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I've got Congenital Glaucoma... My story

01 January 1970, 1:00 AM › Go to Reply Form
starbizarre
Joined: 01/01/2011
Posts: 1
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
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Nicbean
Joined: 01/01/2011
Posts: 4
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
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starbizarre
Joined: 01/01/2011
Posts: 1
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




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Elaine
Joined: 01/01/2011
Posts: 1
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
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starbizarre
Joined: 01/01/2011
Posts: 1
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
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lhxewl
Joined: 01/01/2011
Posts: 1
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.


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Nicbean
Joined: 01/01/2011
Posts: 4
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
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mlindbergfl
Joined: 01/01/2011
Posts: 1
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.
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Wikstrom32
Joined: 01/01/2011
Posts: 1
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
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krisaustralia
Joined: 01/01/2011
Posts: 15
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
20 February 2011, 19:58 PM › Go to Reply Form
congenitalglaucoma
Joined: 20/02/2011
Posts: 2
It is really inspiring to hear so many stories of people living well with congenital glaucoma! I also have congenital glaucoma and lost vision in my left eye but have not let it slow me down one bit. I invite you all to become part of a new website that I have created called the Congenital Glaucoma Network. (http://www.congenitalglaucomanetwork.com). This network was founded as a place to facilitate discussion, provide support, and promote awareness of congenital glaucoma. Your stories and words of wisdom are invaluable to other dealing with this disease. 
30 March 2011, 22:53 PM › Go to Reply Form
LittleB
Joined: 30/03/2011
Posts: 1
Hi All, it is so reassuring to know that you're not alone going through this. I have a beautiful baby girl called Phoebe who is now seven months old. As soon as the midwife handed Phoebe to me when she was born I knew something was wrong with her eyes, as I could not see her pupils in either eyes and thought she was blind. none of the doctors could confirm what was wrong with Phoebe and referred us to the Royal Eye Hospital in Manchester. We had no idea what was in store for us. As soon as we saw our consultant he informed us that it was congenital glaucoma and that they needed to operate straight away. He wasn't too hopeful about Phoebes left eye but more optimistic about her right (strange how it seems to be the left eye that is worse for you all too?). Phoebe has had 2 trabeculectomies and needed anti scarring injections - to date she has had five operations. For the first three months she was on hourly eye drops and had to wear little eye shields. We are fortunate that Feebs eye pressures at the moment are stable and are going for check ups every four weeks. considering how severe the glaucoma was, it is amazing Feebs has sight in both eyes. The thing that I find hard at the moment is patching. Because of the significant difference in both eyes, we have to patch the right to maintain the sight in the left. We are currently doing four hours a day. Me and my husband thought, foolishly, that patching would only be for a short time, but will be required to the age of eight! Phoebe hated this at first and was very scared, as she is extremely short sighted in her left eye, but as time goes on, she is much more use to it and it is encouraging to see that it seems to be paying off, as she is focusing better with that eye. As a mum I naturally worry and really found it hard to get my head around, and still think that maybe when I wake up tomorrow all will be well, but I think as things have settled down I have had time to think about things. Phoebe is the happiest baby I know and always smiles, she is a true joy and I am so proud of her, I am also grateful that, touch wood, there seems to be nothing else wrong. I have really found comfort in reading all your posts as I have felt there is no one else I can talk to who can relate to what we are going through, there seems to be no local support groups. I am also reassured to read posts from adults who are living with this condition and feel more positive about the future for Phoebe. I wish you all well and thanks for your posts xxx
31 March 2011, 20:52 PM › Go to Reply Form
optimist
Joined: 01/01/2011
Posts: 54
Thank you for sharing your story. You have all gone through so much in such a short time and it is inspiring to feel how positive you are. I hope Phoebe's pressures continue to remain stable and she remains a happy baby. Best wishes and good luck for the future.
09 March 2012, 11:20 AM › Go to Reply Form
cbarnes
Joined: 09/03/2012
Posts: 3
Hey everyone,

I\'ve been reading through this forum for ages, and I\'m astounded by the number of children out there who, like myself, have been diagnosed with congenital glaucoma. Like Ruth, I\'m now in my early 20s, and at the other end of a childhood with glaucoma, so thought I\'d share a brief version of my experiences with you.

Firstly, I\'ll start by saying my case was quite unusual in a number of ways - I only have glaucoma in my right eye (most of the above seem to be lefties!), and as a side effect of another condition - I have an Ectopic Uvea, which means that the pigmented layer of my eye has spilled over onto the blue of the iris. You can actually see a picture of my eye here http://www.flickr.com/photos/andreasfina/4922681369/ (my partner thought it would make an interesting photograph). So as a result of this abnormal eye development, the pressure in my eye slowly but surely crept up through my childhood. Although I was regularly visiting an optician, for I always had weaker vision in this eye, this went undetected, and it was only when a maternity leave cover optician stepped in that he spotted that something was up. It is for this reason that I believe children should also have routine pressure checks.

As I\'m sure you know, the average pressure range in a healthy eye is between 12 and 21, but when this man pressure checked my bad eye, the pressure was 56. At the age of 10 I was immediately referred to the hospital, and went through an operation (I\'m afraid I cannot tell you the exact name of the procedure, but it involved making a small incision to help the eye drain). The pressure was measured immediately after the op at 6, which was a rather dramatic drop, but soon after, with the help of a range of about 4 eyedrops taken throughout the day, it stabilised at the low end of the normal range for a while. It was sadly too late by that point to save my vision, and I am now almost entirely blind in my right eye.

However, it soon became apparent that the pressure was rising again, up from the 20s to the 30s, and the specialist at the hospital told me that the drainage channel had healed - because I was so young. This process was repeated twice more - operation, pressure increase, operation. I know the last one was a different one, possibly a trabeculectomy. I also had an anti-healing injection in my eye afterwards. Since that last op, my pressure has stabilised in the high 20s. Although this is not ideal, it can be maintained with one Travatan drop every evening, and as the vision is already gone and I experience no discomfort, it made no sense to undergo another operation.

As a result of this, I developed a squint in this eye, and it tended to wander to the outside, particularly when I was tired or working long distance. A couple of years ago I had my fourth and final eye op to correct this, and now I finally feel like things are under control. Internally and externally my eye is ten times better, and has worked wonders for my confidence.

I graduated last summer with a first class degree in fine art, and have since set up my own photography business, so my vision is everything to me! Fortunately the vision in my left eye is better than average, so does a good job of compensating. I am therefore able to drive and lead an almost entirely normal life. The only thing I struggle with is depth perception, so I\'m not a great catch!

Sometimes I look back and start to feel angry that I was let down by a number of professionals....the doctor from the hospital that told my Mum when I was a baby that, although my pupil was irregularly shaped it would cause me no problems, and was nothing to worry about. I have since been told that Glaucoma can often develop as a secondary disease after having an ecoptic uvea. I am also disappointed that the optician did not spot anything abnormal sooner - if it had been identified before the optic nerve was so badly damaged, then I would still have sight in my right eye.

However, the last thing I want to do is leave this on a negative note - although I am sure that having a baby or young child with glaucoma must be extremely difficult, at least it has been identified in time. I have no doubt in my mind that all of your children receiving treatment are in great hands and will have a very positive future.
12 March 2012, 8:21 AM › Go to Reply Form
cbarnes
Joined: 09/03/2012
Posts: 3
Hey everyone,

I\'ve been reading through this forum for ages, and I\'m astounded by the number of children out there who, like myself, have been diagnosed with congenital glaucoma. Like Ruth, I\'m now in my early 20s, and at the other end of a childhood with glaucoma, so thought I\'d share a brief version of my experiences with you.

Firstly, I\'ll start by saying my case was quite unusual in a number of ways - I only have glaucoma in my right eye (most of the above seem to be lefties!), and as a side effect of another condition - I have an Ectopic Uvea, which means that the pigmented layer of my eye has spilled over onto the blue of the iris. You can actually see a picture of my eye here http://www.flickr.com/photos/andreasfina/4922681369/ (my partner thought it would make an interesting photograph). So as a result of this abnormal eye development, the pressure in my eye slowly but surely crept up through my childhood. Although I was regularly visiting an optician, for I always had weaker vision in this eye, this went undetected, and it was only when a maternity leave cover optician stepped in that he spotted that something was up. It is for this reason that I believe children should also have routine pressure checks.

As I\'m sure you know, the average pressure range in a healthy eye is between 12 and 21, but when this man pressure checked my bad eye, the pressure was 56. At the age of 10 I was immediately referred to the hospital, and went through an operation (I\'m afraid I cannot tell you the exact name of the procedure, but it involved making a small incision to help the eye drain). The pressure was measured immediately after the op at 6, which was a rather dramatic drop, but soon after, with the help of a range of about 4 eyedrops taken throughout the day, it stabilised at the low end of the normal range for a while. It was sadly too late by that point to save my vision, and I am now almost entirely blind in my right eye.

However, it soon became apparent that the pressure was rising again, up from the 20s to the 30s, and the specialist at the hospital told me that the drainage channel had healed - because I was so young. This process was repeated twice more - operation, pressure increase, operation. I know the last one was a different one, possibly a trabeculectomy. I also had an anti-healing injection in my eye afterwards. Since that last op, my pressure has stabilised in the high 20s. Although this is not ideal, it can be maintained with one Travatan drop every evening, and as the vision is already gone and I experience no discomfort, it made no sense to undergo another operation.

As a result of this, I developed a squint in this eye, and it tended to wander to the outside, particularly when I was tired or working long distance. A couple of years ago I had my fourth and final eye op to correct this, and now I finally feel like things are under control. Internally and externally my eye is ten times better, and has worked wonders for my confidence.

I graduated last summer with a first class degree in fine art, and have since set up my own photography business, so my vision is everything to me! Fortunately the vision in my left eye is better than average, so does a good job of compensating. I am therefore able to drive and lead an almost entirely normal life. The only thing I struggle with is depth perception, so I\'m not a great catch!

Sometimes I look back and start to feel angry that I was let down by a number of professionals....the doctor from the hospital that told my Mum when I was a baby that, although my pupil was irregularly shaped it would cause me no problems, and was nothing to worry about. I have since been told that Glaucoma can often develop as a secondary disease after having an ecoptic uvea. I am also disappointed that the optician did not spot anything abnormal sooner - if it had been identified before the optic nerve was so badly damaged, then I would still have sight in my right eye.

However, the last thing I want to do is leave this on a negative note - although I am sure that having a baby or young child with glaucoma must be extremely difficult, at least it has been identified in time. I have no doubt in my mind that all of your children receiving treatment are in great hands and will have a very positive future.

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