Friday, October 15, 2010

scary times

Emm has been cross eyed  since birth, sometimes more, sometimes less. After finally getting a referral for the eye clinic she was diagnosed with a retinal fold on her right eye, which disturbs her central vision.Her left eye was declared perfect and I was consoled with sentences like 'she'll be fine, she has perfect vision in her left eye'. We were advised to patch that eye for two hours a day to make her learn to use the weaker eye, too.

We had another eye appointment for Emm this week, as at the last test she seemed to see less on her 'good eye', probably due to the occlusion therapy, which was stopped. So for this week she got a 'double appointment', meaning she first does the test where she 'reads the charts' (pictures of fish and shoes and houses and so on.), and then goes in to the consultant who has a look at her eyes with lenses and lights. For that they put eye drops in, to dilate her pupils. She seemed to recognise a lot more picture with her 'weak eye', than with her 'good eye' again.

I had thought that maybe Emm had just had an off day where she wasn't as interested in the charts, but after the consultant examined her she said in addition to the fold at the back of her right eye, she was now seeing another one in her left eye! She seemed confused and wondered if she might have missed it the last time. I can't imagine she did as she had a good look at drew each eye fore me in her file, to explain what she had found. It was meant to be a congenital thing, that happened before birth, but finding a second one, now at 23 months, doesn't fit in with this! She wouldn't tell me what she suspects but arranged for a different eye exam, where Emm will be under a general anesthetic, and an MRI brain scan, both to be done within the next two weeks!

Of course i burst out crying but she wouldn't say any more, just that she's sorry about having bad news for me and that she won't be able to say anything until after the tests. Since this I've been crying my eyes out, and fool that I am, googling everything about eyes. The condition that matches the consultant's drawing most, is a persistent fetal vasculature, PFVS, a little stalk that's present while the eye develops, in the womb, and normally disappears before birth, but persists in some cases. The way I understand it's a bit like scar tissue, and over time, as the eye grows, will pull the inner eye out of shape, and distort her vision more and more! It then can also lead to glaucoma, and complete blindness. Or PHPV, a similar condition with clouding of the vitrous... It could also be a kind of vitreo-retinopathy, a degenerative condition that can lead to blindness. I could have coped if this was happening in one of her eyes, but in both! I don't know if this is what she has, but all the other eye conditions in infants and children are even scarier, being linked to genetic syndromes, some in combination with loss of hearing, too!

This is such a terrible time, not knowing, not being told anything, a brain scan for my little baby! I keep sending up little prayers, hoping they'll find it was all a mistake, and crying my eyes out realising that that's very unlikely. I sometimes see Emm looking at small items really close up and i find myself taking them away from her, because it freaks me out so much. She is such a bright smart happy little girl, loving her drawing, and books, knowing her colours and counting to ten and even recognising some letters, it just can't be right that she shouldn't be perfect and healthy! She's always picking flowers and looking at bugs and leaves and asking what everything is...

I've been crying at least every two hours, and I'm starting to worry it's not good for my unborn baby, 26 weeks today. It doesn't help that my cousin and her family are visiting, so when they are in the house  I really have to pull myself together. On the other hand, Emm is having such fun with her cousins, who are 4 and 8, she doesn't notice my state, as she might otherwise. Then I look at them running and dancing around, and admiring each others' drawings, and wonder if she will still be able to do that in 2 years time. Then I have to find an excuse to leave the room and have another cry, and splash a lot of cold water in my face afterwards.
I'm glad I'm on a career break at the moment, I wouldn't be able to function in the office, at all!


  1. I'm sorry you've been left hanging like that. It must be awful for you! I see why they wouldn't voice their suspicions, but that has to be so much to cope with.

    Big hug to you. I hope all works out well.

  2. oh i am so, so sorry. what a terrible situation to be in, i can't even imagine how upset you must be. fingers crossed for the best possible result from the scan. xox

  3. I am so sorry! My kids 'just' have glasses (and patches). From about the same age and I found that quite overwhelming at the time so I can't imagine how scared this must make you...

    Can't help you much (Well if you need info on glasses for todllers you know where to find me!) .

    But know that I am thinking of you...

  4. I'm so sorry to read this, my heart really goes out to you. It can be really awful, the not knowing part and google can actually be a very scary place at these times. I hope it is all ok.

  5. thanks girls, I'm just overwhelmed by how much I can worry about something since I'm a mother! I finally got through to a nice nurse who took the time to pull Emm's file and tell me all about the last appointment, and she assured me that if they were looking for something like a tumour she would already be tested and on her treatment. With grown ups you read about long waiting times for cancer tests and treatments, but apparently for children they move much faster, even with the strained resources. One thing off the long list of worries... Of course we still don't know, but this time next week the tests will be over and hopefully we should have some results and we're hoping it's some non degenerative and treatable condition that we haven't read about yet... it really is an up and down with hoping and despairing...

  6. Oh my goodness, that sounds so stressful. You poor thing. Hopefully everything will be ok. You will be in my thoughts as we have just found out that one of our twins probably needs glasses. She has motor nystagmus (a flicker in her eyes) and loss of vision accompanies this condition. We don't know the extent of it yet, she has tests next week too. It's crazy to imagine our, not yet, 7 month old girl with glasses!
    I'll have my fingers crossed for you and your little girl next week. Best of luck and try to stay positive in the meantime. XXX