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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!



Ruth

Posted : 6 years 1 month 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



nicholas

Posted : 6 years 1 month ago top

Hello!



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.





Ruth









Posted : 6 years 1 month 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,



Elaine

Posted : 6 years 1 month 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.



Ruth

Posted : 6 years 1 month ago top

Originally posted by: starbizarre



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.







Ruth




hi ruth / nicbean,



just found these webstie and forum my baby gal was diagnosie with glaucoma when she was 1 day old...as her right eye conear was very cloudy.



and this is our 1st baby cant really think of future.... BUT i always remind myself to stay postivie and have faith.



im now living in singapore. lets keep in close touch.





Posted : 6 years 1 month ago top

Hi Ihxewl.



Well what can i say, it seems like two minutes ago since we was in exactly the same position as you. We did not know what to do. I thought my babies chance of a normal life was over and that he would be blind and unable to do normal activities.

I can rememeber looking everywhere for advice and still not believing that it would be ok even after people assured me it would.



When I was lucky enough to meet Ruth and her mum I realised that all the reassurances were true. They told me from experience - that once the pressure is under control life would return to normality. Ruths mum told me that i was in for an enduring time of hospital visits etc during the first year and she was right. My son had 5 goniotomies and 2 trabeculectomies along with several check up aneasthetics.



I can now say from my own experience that it will be a tough first year but that it will be worth it. One way or another the doctors will get the pressures under control and once they do your life will slowly be returning to normal. Your baby will lead a normal life and so will you. the only way people will know about the glaucoma is when you tell them. Sure its more demanding than a baby without glaucoma but glaucoma babies are special and so rewarding.



I know its difficult to just believe people when they say it will be ok but as long as you turn up at hospital when asked and follow all the instructions set regarding drops etc you have done all you can.



Please if there is any questions i am glad to offer my limited experience for answers



Best wishes



Nick

Posted : 6 years 1 month ago top

I can't say that I have glaucoma, but my daughter was diagnosed with it at about 18 months of age. She is now almost 5.



I have to say that you are lucky that the glaucoma was caught early, and the fact that it was, your overall outcome will be much better....



A lot of questions I get from parents (of glaucoma kids and general population) is will she ever live a normal life. I can't answer what the future will bring, but I can say that with all the issues she has visually, unless I mention it, or the individual is close enough to the family to know her background, most people don't notice an issue at all, and that is with the left side vision completely gone. Most people do tell me she beats to the rhythm of her own drum, but otherwise a normal healthy kid.



Will she ever do the same things other kids do? I don't know. But in the end she is still her- her personality, her love of life, her overcoming spirit- she is still my daughter and we will cross those bridges when we get there. In the meantime we focus on it not being a hinderance, we focus on all the positives and we stay as full of life and energy as we can.



As a parent I struggled for a LONG time with why. Why did it have to be this way. Why did I have a kid with Glaucoma when all the other kids around me were normal, or at least normal enough not to have learning issues.... but it comes down to this..... There is a plan and a purpose for my daughters life just the way she is.



So as a parent, take a deep breath, know that it will NOT take over your entire life forever, and that kids are kids and they WILL OVERCOME. Lastly, give thanks that it is just glaucoma.... it really could be worse.

Posted : 6 years 1 month ago top

Hi! My name is Jessica Davis. I am thirty-two years old, and I was born with congential glaucoma. At three months my mom noticed me squinting outside and trying to cover my eyes. I remember harsh light felt almost painful to my eyes. I was taken to several doctors. A nuerological disorder was ruled out. Finally, I was diagnosed with glaucoma. The doctors immediately performed surgery on the left eye. Two years later at age three I had surgery on the right eye. I was put on betagan in fourth grade. My eye pressures have always been high. Sometimes in the early twenties or late teens. The pressure in the left eye became extremely high at age eighteen, so I had surgery for the third time. It was a trabeculectomy. Recently the doctors put me on xalatan, which worked well. I am currently not taking any medication because I am fourteen weeks pregnant. My eye pressure is way too high in the right eye. I am open to advice. I certainly don't want to do anything that would hurt the baby. I have led a relatively normal life. I graduated from college, and taught English for three years. I am currently earning my masters degree. I aspire to be a reading specialist, and I won't be able to do this without my sight. Thanks for listenting.

-Jessica

Posted : 6 years 1 month ago top

I hope things are working out for you Ruth and all...

Jessica - yr story sounds familiar to mine (age/career etc etc) except the cataracts/glaucoma/retina problems put an end to my English teaching career before it began. You'll be in a unique position to appreciate the written word so I wish you all the best in becoming a reading specialist - I used to love reading books so I hope all those on this forum who can still read a book or who can/has ever driven a car etc appreciates and makes the most of it while they can!



Kris

Posted : 6 years 1 month ago top

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