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Topic: Congenital glaucoma and pregnancy

Hi



I'm 28 years old, have congenital glaucoma and I'm 10 weeks pregnant with my first child.



I attended Ealing hospital for a routine 6-monthly pressure check coincidently when I had just discovered I was pregnant (about 5 weeks), so I informed the consultant who took me off the eye drops I had been using for the past 10-years - Cosopt twice a day and Lumigan at night in both eye's, with my average normal pressures: 15 in right and 19 in left. The consultant put me on Timolo twice a day and made an appointment to see me 4 weeks later.



I'd been on Timolo myself as an infant so didn't feel this would have any harmful effects on my developing foetus. I used the internet to search possible effects of the Cosopt and Lumigan, discovering that little was known.

Lumigan seemed to be the scariest as studies using animals, mainly rodents, had shown there was a very high risk of miscarriage or birth defects.



I returned to the hospital and discovered my pressures have risen to 23 and 27. Alongside the Timolo I was then put on Pilocarpine 4-times a day and have an appointment to re-attend on 11th Feb.



I really hate being on these drops. They affect my sight so I can't confidently do all the things I would usually do. I have also noticed that in their literature they are not recommended for pregnant women. However, following a conversation with a lady from sight line I have been reassured that they are the lesser of two evils.



HAVE YOU GOT CONGENITAL GLURCOMA AND HAVE HAD OR ARE HAVING A CHILD?



PLEASE IF SO, GET IN TOUCH WITH ME.......



I'd love to hear your stories good and bad. I'm not looking for reassurances: I just want to know the real truth.



OR IF YOU'RE A CONSULTANT / RESEARCHER, PLEASE CONTACT ME....



If you could explain the chemical structures of these eye drops and how they could potentially interact with the developmental process, please let me know.



Is there any research you could recommend I can read?



I'm frustrated there is little information available. Obviously I can understand the ethical and practical problems with this kind of research and so do understand its shortage. That's why I'd even like to hear from anyone who might be interested in documenting my case in order to build some kind of knowledge base, to help others in the future.



Thanks for reading I know. It's a little long winded but I'm very hopeful someone might help me.

Posted : 5 years 7 months ago top

Hi bbubbles.



I wish i could help you with your issues and i really hope everything goes well with your pregnancy. However i am relatively new to congenital glaucoma as i have a son who was born with the condition last feb. We have had a real difficult year. I can only Advise that you see a genetic specialist who focuses on birth defects. If you contact Wendy Sainsbury at the childrens blind society i am sure she will point you in thge right direction.



I really hope all is ok.



nick

Posted : 5 years 7 months ago top

Hi



It was more the side effects of the medication I take to control my glaucoma on my unborn child that I'm concerned about. Also pregnancy normally affects healthy eyes but no one seems to be able to tell me what the possible effects are on eyes effected by glaucoma.



I have 2 glaucoma genes (glaucoma is recessive meaning it requires both parents to be carriers) so only have a glaucoma one to give my child, luckily my baby farther does not carry the gene for glaucoma so our children will simply be carriers and will not have the condition.



I have been for my first ultra sound scan and everything appears to be fine, the new drops are a pain but I'm learning to deal with them. So I'm feeling a lot more positive now.



Please rest assured I'm pretty normal; having congenital Glaucoma hasn't really caused me to many issues until recently. I know that my mom lost a lot of sleep especially when I had to have operations, she had to battle hard with me to put in the eye drops when I was little, none of which I now remember but all of which I'm truly thankful for. As since my glaucoma was discovered at around 8 weeks I have had very little damage to my optic nerves.



You are luckily your little man will not have to carry children so won't grow to experience these problems. Plus things are advancing all the time treatment has really progressed since I had mine and yet I would say that mines been pretty good and very effective.



Thank you so much for your responce, Good luck with everything

xXxB



Posted : 5 years 7 months ago top

My daughter is only 5, so we have not dealt with this. We will though and my well wishes go out to you. It is only for a period of time, soon enough your baby will be in your arms and you will go back to your normal meds....



The only thing I can say is that, although the pressure numbers have risen, if you are not suffering from hardcore symptoms from the glaucoma, it is probably okay. Eye pressures naturally rise during pregnancy as the body in general tends to retain water. Nine months may also seem like a forever amount of time right now, but it's minimal compared to the grand timeline of your life. Visual damage will probably be minimal for that period of time, especially if it is semi controlled.



Posted : 5 years 7 months ago top

Hi there!

My name is Jessica Davis. I am 32 years old. I live in Miilers Tavern, Virginia, USA, and I was born with congential glaucoma. I have been treated at the Virginia Eye Insitute since I was a baby. I am now 14 weeks pregnant. I was so glad to see your post! I have never meet or chatted with someone with glaucoma. There are so few people who have it! The doctor took me off all my drops. The pressure in the right eye is 32. I am scared because I don't want to have surgery again. I have spoken with my Obstitrician who stongly feels that I should go back on my drops. I take a drop of xalatan in the right eye. The left was treated with radical surgery when I was eighteen. I am scared, and I don't know what to do. I am not familiar with the drops you take, but I am going to bring their names to my doctor. The good news is that this is temporary, and of course there is little chance of my baby being born with the disease. The bad news is the damage I do to my eyes by not taking the drops is permanent. Thanks for your post.

-Jessica

Posted : 5 years 7 months ago top

It is nearly impossible to find information about congenital glaucoma/pregnancy and is something I have thought often about. Being recently married and going on thirty years of age having children comes across my mind quite often. In preparing for this, I stopped all treatments because I do not want to take any risks. For me the decision was somewhat easier in that I only have glaucoma in one eye that is already blind. The drops I was taking were doing nothing for me (not lowering the IOP properly) except making me miserable with side effects. So finally with my doctors blessing I stopped treatments and am thinking about possibly getting the eye removed and wearing a prosthetic before deciding to have children. Also, if you want to meet more people with cg you can check out the Congenital Glaucoma Network (http://www.congenitalglaucomanetwork.com). 

Posted : 4 years 6 months ago top

Hi \'congenitalglaucoma\'...I\'ve just stumbled across your post, and was surprised to hear that your condition seems to be very similar to mine - I also have congenital glaucoma in my right eye only, and am blind in it as a result. Mine was discovered when I was 10 years old, by which point the pressure was already 56 and the optic nerve severely and irreparably damaged. I\'d love to hear you story as I\'ve never been able to talk to someone in a similar situation before.

Catherine

Posted : 3 years 5 months ago top

sorry i dont know why but my post above was posted 2x - 

Posted : 2 years 7 months ago top

HI I am 24 years old and have congenital glaucoma in both eyes and i am 22 weeks pregnant with my 2nd child. My left is worse the pressure being as high as 30. My left eye ball is alot larger than my right which is rare. I have only been on drops the last 3 years for the condition.

I am under a consultant who is monitoring me in the maternity ward, they have put me on the safest drops being Betagan perservative free 0.5%. I have to have extra monitoring and growth scans, also they have advised i get a C-Section as giving birth naturally will cause my pressure to rise considerably. I cant afford for my optic nerve to damage further, as my eye consultant is very surprised i still have my sight.

It is pretty scary, but all we can do is relax and listen to the specialists. If yous are concerned I would advise asking for extra monitoring as half of the eye drops on the market are unknown to weather they can harm a fetus or not.

Posted : 2 years 5 months ago top

I would love to get in contact with everyone from this post to see how your pregnancies went and how your children are doing. I would private message you all, but I can't figure out how, as I just joined this site.

I'm currently 26 years old and have had glaucoma since I was a child. My husband and I would like to try for a child later this year, so my eye specialist has pulled me off all of me medications (azopt, alphagan, and betimol) for three weeks to see how my eye responds as he would like me to be off my meds while trying / during the first trimester. My pressure, on meds, runs consistently in the mid-20s. I'm worried I won't be able to make it the three weeks without medications.

Posted : 2 years 2 months ago top

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