Comments on: your stories – cataracts

By: kavitha

kavitha — Fri, 04 Mar 2011 05:30:46 +0000

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

By: Danielle

Danielle — Sun, 27 Jun 2010 03:27:14 +0000

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

By: Ansley's Momma

Ansley's Momma — Wed, 12 May 2010 20:13:47 +0000

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!!!

By: Danielle

Danielle — Fri, 10 Jul 2009 06:16:34 +0000

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

By: Ann Z

Ann Z — Sat, 20 Jun 2009 03:21:40 +0000

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.

By: Christina

Christina — Sat, 20 Jun 2009 03:14:00 +0000

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

By: Danielle

Danielle — Wed, 11 Mar 2009 17:49:23 +0000

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)

By: Renee

Renee — Tue, 10 Mar 2009 09:00:41 +0000

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.

By: occluding lens for patching « little four eyes

occluding lens for patching « little four eyes — Thu, 19 Feb 2009 19:54:17 +0000

[...] Mia, had a cataract in one eye. If you’re new, you may also want to read Mia’s story and update. – Ann [...]

By: veronica

veronica — Tue, 20 Jan 2009 21:45:54 +0000

Hi I’m veronica a mother of a. beautiful babby girl. Named .adeline