Familial infant cataracts

Carolyn - posted 5 days ago

Hi, My son was diagnosed with congentital cataract in one eye when he was 15 months old. We were told that it is too late to correct it at this age as the visual pathways to his brain have never developed and it is too late for them to develop now. Eventually (after google-ing) we found someone who said to check old photos for red eye reflex to make sure he had it since birth and found from his photos that he didn't develop it until he was 5 months. We were still told this would make no difference and that he would have lost any ability to see during the ensuing 10 months. He is now 4 yrs old and we are sure he can see simple colours and shapes through his cataracted eye. Is it normal to see this much through a cataract? Does this mean we can improve on his sight as he does have the visual pathway to the brain? Has anyone out there discovered a cataract too late for the normal surgery ( it must be corrected in the first 3 months to have any success) and what have they done about it? We had given up hope but want to make sure we have investigated every avenue now that we are sure he can see a little through it. Has anyone been in a simalar situation?

Janece - posted on 01/18/2013

. My daughter was born with Bilateral Congenital Cataracts. She was diagnosed right after delivery. Her first surgery was at 2 weeks old and second at 3 weeks old. She received her first pair of contacts at 4 weeks old. She is now an active happy 6 1/2 years old. We have gone through MANY pairs of contacts and reading glasses. She is going to have the artificial lenses put in this summer. I myself had cataracts at the age of 5, back in the 80's my mom was told that it was due to her being exposed to Measles while pregnant... which with lots of research can be true but since my little angel came out with them, we have now discovered it is hereditary. We waited and put off having another child due to the 50/50 chance of it happening again. We just found out that I am 7 weeks pregnant. We do have some fear about having to go through all of this with a new baby. But I think that since we have already been through it once we are able to face it. I hope it is a little easier when you are looking out for it rather than the shocking news like it was with my daughter. I am so thankful that this site, it is nice to hear other people’s stories that have been through the same experience

Aimee - posted on 09/29/2012

Hi everyone,

Personally I never realised how many people had been through similar experiences to me, my son was born with a cataract in his right eye. We still have no idea how or why he had it, I have been told that it may have Ben caused by some anti biotics I was prescribed when pregnant. Had any one else got any further with knowing how they are caused? My son had surgery at 5 weeks, it was very daunting for me but he was very well looked after. He had further surgery as his eye had become infected after the lens had been removed but he came through well. Shortly afterwards he was diagnosed with glaucoma as a side effect from the surgery, we was told this could happen and his pressure was always hard to maintain so I prepared for it. He has had over 20 anaesthetics and many surgeries from laser to having a tube fitted in the back of his eye to control the pressure. However I'm not saying this to scare people, my son is now blind in his right eye and will forever have to be monitored for his pressure, but I would not change him for the world, he calls his eye that 'doesn't work' his 'magic eye'. The treatment has made his right eye brown when he left is blue but he just sees this as making him extra special, I felt my world crumble down when my baby wasn't born 'perfect' but now he's perfect and extra special and you wouldn't believe how it hasn't effected him at all. He has to have further surgery in the future but he understands why, if anyone has any questions or stories they can share with me, my son is now 4 and I'm only just finding out about other children the same as my little boy

Aimee x

Sheryl - posted on 09/27/2012

Hi Joan

I know this is tough to take in when you only want what is best for your child... My son had bilateral conginetal cataract... Did your son saw a little bit growing up like...he would stare at something then pick it up? If he did that's a good sign...It means that he's brain acknowledge signals from the eye... Glasses are not so great because the glasses can go up to +20 only... After my son's surgery I force him to put his glasses on but he couldnt see great with it and it wouldnt stay on. (3 months old) After 2 weeks of surgery for him we insert contact lens...Contact lens is the best way to at least see and train his eyes again...his first prescription was +32 now it's +28...He is one year old now....

Joan - posted on 09/27/2012

Hi, my son had bilateral congenital cataract but we did not noticed it until he is 3.5 months old. He had it removed a week later on his left eye and the right one a week after that. Now he has been prescribed with a really thick glasses. He has it for about 4 days now, however I am not sure whether he is able to focus with it or not. I am also very worried that he is not able to regain the use of his eyes. Anyone has any experience with this. Also, what can I do to help him regain the use of his sight. Thanks.

Sheryl - posted on 12/07/2011

What do you use for solution for contacts for overnight? rewetting drops with contacts in?

Fea - posted on 12/04/2011

Hi Sheryl,
We waited two weeks healing time before beginning contacts. To be honest, I had high hopes. I bought new toys and books in hopes of a new found interest. Now that I know more about "normal" vision development, I realize that even babies without visual impairments don't see that great when so young.
She did development nystagmus, strabismus and amblyopia. She has had surgery to repair these, but not much success. We are looking at another surgery in a month or so.
We have a school here for 0-3 blind and visually impaired kiddos. She also receives OT and speech in our home.
Good luck!

Kelsey - posted on 12/04/2011

My son is 10 wks & was born with a congenital cataract in his left eye. He had surgery 3 wks ago & now wears a contact lense. I could really use a few friends who know what I'm going through! Please, anyone, feel free to message me or

email me..khstrickland2510@yahoo.com.

Sheryl - posted on 11/06/2011

Hi Fea,
Reading your post, so your little one had bilateral conginetal surgery when she was 3 months...After the surgery, how long after the did you put contacts in? did she see after the surgery or after the contacts were in? Did she had a bit of nystagmus? And where do you go for the vision theraphy? Thanks again for responding to my post and i'm really glad your daughter is doing well....

Fea - posted on 11/01/2011

I insert hard lens contacts everyday. We have a song and special place, so she knows what is about to happen.She rarely cries or resists anymore.

Initially, the prescription/fit changed quite a bit. In the beginning, I was calling every week because the contacts would get "lost" in her eye and occasionally pop out. Now that she is 18 months, and has been wearing contacts for 15 months, we have quite a good routine down. She needs new contacts about every 3-4 months. Additionally, because I kept mixing up her contacts (and because her natural eye color is dark), one contact is blue and the other is green. This difference is not apparent when wearing and has helped.

It's a tough journey, but it does get easier. My daughter and I both cried while putting in and taking out her contacts. I was so sad for her and worried that I was hurting her. Now, I am a pro and I am faster then the dr's at putting them in and taking them out.

What is terrifying now, will just become part of your routine. Modern science is amazing.

We wish you well.

Catherine - posted on 10/30/2011

My daughters contact can stay in for anything up to 4 months she has never worn glasses but I've been doing patching since she was 5 weeks old she's now 3 1/2 and the strength of her lens has went from a +32 to a +28 she only had cataracts in her right eye. And has never worn glasses always contacts

Sheryl - posted on 10/30/2011

My son will undergo cataract surgery next week for both eyes. Did you have to insert contacts everyday or glasses? How often does the power of contacts or glasses get change?

Fea - posted on 10/07/2011

My little love is 18 months old and was born with bilateral congenital cataracts. She had both lens removed at 3 months of age. She has worn aphakic contacts ever since. We attend therapies 3x's /wk. Thankfully, we have seen an improvement. Her vision has improved from 20/270 to 20/130. However, I am disheartened about what to expect. I hope to connect with other parent(s) who might give insight.
LOVE!

Catherine - posted on 07/02/2011

My little girl was born with cataracts along with hirschsprungs by 5 weeks old she had 30cm of her bowel removed and her cataract removed which was sitting in the middle of her pupil .Her right pupil is deformed looks like a black hole that doesnt dilate with light or darkness she has been wearing a contact lens since she was 5 weeks old and is now 3 wears a patch for 7 hrs a day and seems to be doing pretty well (apart from this week due to conjuctivtis ) but she takes everything in her stride

Virginia - posted on 06/04/2011

So glad to have found this group! My 2 year old Toby was born with bilateral cataracts and had two surgeries before 3 weeks to remove lenses. He has been in contacts since 4 weeks, sometimes with glasses over top, and has glasses for water activities, before bed, etc. Fortunately, we live in the same town as his specialists, and he gets frequent care. Things seem to be going very well so far. My husband was born with cataracts, but our first son was not, so we had quite a surprise with Toby. He is doing really well and tolerates contacts extremely well, and now I've gotten over my fear of them as well. Down the road we might do implants; I'm interested in experiences with those. Also bifocals. Toby is getting to the age where one focal setting may not be enough, though he is doing amazingly well, thank goodness. Looking back at how terrified I was in the early days, I feel so much better now. But, we are still leRnin and feeling our way through things. Having mamas with older kids who have had similar experiences is beyond invaluable, thank you for this community!

Michelle - posted on 04/10/2011

We are in Nebraska. I don't know anyone else in our city that has a child with this exact condition, although I know there have to be some. I've had people in the vision industry tell me "it's not so bad" and "your daughter is doing great", but honestly it's still hard to accept it when no one seems to recognize the challenges it creates for my daughter's everyday life. She handles it with grace, but still...

Maria - posted on 04/02/2011

Where do u live Michelle.... I also feel alone in this !!!!!

Michelle - posted on 01/15/2011

Jayani: My daughter got contacts at 5 months -- she would rub them out about once or twice a month at least for the first year. They are so expensive ($200 US each). Now, she is 4 years and she rubs them out about every two months. It gets easier. It was not a problem putting them in -- taking them out takes more work. She doesn't love that part, but she is getting used to it now. We got her the bifocal glasses with the flexible band around the back of her ears -- that really helped her keep them on. You can do it! The alternative is very poor vision, so keep going. No one tells you this can happen to your child -- it's still a grieving process to realize your child has low vision. We all understand the frustrations.

Jayani - posted on 01/08/2011

Hi Lisa
I am not from the uk but Australia. My son 5 months was operated on two days ago. He is our first baby and we are still in shock.
I was wondering if you could share your experience of what happens after the surgery and did your babies wear contact lenses? How difficult was it. I know that's the only way he will be able to see so we have to do it.
Please let me know if you would like to chat to me... I would really appreciate it.
Thanks
Jayani

Jayani - posted on 01/08/2011

Hi there... My son was diagnosed with bilateralncataract a few days ago and they didnthe surgery. They say now only the hard road starts.
I am dreadng putting contacts in him at such a young age. Was it so hard. ? Are the doctors saying that your babies vision will improve with time?
Please I am looking for someone to share my anxiety.
Thanks
Jayani

Michelle - posted on 01/03/2011

Finding this site is such a relief! My daughter, now age 4, had bilateral cataracts removed at 5 months of age. She's been wearing contacts and bifocal glasses ever since. We've been patching for about 2 years (at first, two hours a day, then 90 minutes, and now 60 minutes a day). So far, no luck. The lazy eye won't go away. She's a trooper though! She's learning to read (enlarged materials). Depth perception is a problem, but otherwise there are days where I honestly forget she has a vision impairment because she does so well. So much better than the doom-and-gloom the doctors told us about when they diagnosed her. Her distance vision is 20/40. Near vision of course needs work. Glad to know there are other moms out there -- in our city I feel all alone with this.

Maria - posted on 05/14/2010

omg finally i found a site that i can relate to...my daughter hailey is now 4 and born with congenital cataract in her right eye...to make a long story short she has had 5surgeries to that eye and now wears a contact and glasses with a bifocal lense on the one side..makes her look so smart ...patches still for 4hours a day ....and because she got glaucoma from the surgeries she takes two diff eye drops a day (xalatan and cosopt)...what id love to know because there are moms out there with older children is...hailey is very cautious when she tries things like getting out of the car ...jumping....her depth perception the doctor said would be an issue for her....he said it's common...id love to hear from other moms out there...i want my daughter to be able to do anything other kids do out there..i dont want boundaries for her in this aspect.....i want her to be able to drive and do sports anything...please let me know from ur knowledge and experience...thank u so much!!!!





p.s. she has been wearing glasses since she was 5weeks old and started patching soon after that....the glasses werent very attractive and to be honest i got alot of stares and it was a hard time for me and my husband (more for me) people pointing and staring.....it's not even noticable when i take her out now patched but i still get atleast one that makes it like she had some horrible disease..id love to hear how other mom's dealt or is still dealing with this .....i try to keep the patching for home time now .

Jenni - posted on 02/17/2010

I am so pleased to have found this site!! I really have felt so alone and scared since hearing the news that my daughter (now 3) had congenital cataracts in both eyes. My husband has them but we really thought it had not been carried on in the genes as our son (age 6) was not diagnosed with them at birth. Our little girl had her first surgery at 3 months to remove and immediately implant a lense in the left eye - a month later the right eye was done. My goodness what a terribly anxious time this was for us. A month later she had a third surgery as one of the lenses had "stuck". She has been in hospital a few times for eye checks as she was too young for it to be done in the Doc's office.Since then we had our son tested and he also has them but they are really small and that is why it was not picked up at birth. The opthalmologist has decided not to operate and to wait till he is a bit older. They both wear glasses! My daughter has had months and months of wearing patches. But who cares they both look so cute. It is really such a wonder what the Doctors can do nowadays. Thanks everyone yours stories have really helped.

Cassandra - posted on 01/05/2010

My daughter just turned 7 last month she was born with cataracts in both eyes, she got it from her father's side, him and his father were also born with cataracts, she had her first surgery when she was 1 month old and the next a week later. She has been wearing glasses since she was 2 months old. She had two more surgeries a few months later to remove scar tissue then one to try to help with her lazy eye and more recently we were finally going to do the implant lenses when they discovered she has glaucoma, and has since had one surgery for the glaucoma, I wish she could get the implant lenses but her doctor feels that since her vision is finally where if she were 16 she could get a license that we shouldn't do the lenses anymore and do two unnecessary surgeries and risk making her vision worse. Now she is on 4 eye drops one to dilate her pupils b/c they're so small and 3 for the glaucoma doing drops night and day. IT has been a rough road but finally her glaucoma pressure is under control thanks to the surgery and drops and have finally been able to lower the check ups from every 3 months to every 6 months which is a huge relief as her doctor is a littler over an hour and a half away. Also I am happy to say despite everything she is the BEST reader in her class and is already at the level she should be at the end of the school year. So for those with babies dealing with this I just want to add one thing for you...this may be a long and bumpy road but with proper care by a good doctor it can and will get easier! If anyone has questions or needs an ear of someone who has been there feel free to contact me!

Cristy - posted on 11/21/2009

Olivia's IOL surgery worked. Just glasses now and patch YAY!!

Sarah - posted on 11/19/2009

Melissa Haas Your story sounds a lot like mine. I too was born with cataracts (as i mentioned before) but wasn't aware that i could pass it onto my children, as it does not run anywhere else in my family.
My son's cataracts were picked up on my 18 week ultrasound scan, i was so shocked, but i think now that it was so good to find out so early on. He had his surgery at 5 weeks and now see's almost the same as other kids his age (4) but with very thick glasses. He will have surgery some time next year on one of his eye's for an IOL, then the other eye will be done some time down the track.
I am now pregnant with identical twins, and am aware of the fact that there is a 50/50 chance that they too will be born with the cataracts, the scans so far have been inconclusive.
As far as i am aware the earlier the surgery is done, the better the sight for the child. Mine wasn't done till i was 3 months plus old, and my vision is quite impared. I see ok from one eye, but the other is just along for the ride.lol
I too tried contacts for my son, but he kept losing them, we found glasses were a better option for him. he has loved them since the day he got them at 6 weeks of age.

Cristy - posted on 11/01/2009

Hello. My Daughter Olivia is 20 months now. She has had 5 surgeries now. She has had two cataracts removed and just had her implant lens put in. The caught this at birth so we started right away. They removed first one when she was 10 wks old, and she got a secondary one right before her first birthday. So we did it again. She wore a contact lens that i had to put in and take out everyday until about July of this year. They keep falling out. Now we are just ready to start glasses and patching so she can have alittle bit of rest with this all.

Melissa - posted on 09/05/2009

Hello all...Im so glad to have found this community. I was born w/ congential cataracts. When I was pregnant w/ my son I never thought "could I pass this to him"? Well on March 4, 2009 my handsome man came into our world. Not even 10 hrs post delivery the docs & nurses tell me "your son has cataracts, in both of his eyes". My emmediate reaction was to cry & tell myself it is all my fault. I knew it wasnt but I was worried my son may never see me or his loving family. My son had his cataracts removed at AI dupont hospital when he was just 2 weeks old. He is 6 months old now & wears a bifocial lense glasses. My husband & I are grateful for everything our doctor has told us. Our son is right on track now & I wouldnt change any of our decision making. Yes I still worry to what if's & if he will be made fun of, when he gets older we have the option for more surgery & contact lenses in the future.

Cathy - posted on 08/04/2009

Thanks for your advice. I just still stress on it.. I just wish she really could do more without me worrying about her stressing out her heart or being made fun of because she really cant see well. We will see how 1st grade turns out this year.

Lisa - posted on 07/19/2009

I am not familiar with ReZoom lenses. I am sure there are many different kinds out there now. I feel that if the doctors felt you needed to remove the caratacts then that was the right thing to do, It is scary, wondering about the future, but leaving the cataracts in could have left her vision permanently impaired at that level of vision. I am not a doc. I am just going by what our docs. have said to us. It's like the brain gets "used" to only seeing at a certain level and can "shut off" an eye in favor of another one. That is what happened to myself. I always joke around that the other eye is there to complete my face because it doesn't seem to do much with my seeing compared to the other one. My son and I both wear bifocal glasses. I had him in progressive's for awhile, because I didn't want him to get made fun of for bifocals, but the doc said he needs the lines so he can learn where to place his eyes for seeing up close or far away. I am so glad I had the surgery for him because without it his specialist said he would have been completely blind by your daughters age now. I just can't imagine that! We have had many surgeries and he has developed other issues that are not related to the surgery but probably the damage by the cataracts obstruction of vision, but he is able to play soccer really well...baseball not so much. I just wanted him to try everything at least once. The sky is the limit as long as you let it be. Don't worry, I am sure you made a good decision on the lens replacement. Imagine her life without the new crystal clear lenses for a moment and I am sure you will reassure yourself of your decision.

Cathy - posted on 07/16/2009

My 6 year old daughter underwent 3 surgeries under the age of 2 to help fix her congential heart deformation. Because of that we overlooked her eyesight untill two years ago. She finally had cataracts removed in both eyes and she was implanted with ReZoom lenses. Do any of you have any infromation on these lenses? She does wear glasses with bi-focals. I really want to know if we did the right thing or what is the norm after the cataracts are removed.

Thank you

Cathy in Southern Cali

Tami - posted on 07/15/2009

Wow, that's great that she is so active. My daughter has sight in only one eye. Her doctor won't allow her to play any sports where the ball is coming toward her. She gets hit in the head on her non-sighted side and has had a whiplash injury once from it.

Sarah - posted on 03/22/2009

Hi.. i have a son who is almost 4 now, who was born with cataracts just as i was. He is doing very well, he had his op when he was 5 weeks old, and can see very well with his glasses on. He has had some problems with the pressure in his eye, which was controlled with an operation to the right eye just last year, and he also just had another procedure done about 3 weeks ago to the lens capsule. We are waiting for him to get a little older for IOL's :)

Jessica - posted on 03/13/2009

Oh my goodness!  I am so happy to have found this site.  When the doctors give you the odds without anyone else in the family having this to be 1 in 100,000 it makes a person scared.  We have had the best care so far.  Our son is only 4 months and just had the surgery a week ago but I am so concerned about the future and the unknown.  We have been told we will have to have another surgery in the future but not for several years.  His glasses are on their way.  Good luck to all of you and hoping more people will find this and feel good knowing there are others out there

Marianne - posted on 01/13/2009

Hello! I am really glad to have found this community! My daughter is 13 now and was born w/ cataracts. I will attempt to post a picture of her. I would love to hear about your experiences w/ this as of course I am curious about her life as she becomes an adult. So far...she does very well. She has glasses but in the process of getting contacts....she does everything and more that anyone else her age does! She loves to snowmobile and ride her ATV! She also is involved in Soccer, Volleyball and Gymnastics.....I really look forward to hearing from you and hopefully there are more people out there that will find this and join.