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!