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What would you do? (long post sorry!)

1 reply

sarahsausage · 01/07/2010 11:26

Before I start I would like to say I have made no decision on what to do and that I struggle to speak with my family about this as I get upset talking about it.

I had my dd when I was 18 and had never really been around babies. When she was 9 months old we went to the doctors for the normal 9 month check. They asked about her eyes, and I told them about a slight squint. Her eyes were examined and we were referred to the hospital to see an eye specialist.

He was worried by what he saw, and my dd ended up having an MRI scan under GA (very traumatic experience, for me, my dd was not phased at all!!) After the MRI we were told that my dd did not have a tumour but there was damage to her eye, scarring at the back of it. They told me she had no vision and that it happened during my pregnancy but they weren't sure just what happened but that they would monitor it to make sure there was no change. We then had 6 monthly appointments with both an eye specialist and a pediatrician. They would check her sight and head circumference, height weight etc. Eventually she was discharged from the pediatrician and was told she was developing normally.

One day I woke up and noticed that my dd's pupil was at the top of her eye. I took her to the A & E and was taken straight through to her specialist where I was told her retina had detached.

Since then, have had no problems with her eye, though it does sometimes get red and looks painful but my dd (who is now nearly 7) says it does not hurt. However, as she is getting older, her "poorly" eye is not growing and there is now an obvious difference in size. The last time I went to the specialist I was told (again) that there is nothing they can do and that she will never have sight in that eye. Her other eye is perfectly normal. I was told that she could have corrective surgery to stop the eye from wandering or a contact lens in her poorly eye to make the eye appear bigger but that the socket is not going to grow. The doctor told me that my dd could have a prosthetic eye fitted which would encourage her socket to grow and that she would have to keep going back to have a slightly larger one fitted each time to promote the growth.

I'm torn whether to put her through the ordeal of having a prosthetic eye fitted so that she won't look "different". People are starting to ask what's wrong with her eye and I really don't want her to be bullied at school. I want her to be happy with her appearance and not to be mad at me when she's older for not doing this nowbut she overheard me speaking to my mum about the prosthetic eye and said she didn't want to have it done. I know she's only 6 and doesn't really understand but I really don't know what to do.

I haven't really discussed this with the doctor as her last appointment was nearly 12 months ago and when they told me about the prosthetic eye idea I said I wouldn't want to do it. But having thought about what it would do for my dd I'm now considering it.

I have an appointment with the specialist next week and am going to ask about the procedure and get more information on what it involves.

What would you do?

Thanks for getting this far, sorry about the length!

OP posts:
SparkleRainbow · 01/07/2010 12:28

Do you have a good gp with whom you could discuss it all before you go to the consultant? It might help to sort out what questions you have before you get there. I would do that, making an appointment in your dd's name, but not take her so you can talk about all the options without worrying about her reaction. Also have you got a friend who can go with you, and will be supportive of you, even if you get upset, and also who can help to remember what has been said?

If she has no vision in that eye at all I would be tempted to find out about the prosthetic eye, the initial procedure, and how invasive subsequent procedures are to replace it with a larger one. I guess if it is really noticable now and she is only 6 it is going to become more noticeable, and she may be grateful in the long run if you take a more aggressive course to "normalise" the look of her eyes. But I also feel that you should be comfortable enough to say no if you feel the risks of such a procedure do not make it worth it.

I am so sorry that you are having to deal with this. Big hugs

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