Anyone on here have a child born with Congenital Cataracts?

[Ninablue]

Hi, I'm new here and hoping to find some mums to talk to who are going through the same problems as me. We are struggling a little. My little girl was born with this condition and it was picked up at her 6 week check.She has had her lenses removed and wears contact lenses that have to be removed each evening and inserted every morning....She is almost four now and fighting back!!!!
Nina x

No personal experience to share. Sounds like a tough thing to deal with, but glad to hear she is fighting back. Bumping for you.

Hi,

my son was born with one cataract also picked up at 6 week check but i thought his eye looked a bit strange and cloudy beforehand.

He has had his lens removed and we have had years of eye patching and he now wears contact lens and glasses and we still patch every other day. He is now 5.

a bit different than having 2 cataracts thought i think. he has small issues with depth perception but so far seems mostly unaffected but time will tell.

Hows it going with your girl?

Hi, can't give advice, sorry, but bumping and watching this thread, we have just had this picked up today at 6-week check and was logging on to see if anything on here. We are now awaiting referral to specialist for next steps.

My DS is 3 and had them. They were only picked up in January when he had his eyes checked after having Encephalitis. They are towards his nose so aren't affecting his vision at the moment so the hospital don't want to remove them unnecessarily.

Ah fabulous Im so pleased to find a few of you...just going to pick twins up back later to answer your questions..x

Hello Jaykay, great to hear from you. She is doing ok, its been really really hard though. However, she is fighting me off now as sometimes doesnt want to wear her lenses,although she is ok at the moment. We have constructed a special contact lens bounce on the sofa once one goes in then she gets three more bounces when she lets me put the other one in. Our appointments at the clinic are getting harder as she just doesnt want to answer the consultants questions, thenwhen they try and put drops or dye in her eyes she literally looses it and we have ot pin her down to administer. But I have been assured that this is what does happen as she is asserting herself. I don't blame her really, although there is many a time im locked in the kitchen have a quiet cry. How are you getting on?

Hi Chrysanthamumm how are you feeling ? I remember the day the doctor told me that there was something not right at the 6 wk chk.Her twin was fine, she was always a sleepy baby and I wondered if there was something not right as she wouldnt open her eyes for long. You will be referred immediatley as they will prob want to remove the lenses asap. If you wish to email me privatley then please ask for my email address as I would have loved for someone to talk me through the first few weeks of this.But please ask me any questions about what to expect.
Nappyaddict, thats great that they havent covered his entire eye. How are you feling about this?

Nina xx

They said they've never seen them in that formation before and neither has the "expert" at Birmingham Children's Hospital so they want to keep an eye on them - pardon the pun - in case they do get bigger.

How old were all your children when they had their lenses removed?

Nappyaddict- I have girl/boy twins but only my daughter was diagnosed he is fine. She had her lenses removed at 8 or 9 wks its a bit of a blur. We at Leicester Royal and are really l;ucky to have an excellant consultant who specialises in this. When do you have to go back?

Hi Ninablue, thanks very much, would love to email you if you don't mind. I'm feeling pretty anxious about it all but trying to keep calm until we know more. My daughter is also a fairly sleepy baby which I had been starting to think about but hadn't considered this might be the problem, her elder sister was quite laid back at this stage as well.

Chrysanthamumm my email address is ninamaryuk @ yahoo . co . uk without the spaces of course! Look forward ot hearing from you then I can tell you all about my daughter and what happened x

That's interesting because DS was a very sleepy baby aswell. Is that a symptom?

Nappyaddict not sure if its a symptom, but I was told that its like looking through a cloud so I guess it wasnt worth her opening her eyes much. She didnt follow toys when I dangled them in front of her face whereas her brother was very interested. Whats your sons eyesight like? Does he wear glasses...?

Hi all my little girl Niamh was born with congenital bilateral cataracts 16 weeks ago she has had both her lenses removed at 3 and 4 weeks old, has developed glucoma in her right eye so had another operation to put a drain in as it was fluid causing the glucoma. It has been a rollercoaster ride, she has her first lenses appointment next week and I am really nervous. My email address is [email protected] would love to chat to anyone. I also have a little girl who is 2 mollie she has no problems with her sight at all. Look forward to hearing from you Tasha x

Hi, this is my first post so please excuse any errors. Not sure if anyone is still watching this thread. Ds2 5 weeks today was born with congenital cataracts. I also had them as did my brother and my mum but for some reason skipped both my neices and my ds1. DS2 is having his first lens removed next week and the second one the following week. I was wondering if anyone had any advice on how to get the tiny soft lenses in and out and what happens when they sleep? Should have asked the specialist at the time but was too busy taking it all in.

Twomanyvodkas, sorry I havent been back to check and see if anyone else had replied. would you like to email me on nina mary uk @ yahoo.co.uk (no spaces ) Then I can aswer any questions. My daughter wears hard lenses as I had a go with the soft lenses and found them, hard to remove. Email me Nina x

Niamh'm mom, will email you xx

Good morning

This is a long shot as this was over 10 years ago, but my 3 week old daughter has been diagnosed with congenital cataracts.

We are at the very early stages and awaiting surgery but it would be nice to hear how your children are all getting on and the long term effects.

Any advice really would be appreciated x