, and just know that you did the best that you knew at the time. You are so right about the hospital humbling us, I remember feeling this way too.
    Welcome to the board- Great post!!

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  3. Danielle – thanks for sharing your story with us.

    You mentioned about Mia’s glasses falling off when she moves her head. I saw in the photo gallery that she has Miraflex glasses. My daughter has that brand too. To keep her glasses on and have it be fully adjustable, I use soft elastic lace from the fabric store. (I get rolls of it at a time.) I insert the lace through each hole at the end of the glasses (behind the ear/head) so I can tie the elastic as tight or loose as needed on each side of the glasses. There is no marking or anything that will pinch/hurt the head. Hope this helps. Also, I bought the patch that fits over the glasses, and it works fairly well. They are Luxeye Eye Patches sold through Orthopad USA.

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  4. What a wonderful post! I am encouraged that you were able to have an IOL implanted in Mia’s eye. This will certainly improve the chances of success for her. Best of luck!!

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  5. Thank you for all of your responses and support. Sorry I have taken so long to respond, I just returned to work from my maternity leave and I am just trying to get back into a routine. It’s tough finding time to use the computer with my 2 little ones, they have suddenly switched routines and don’t want to nap at the same time.

    Motherhoodandpotatoes – Thank you for the suggestion, her glasses have a strap on the back and this does not seem to help. The problem we are running into is when she is laying down and moves her head, the glasses slide to the side and usually end up in her mouth. I will definitely try a strap that we can tighten, this might help us out. One of the nurses at her doctor’s office suggested we place a knit hat on her head to keep her glasses on; I can’t imagine her wearing a knit hat in August. Never mind the issues we are having with patching and glasses, and then adding a hat to the mix. Thanks for the suggestion.

    CSilverman, I was wondering why Mia’s aphakia eye does not have red eye in any of her pictures. I thought once the cataract was removed light would be able to reflect to the back of her eye. I keep forgetting to ask her doctor. If you look closely at her picture on this blog you can see that her left eye has red eye and her right does not. I have noticed this in all of her pictures that have red eye.

    Take care,
    Danielle

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  6. Hi Danielle,

    You sometimes don’t get a red reflex unless looking directly into the camera. I would also have your ophthalmologist:
    1. Check her muscle balance
    2. Check her retina

    Good luck!!

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  7. Hi there,

    It breaks my heart to see that your beautiful daughter has cataract at such a young age. I myself had ICLs implanted a couple of months ago for cosmetic reasons (I couldn’t have laser surgery as my corneas are too thin) and I am delighted as I no longer wear glasses. I used to have a prescription of -7 in both eye as well as astigmatism…

    The only concern is that the IOL can damage the cornea long-term and lead to blindness. I will now have to my my surgeon to check out my retina as well a full corneal scan once year. Just thought I would let you know…

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  8. Hi Danielle;
    After reading your post, i was wondering how would my life be changed if i had, 26 years ago, the same opportunities that Mia has now… i was born with the same problem, in the same eye, and had implanted IOL just with 16 years old (ten years ago, and had a normal life, no problems at all with the lens), but it didn´t help with amblyopia and strabismus. Last week i had my eye´s muscles oppered, knowing it would not help the function, just the appearence of it. I´m sure Mia will be great, and thankfull for your decision!
    Good luck!!

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  9. Pingback: update on Mia « little four eyes·

  10. Pingback: occluding lens for patching « little four eyes·

  11. Thanks for you story. I too cryed when reading this………….
    My son is 3 yrs old and today we where told that he has cataracts in both eyes. I cryed and had alot of the thoughts and feelings that you had also. I am so scared. We are waiting for a specialisst appt We live in New Zealand an hopefully will get one in two weeks. thanks for your story.

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  12. How is your son’s vision? He may have had cataracts since birth that were very small and not obstructing his vision. The cataracts may have progressed over the past 3 years to the point that they need to be removed, or they may still be small enough that they are not effecting his vision and he will need to be monitored to see if they progress. The one thing that is good about bilateral cataracts is that your sons eye are both obstructed and hopefully have similar vision which means you may not need to patch because his eyes are not competing with each other. Our daughter had a unilateral cataract which means her right eye never processed images. We have to force her right to begin seeing with patching. The human brain always favors the stronger eye and will eventually turn the bad eye off leading to amblyopia. Also, because your son is 3 years old, if he does need surgery he will most likely have IOL’s implanted in both eyes which means no contact lens. I have read about the success rate children have with IOL’s, it is still controversial if IOL’s are more beneficial in infants, however the success rate is high with children over 1. If your son has cataract extraction surgery he will have to wear bifocals. I read an article about multifocal IOL‘s, but they are not used in children. The IOL is to see far and the bifocals for close up. Mia will have to wear bifocals when she turn 2. I know this is a lot of information, and it is very overwhelming. There is not a day that goes by that I don’t think or worry about my daughters vision. However, I take it day by day and watch in amazement how well she is developing, even with minimal vision in her right eye. I do worry if I have made the right decisions and hope that everything we are doing will improve her vision. My father always tells me that you make the best decision you possibly can with the information you are given. You do what you can do and hope for he best. Our daughter is 9 months old and there are no developmental delays, she was delayed with following objects due to her nystagmus, however once she hit 4 months old she began following objects. It is truly amazing how children adapt.
    Please let me know if you have any questions or just want to talk. Please keep us updated with your sons progress.

    Danielle
    mother to Mia 9 months old (uni cataract, glaucoma, nystagmus)
    and Alex 2 years old (no vision problems)

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  13. Hi Danielle,

    Juz managed to find yr post. Wow, I can surely share yr sentiments then as that was what I felt too when the eye Dr confirmed that my son had bileteral cataracts when he was 3 mths old.

    My husband & I was stunned when we were first told the news plus the fact that the cataracts could also signify others underlying problems (ie. brain tumor) that my son cld be having. It was somehow so surreal (like a dream) when the eye Dr proceeded to contact the dept head of the cancer dept in one of the hospital here in Singapore immediately and told us to proceed straight to the hospital. Once there, we were given the VIP treatment, having being whisked off immediately to the paedictric cancer ward to meet the dept head. To my surprise, I couldn’t even cry then. Everything just happen so fast, it was like my heart had forgotten how to beat too.

    The half hour wait at the cancer ward was the hardest experience I ever had, but also one which I was most thankful for. The check came back with great results, my son was cleared of brain tumor (thank God for that!). It was confirmed that he was only having bileteral cataracts. With a somewhat relief heart, I was only able to realise the number of children in the cancer ward then, & my hubby & I left the ward with a much better understanding of what the parents of the children must have felt.

    We were told to visit the Eye Dr next & off we went, & the next piece of news wasn’t that great. We were told that my son needs immediate surgeries in both eyes to remove the lens, plus the fact that they don’t perform IOL here in Singapore for babies that are so young. So, my son had his 1st surgery on 26 dec (just a day after Christmas) & the 2nd one on 2 Jan (just a day after New Year). I remembered not having shed a tear from the day I was told the news until the very moment he was whisked off into the operation theater for his 1st surgery. Everything had happeened so fast. From the day we got the news to the day of his surgery was just a few days apart. The moment of truth only dawned on me there & then & the tears came freely after that. The number of times I cried after that? Uncountable… 🙂

    My son is 21 mths old now & I must say that he is doing GREAT! It’s such a joy now to know that he is able to see clearly now & my heart still flutters whenever he points to a bird, star or plane overhead & say “Mummy, look at the bird/star/plane!” excitely. Bec I know that everytime he does that, it is just a testamony that he is able to see clearly now 🙂

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    • Christina, I’m tearing up reading your story here. Thank you so much for sharing. I’ve added the picture you sent of your son to our photo gallery. I’m so happy to hear that he’s thriving and seeing clearly.

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  14. Hello Christina,

    Wow, what a wonderful story, it brought tears to my eyes. How is your son doing? I saw his picture and he is absolutely adorable. How is he with his glasses? Has he had any other eye problems? Please keep me posted.

    Danielle

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  15. I would love to hear how Mia is doing! My daughter had her cataract removed at 5w 1 day. We are currently placing a lens in daily and patching. I TOTALLY related to your story. Unlike you, none of my doctors noticed her cataract. As a nursing mother, I spent many hours looking in her eyes. I felt that her left eye just wasn’t right. Everyone I mentioned this too or had look at her eye, thought I was losing my mind! Even her doctors thought nothing of it. I finally had her doctor give me the name of a pediatric eye doctor. I called as I left the office and was able to get an appointment (due to a cancellation) the next day. If not, I would have had to wait for a month for an appointment. As I waited in the office alone (I told my husband not to come. It was probably nothing, right?), I felt so silly! I must be out of my mind. Nothing could possibly be wrong with this beautiful 4 week old baby. When the doctor said, “Your daughter has a cataract and needs surgery immediately.” my world stopped. The only thing I can relate that feeling to was when I was told my father had died.

    I was refered to a wonderful doctor who worked with the hospital to set up time to remove the cataract immediately. Within a week (after seeing a retina specialist at Emory), she had surgery and we had her contact a later. We started patching the day I met Dr. Lipsky.

    As a middle school teacher, I knew the teasing that can come from patching and being “different.” I too just wanted her to be normal and have it as easy as we do with her sister. Know what I found out? I found out what it is to be a true momma. It really is harder on us than the kids. I will do whatever I have to to make sure my daughter has EVERY chance to gain the best vision possible. She may not like me all the time for what has to be done, but she will know how much I love her!!!

    Your story has been a saving grace to me. Just to know that I am not alone in this battle. As I said earlier, I would love to learn more of the good and the bad of your journey up to today.

    Thank you for sharing!!!

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  16. Hello, sorry i am reading this a couple months after you posted. Mia is doing good, she had another surgery a few days ago; more tissue growth over her lens. This was her 11th time under anesthesia. She is doing great otherwise. We are back on a drops schedule, 4 drops, 1 ointment 10 times a day. Mia is so great she lays on the floor and holds the cap while I place her drops in, and then she helps me screw the cap back on the bottle. I hate that this is normal for her, but at the same time I am glad that she is willing to help mommy insert her drops. I know it’s very hard in the beginning, especially when you have another child. If you have any questions or just want to talk please send me an email dblight1@msn.com.

    Is your daughter bilateral or unilateral? Has she developed glaucoma?

    Danielle

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  17. Hi Danielle,
    I wonder what happend after that? cause My son is 4 months and a month ago he went throught cataract removal surgery.But Could not put in the IOL since then we just got his contact lens and he is been with the lens for the pass 1 week.

    I’m just wondering ?What are the best thing i should do for him?
    This week we should be starting with the patching exercise.
    I ‘m getting worried over his condition.
    If you share all your challenges that would give strength and guidance.

    I realy salute you for your courage and strength.

    Thanks.

    Reg
    Kavitha

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  18. hi danielle ,
    i was readin your story and cryin at the same time my wee boy was 3 when he had the cataract removal surgery done and it was the same i was on my owin when i got the news and i had to ring my husband and we got the loL as wel my wee boys was in the right eye and as u i went into the hospatl thinkin y my baby boy and came out thinkin ma the luckyest mother in the world my wee boy is 5 now and at school he is werein byvocals and patching every day from 4 to 5 hours readin ur story was like relevein my in and let me tel u i cryed i i would love to no more like how ur wee 1 is now best of luck to u and yours

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  19. Thank you sharing your story and giving brief information on cataracts. It will really helps to other parents to take care of their children eyes.

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