Monday, 23 March 2015

My Daughter Has Cataracts.....

I often think that my daughter is one in a million, due to her wicked sense of humour and intelligence that surpasses mine by a mile. There is not a day that goes by that I don't feel proud of her in some shape or form. Don't get me wrong, there are times when she pushes my buttons but that's children for you! Every parent hopefully thinks their child is one in a million, but in Iola's particular case, she is 1 in 20'000 as she has Cataracts, well 'Bilateral Familial Congenital Cataracts' to be precise and she has had this since birth.



She has my husband to thank for this as due to a genetic anomaly in my husbands family, many of them are born with Cataracts. My husband was born with it, and 2 of his brothers. His mother was also born with it. When I was blessed with 2 children I always knew that there may be a chance that either or both of them would be born with the condition so flagged it up with the health visitor as soon as my daughter was born. Thanks to this, it was picked up early and she is monitored regularly by the hospital. Bryn has been lucky so far, but our wonderful child minder did mention to me a few weeks ago that he seemed to have trouble seeing things so we will have to watch this space.....

Iola's condition is rare, and so much so that the consultant in our local hospital referred her to a larger hospital in Swansea as they have more experience in dealing with the condition in children. We spent a good few hours there today having lots of tests to see if needs surgery. To be honest, apart from the fact that she wears glasses, I haven't noticed any real signs that she is struggling to see. Her teacher did mention that she seemed to be struggling on occasion to see the board but I wasn't sure if this was Iola excusing the fact that she had got something wrong by saying she couldn't see the board.

During the tests today I was shocked to find out that the Cataracts are so bad in one eye that she can barely see out of it. She has Cataracts in both eyes so it must be affecting her more than I realised. The consultant said that is likely that she will need surgery quite soon as her education will suffer otherwise. I now need to make an appointment to see her teacher to make sure the school are aware of how her condition has deteriorated, and also she needs to have a Special Educational Needs assessment to make sure her needs are catered for.

Although the extent of her Cataracts did come as a shock, it does make me thankful that we have the technology and NHS to fix this genetic abnormality. Years ago, she would have been left to go slowly blind which can be a heartbreaking thing to happen. There will be a risk with the laser surgery and she will need four weeks off school to recover, but eye sight is so precious, it's a small price to pay.

I would love to hear your thoughts if you have ever had any experience of this condition?

16 comments:

  1. No experience of cataracts myself (although both my parents have them in their old age now), but I understand that the surgery is quite sophisticated now and in the future will be the basis (so my optician who works with UHW tells me) for short sight correction because a new lens can simply be dropped in the front of the eye. This surgery is apparently much better than the current method used for short sight correction. I'm sure this is worrying for you but I am certain that the surgery will put things right for Iola - particularly since the surgeon you get is likely to be one of the best in that field. xxx

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    1. Thanks Linda, it is a worry but I'm thankful that she has the option of surgery.

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  2. Poor thing! I can't offer any advice, but hopefully with the wonders of modern medicine she will be able to have an operation to sort it out soon.

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    1. Yes, I know she will be in safe hands. My husband is quite relaxed about it all as he has been through it

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  3. I come from a family of bad eye sight but nothing so bad. I really hope the NHS can help your daughter x

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    1. I know they will sort her out. I'm just shocked that I didn't realise how bad it was

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  4. Bless her, she must have been struggling on, at least now she can hopefully have it all sorted out. We have never suffered from this in our family so can't help you with advise, but fingers tightly crossed for her xx

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  5. Glad they have picked it up when she is so young and they can do something about it. Horrible horrible though, i was so worried when rudi had a blocked tear duct operation and that doesn't compare i know! Keep us updated with how she is doing. xxx

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    1. having kids always generates worry!

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  6. Poor Iola!! hope they sort it out quickly, I'm here if you need anything or are stuck. Give her a big cwtch from us all xxx

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  7. I have no experience myself, but I agree that we must be grateful for the technology we have today and that you were able to start monitoring it at an early stage! I hope you get the best help and guidance you possibly can and wish her all the best! x

    electricSUEDE

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  8. Poor thing, must be awful not to be able to see properly. Hopefully she will get better soon x

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  9. Lovely Iola. I can understand how she doesn't appear to struggle, as it's all she's ever really known, so it'll be really interesting to see how she reacts after surgery when the world is a whole lot more bright and in focus.

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    1. Yes, I hadn't thought of that. Would be really strange for her

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