Any babies with Congenital Cataract(s) out there?

[indiemummy]

Hi, not sure if this is the right place to post this! My dd is 3 months and has been diagnosed with a congenital cataract in her right eye. The left eye appears normal. We now have to choose whether to go ahead with the surgery to remove the cataract, which will mean years of contact lenses, thick glasses, weekly visits to hospital, patching up to 7 hours a day, further surgery etc etc etc. And the best we can hope for in this eye is that she'll be able to distinguish shapes and read the top letter in the chart. Or if we just leave it, to save her all the above, she'll just be able to distinguish light and dark in that eye (but would need surgery to correct a squint and maybe to remove the cataract for cosmetic reasons later on). Fairly sure we are going to go ahead with the surgery, patching etc.

Just wondered whether anyone has had or is having a similar experience? Not sure how to feel about all of this. Keep telling myself it could all be so much worse. It's not the end of the world. But then I imagine my tiny baby on the operating table and I just know that will be horrific... And the patching... Oh and of course I feel sickeningly guilty.

We are in London so going to Moorfields. Oh and I am not on here that much but normally check back every couple of days. Anyone with any experience of this?

Thanks! x

[magso]

Hi Indie, could moorfields put you in touch with other parents who have been through this in the past? I think they have a family support service. Thankgoodness the left eye is normal.

[magsi]

Hi indiemummy.

Have no experience to offer you, but just wanted to reply. What a difficult dilema. At first reading your post and putting myself in your position, I thought I could not go ahead with the surgery, but then read that your daughter would have to have it later anyway to correct a squint and maybe to remove the cataract. Could the squint be corrected now together with the cataract. If so, this would mean you could get it all over and done with in one shot?. If not, I think I would be inclined to wait till later on. My ds1 has visual field problems in one eye and a squint. The squint is corrected by glasses which is not a problem and I would not consider anything more invasive to correct this as the glasses do the job. As for the question of cosmetic reasons, I would be inclined to let your daughter make that decision when she is older??. My ds1 gets along fine with glasses considering that one side of him is just a 'black void' from his site problems. I think they adapt well to what they are born with because they have never known anything else. We have also done patching and it is not as horrendus as it sounds. The main problem is them not pulling off the patch!

Anyway, really good luck with whatever you decide, but don't feel panicked and rushed to making a decision that you are not sure or have any doubts about, especially if the results are so uncertain x

[wannaBeWhateverIWannaBe]

hi, I'm on my way out the door now so can't write much.

My dh has congenital cateracts and had surgery to remove them when he was a baby. He did have to wear thick glasses when he was a child but now wears contact lenses.

Although he is registered partially sighted, his sight is such that he just has slightly worse vision than someone with normal sight iyswim. i.e. he doesn't have to use any kind of assisted technology at all, he simply just can't see quite well enough to drive a car. The cateracts were in both eyes so he had to have surgery on both as a child.

I have to go now but will check back later if you have any questions, or feel free to cat me

[crimplene]

Hi indiemummy. My DS is 9mo and has bilateral congenital cataracts. I asked the same question on Mumsnet a few months ago and all was quiet. But as only 1/10000 babies is born with cataracts it can be very hard to find others in the same position. I felt guilty too, although I'm over that. Now I'm very worried about making the right decisions as he's got to live with the consequences for the rest of his life.

We've just been told that they're growing and they will need to be removed and I'm going through the same horrors of the idea of my baby on the operating table - although when you think about it, it's an op they normally do under a local anaesthetic in adults - it's a really straightforward and very low risk. I think you're right to think about whether removing it is a good idea though - I'd say it depends how enthusiastic you're feeling about all the stress and fuss for a pretty uncertain result - most parents decide to go ahead though. But I sometimes wonder if it's a triumph of hope over experience? I guess you have to make a pretty quick decision at 3 mo? I'm feeling equally daunted by all the things we'll have to do.

There are two organisations that might be able to help: the National Blind Children's Society (NCBS) are in the UK and I've found them really helpful for general moral support and hand-holding. There isn't a UK support group for cataracts currently running - there was one called cat's eyes but it's shelved at the moment I think, but the Pediatric Glaucoma and Cataract Families Association (PGCFA)is a Canadian organisation that has a great website with some very useful articles and a supportive Yahoo Group (although dominated by Americans and issues with their health care systems). There is also a UK group called parents of visually impaired children (PVIC) which is very very busy and mostly about educational issues and campaigning, but can be very supportive, although most of the children have problems other than cataracts.

Most people who've been though this say that the patching is the worst as young kids hate it so much and the literature on unilateral cataracts seesm to paint a picture of pretty poor visual outcomes in general (but I don't know the stats as I'm trying to undertand about bilateral cataracts). They also say that you get used to the contacts fairly quickly, although I'm feeling most nervous about them.

The name of the PGCFA is also a heavy hint that one of the more horrble complications of this surgery, that you didn't mention, is that the eye may develop glaucoma (raised pressure in the eye) and this affects about 30% of eyes (some people will quote lower stats, but they tend to be from studies with short follow-ups). Your DD will need to be monitored for life for glaucoma, which is no big deal in older children and not painful, but sometimes (I don't know how often) it means that younger children have to be anaesthetised for the examination as they can't do it while they're wriggling. If glaucoma develops it's hard to treat and usually leads to blindness via lots of treatments and operations. I would ask about EUAs (examinatinos under anaesthtic) too.

The other option that you didn't mention and thet you could explore with the consultant is an IOL (Intra-ocular lens). It would reduce the thickeness of the glasses that your DD would wear in the long run. They haven't been used much on children under 2, but some surgeons are starting to do it on tiny babies (of course more experimental, outcome more uncertain). Moorfields has a fantastic reputation, I want to take DS there, but I can't get a referral at the moment, so you're definitely oging to the right place - Great Ormond St is the other place in London that's good with Paediatric Ophthalmology, so if you ever want a second opinion, that's the other possiblity.

If you want join the PGCFA yahoo group, I'll see you there!

[crimplene]

I just thought of a couple more things that I should mention: it seems as though bilateral cataracts would be more serious than unilateral cataracts, but the visual outcome on the affected eye usually seems to be worse in unilateral cases, just because so much of vision is about brain development and the baby has to just learn to use the vision they've got in bilateral cases. Even with careful patching, they often end up favouring their good eye in unilateral cases. Of course overall vision is generally better as the good eye compensates very well with the main loss being binocular vision.

There's also another couple of support groups that might be worth a try: 'Look' is the National Federation of Families with Visually Impaired Children will provide factual information, advice and support and there's another Yahoo group called the APHAKIC list which stands for Association of Parents Having a Kid in Contacts (a bit contrived, but aphakic means 'without a lens' - they remove the whole lens to remove the cataract)which I keep meaning to join but haven't, so I can't tell you much about them.

[indiemummy]

Wow! You guys are amazing! Crimplene - everything you said made sense (I think), the consultant did mention examinations under General Anaesthetic, and discussed the differences between bilateral and unilateral cataracts. They talked about the implant and the problems & benefits associated with it although I am unclear whether it's something they'd use on Ivy - yet another question to add to the list of things to ask at the next appointment! Yes they would want to operate quite soon. And yes they quoted 25% risk of glaucoma which is very scary. I think despite all this we are going to go ahead with the surgery and all that entails. When is your ds having his operations?

Thanks so much for all the info - that is so useful. I already joined that Aphakic group list thing today on the recommendation of someone on the RNIB Parents' Place Forum. Am on a steep learning curve - one I would rather not be on, but there you go. We have to do what we have to do. It's not quite sunk in yet I think.

Wannabe..., I am cheap and haven't paid up so can't CAT you but thanks - good to hear from someone who's been through something similar and come out the other side!

magso/magsi - thanks for the support! We have to decide pretty quickly. I just want her to have the best vision possible in both eyes. And you're right, babies are adaptable and I am sure we can get the hang of the patching.

Thanks again guys, it's so so nice not to feel alone in all this, I can't thank you enough. I'm feeling a bit all over the place and just needed to hear from some others going through similar things.

Indiemummy xxx

[crimplene]

Hi Indiemummy. I got on with joining the Aphakic list yesterday as well (I think I just didn't think it would come down to surgery for us before) I only remembered about it when I was trying to think of information that might be useful to you and found that thay also have a website which gives a very good overview of the topic. Wannabe: it is very good to hear from people who've come out the far side successfully, all the support groups are, obviously, dominated by people who are having further complications so the prognosis can seem more negative than it really is at times. I read recently that the writer William Styron had bilateral ctaracts removed at birth and went on to live and long, productive (and sighted!) life

There's also an article I found on the PCGFA website that talks about the pros and cons of IOLs in young babies (fraught with complications, although possibly better visual outcomes) which would probably be worth a read if you're thinking about going down that route.

[crimplene]

We're waiting for an appt in about a week's time for DS to be measured up for the ops. We're trying to get a second opinion as to whether we could afford to wait and see a bit longer as the complication rates fall as he gets older, but it's a bit like playing chicken with neurological damage if the cataracts progress. I think it will be within the next couple of months. DP and I agree that if they've stopped growing we'll stick with his slightly duff vision rather than run the risk of glaucoma as we could always choose to have it done later. But I know that the consultant is going to know a lot more about this than we do and she suggests they should come out now.

[bigcar]

Hi indie, i have to second that GOSH is very good. My dd3 11 months has a partial cataract in her left eye, although its not affecting her vision at the moment, hopefully we wont have to consider surgery for a while yet. She also has a squint in both eyes, although much worse in her left eye as this is much weaker. She wears pretty thick glasses as shes also very short sighted and we patch 2 hours a day, shes absolutely fab, she tolerates the patches very well and wants to wear her glasses as it means she can actually see! Plus with the glasses on its harder for her to pull the patch off, she doesnt really know any different at the moment so just takes it all in her stride. We go to the eye unit every 6-8 weeks at the moment and its just become part of our routine, everyone knows us now and is nowhere near as scarey as our first visit.

[indiemummy]

Thanks Bigcar, your dd sounds fab! Well done her (and you), sounds like you're handling it all really well.

Crimplene, good luck at your appointment. The risk of Glaucoma is scary indeed... I've been reading lots about the IOL implant, there is plenty of information out there, I'm slowly getting to learn all the technical terms and ploughing through all the articles. Have now joined the PGCFA group as well, so see you there!
Xx

[stirrupleathers]

Hi there, i have a daughter who is 7 and she was born with bilateral cataracts. There are a few good facebook cataract websites will get the links and post them back on here. hope you two are getting on ok, any questions please ask me...xxx

[stirrupleathers]

Hi everyone there is a good Facebook support group called Congenital Cataracts. Worth joining as there is a lot of very nice people on there! Oh and also Childhood Cataract Network...

[TheNinjaGooseIsOnAMission]

hi stirrup, we also have a vi thread here if you fancy a chat although we may have 'spoken' on the fb group already

[Snowfedup]

Hi I just wanted to say that although its a tough slog and you need to prepare yourself for some hard times getting the patch worn it will be worth it !

Because one eye is ok she will be fine if vision in the other eye isn't great but and it's a big but any useful sight (and some can do v well) will be giving her a chance if god forbid anything should happen to her good eye in the future - a scary number of elderly people are registered blind/partially sighted because of accident / injury or disease in their 1 good eye !

Good luck !

[Fireflyglitter]

Hi, there,
Not really sure if anyone will see this but my ds has been diagnosed with a congenital cataract. He was diagnosed when he was 23 months. He is now 27 months. We go to GOSH. I am looking to make a support group for parents with children in similar situations. I feel we are the forgotten group. Anyone out there??

[stirrupleathers]

Hi I've only just seen this, my daughter was born with cataracts...
Message if you're still here and I will contact you x

[Fireflyglitter]

Hi stirupleathers, thanks for the reply. Yes I'm still here x