Topic: I've got Congenital Glaucoma... My story

Hi all

I've been reading through some of these discussions and have seen that those who have babies who have just been diagnosed with Congenital Glaucoma could do with some reassurance, and hopefully my story will give that to you.

Nicbean - I think it was you that mentioned a lady from the blind society telling you about her daughter, that wasn't Wendy Sainsbury by any chance was it? If so I'm her daughter!

So, I'll tell you what I've been told about my early years and where I am now. I was diagnosed with Glaucoma at around 6-8 weeks. I was referred to Moorfields Eye Hospital and my consultant was Mr Rice, like many others. It is him I have to thank for the sight I have now. Mr Rice then retired and Professor Khaw took over. Now I am under the care of Miss Papadopolous.

I underwent various operations, and I'm sorry that I don't know exactly how many, though I'm sure my Mom could tell me! I think I had a trabeculectomy in both eyes and a goneotomy in one eye, among other things! I had numerous anaesthetics to check my pressures. This was all in my first year (I was in hospital for most of this year!) My condition was stable until I was age 10-11 when, at a regular check up at Moorfields, it was found that my pressure was up in my right eye. After a few months of drops not working I had to have another trabeculectomy. I have a lovely scar to show off for that one, but you can't see it unless I pull my eyelid up!! This operation was successful and my condition has been stable ever since.

I'm now 23 and am working as a Family Support Practitioner for social services. I am going to do a Masters in Social Work at UEA (Norwich) in September and will also be working part time for LOOK, a charity supporting families of children with a visual impairment. My vision is good, good enough to drive anyway, just! I am due back for my yearly check up at Moorfields in September.

If anyone has any questions, feel free to ask!


Posted : 6 years 2 months ago top

Hi Ruth. can i just say thanks for taking the time to reply to my post on the site. It is always especially reasurring to hear from someone who has first hand experience.

Yes, it is your mum i have spoken to several times, i was so lucky that she found me. She has told me of your story although not in great detail. I tried to call your mum back last week as she has tried me a couple of times and sadly we missed each others calls.

I would love to know more of your current condition, such as how well you see and any other symptoms you may have as a result of the glaucoma which make your eyes different compared to a non sufferer. I am also intersted to know your exact treatment and pressures during treatment etc. although i could ask your mum if your too busy to reply.

Henry is now 5 months old and has had 5 goniotomies, 2 in right and 3 in left eye. the right eye seems to have responded quite well and hopefully one more goniotomy in his right could be enough. His left eye however will need a trabeculectomy as we went to clinic on tuesday and his pressure had shot up again.

I am so pleased to hear you are ok and have come through the experience obviously so well and that you are putting some effort into easing parents worries such as myself.

I would be glad to put my name down to be involved in any work you do for charity to spread awareness and to help people who suffer from similar conditions.

Once again thanks Ruth, it would be nice to maybe get your e mail, if this is possible i could get it off your mum or i could give mine to your mum to pass on.

Kind regards


Posted : 6 years 2 months ago top


I've just spoken to my Mom who said she'd spoken to you today and given you my e-mail. Feel free to e-mail me anytime!

She also told me that I've actually had four goniotomies! Two in each eye when I was a baby! She said she also thought I'd had a trabeculoctomy. I don't remember any of this though. I'm sorry to hear that Henry will need a trabeculectomy in his left eye, but hopefully that will work. Just remember, no matter how much distress you see Henry in he will never remember it when he is older.

It's quite difficult for me to say how well I see as I have nothing to compare it to, but in optician's speak my vision is 6/36 in my right eye and 6/18 in my left. This is corrected to 6/12 overall with glasses. My Mom has also probably told you that I refused to where my glasses until I was about 12!! Now I wear them all the time and don't quite know how I managed without, but I did, very well in fact. I think children just adjust to these things.

I don't really have any other symptoms with my Glaucoma, apart from maybe a few more infections recently. This just causes a red, irritated, watery eye but as soon as I get some antibiotic drops and lubricant drops it clears up. I've been told that this is due to a dry eye, and that I should use lubricant drops all the time, but I'm a bit naughty with that and keep forgetting, so really I only have myself to blame for recurring infections! The only thing I have to keep an eye on is if my scars start to turn red, though this has not happened yet, touch wood.

Oh, I'm still also a little sensitive to light but nothing at all like when I was a baby (from the stories that I've heard). Though I don't like wearing sunglasses, because I think they look silly! I do wear them when I drive though if it's bright.

My exact treatment I shall have to find out and I'm not even sure that my Mom can remember all of it! Though I will be attending Moorfields in September so may ask for a copy of my notes (I now have two folders of notes as the first one got too full!) I will then be able to tell you exactly what they did to me! At the moment though I just have my yearly pressure check ups and they check my fields every two years. The pressure check, as you are probably aware, consists of having anaesthetic yellow drops put in and they then put this blue thing on your eye briefly. Sorry, that's not a very good description, but it only takes seconds and is not painful in the slightest. Not even uncomfortable really either.

Anyway, definitely e-mail me and I shall tell you anything else you want to know.


Posted : 6 years 2 months ago top

Hi Ruth

As Nic says, thanks so much for telling us your story, it really does help.

I was just wondering if you still need to use any eye drops to keep your eye pressure down?

Hope you enjoy your time studying in Norwich, I come from there originally and really would love to return. It has lots of lovely historical buildings and great shops!

Take care and thanks again,


Posted : 6 years 2 months ago top

Hi Elaine

Sorry, I haven't checked the forums for a while!

No, I'm not on any drops to keep my eye pressure down, which is good!

Norwich is a really lovely city

If you have any more questions please ask.


Posted : 6 years 2 months ago top

1-5 of 15

  1. 1
  2. 2
  3. 3