Topic: Congenital glaucoma and pregnancy


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.



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


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 8 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.


Posted : 5 years 8 months ago top


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


Posted : 5 years 8 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 8 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.


Posted : 5 years 8 months ago top

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