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Congenital glaucoma and pregnancy

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

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mlindbergfl
Joined: 01/01/2011
Posts: 1
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.

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Wikstrom32
Joined: 01/01/2011
Posts: 1
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
20 February 2011, 20:10 PM › Go to Reply Form
congenitalglaucoma
Joined: 20/02/2011
Posts: 2
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). 
09 March 2012, 11:27 AM › Go to Reply Form
cbarnes
Joined: 09/03/2012
Posts: 3
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
08 January 2013, 19:44 PM › Go to Reply Form
nycgirl1988
Joined: 08/01/2013
Posts: 2

Dear Bbubbles and Wikstrom32

 

Both of you have been on my mind for a while. I hope everything went ok with the pregnancies and hope your glaucoma is stable. I am reaching out for help and guidance. I am 24 yrs old and have congenital glaucoma. I had 6 surgeries and been on eye drops life long. I found out I was pregnant and am unable to stop stressing about the effects of the eye drops on my fetus. Currently I am 9 weeks. My eye doctor said it is vital for me to remain on my current eye drops: Cosopt, Alphagan, Xalatan, predforte. They are all class c medication- meaning we don’t know the effect of the medication on my unborn child. Alphgan is class B and is considered safe. I went to high risk obstertsians and they told me that bec no testing is done or ever will be done on pregnant women, there is no answer. Bbubbles i want to know if you baby is healthy,bec i know you stayed on some medications. Life with glaucoma is so hard enough. All my childhood I never really understood the worry my mom went through. Her tears while I was in surgery and now my tears for my unborn child. I pray that imp just being a nervous mom to be and that everything will be fine. If anyone can share their experiences with me or any healthcare professionals that can help me with me questions- i greatly appreciate it r help and guidance. I am 24 yrs old and have congenital glaucoma. I had 6 surgeries and been on eye drops life long. I found out I was pregnant and am unable to stop stressing about the effects of the eye drops on my fetus. Currently I am 9 weeks. My eye doctor said it is vital for me to remain on my current eye drops: Cosopt, Alphagan, Xalatan, predforte. They are all class c medication- meaning we don’t know the effect of the medication on my unborn child. Alphgan is class B and is considered safe. I went to high-risk obstetricians and they told me that bec no testing is done or ever will be done on pregnant women, there is no answer. Bbubbles I want to know if you baby is healthy, bec I know you stayed on some medications. Life with glaucoma is so hard enough. All my childhood I never really understood the worry my mom went through. Her tears while I was in surgery and now my tears for my unborn child. I pray that im just being a nervous mom to be and that everything will be fine. If anyone can share their experiences with me or any healthcare professionals that can help me with me questions- i greatly appreciate it 


08 January 2013, 21:08 PM › Go to Reply Form
nycgirl1988
Joined: 08/01/2013
Posts: 2
sorry i dont know why but my post above was posted 2x - 
22 March 2013, 16:26 PM › Go to Reply Form
miasmam11
Joined: 22/03/2013
Posts: 2
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.
21 June 2013, 2:52 AM › Go to Reply Form
withmaps
Joined: 21/06/2013
Posts: 1
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.

23 August 2013, 8:12 AM › Go to Reply Form
09lucylove
Joined: 23/08/2013
Posts: 1
Hi it's amazing to see that I am not thE only women with congenital glaucoma. I am not currently planning on having children but I do want a baby in the future i am not sure how becoming pregnant will affect my congenital glaucoma I would love to here other women's experience who have gone through pregnancy and I also will like to know how that affected your children. It makes me feel better to know that I am not the only person going through this
29 November 2013, 21:50 PM › Go to Reply Form
Pearly
Joined: 29/11/2013
Posts: 1
Wow, I cannot believe I just stumbled on to this group!

I have congenital glaucoma and I am 33 years old.   It was only discovered I had glaucoma shortly after turning 20. I happened to change opticians shortly before leaving for university and they found it in the first 5 minutes of my visit.  The frustrating thing is that I have had to wear glasses for nearsightedness since I was 7 and i was being seen by an opthimologist my entire childhood... he never checked my pressures. I complained of being sensitive to light all the time, always had headaches... suffered from severe migraines always originating behind my right eye. Still my gp and eye doctor didn't seem to think it had anything to do with my eyes.   Fast forward luckily it was not severe, however by the time it was discovered there had already been damage done and despite being put on various types of drops Lumigan now for 10 years the damage is slowly increasing.  I have just moved across the country and was referred to a top glaucoma specialist whom I saw yesterday for the first time.   He looked in my eyes for a total of 30 seconds and explained its definitely congenital and should have been easily caught in my early childhood.   He is now sending me for a battery of tests, one of which takes an entire day where they measure pressure every hour. I am ok with the tests but I am a bit upset that its gradually getting worse and it didn't have to be this way.   I have researched various operation procedures. My dr who has been taking care of me for the past 13 years was pro drops to maintain the 12-15 pressure, I have asked several times about operations to prevent further damage.. but here it seems they'd rather keep you on meds and wait until you are blind before operating. I talked to my optomotrist before moving out this way and he mention that several recent studies are showing surgery early on is a better option and saves sight of patients but also outweighs the risks. 

Being recently married - and being the age that i am hubby and I want to start trying for a baby this time next year.  And I found this thread!!! I have been searching for days for any medical data or professional opinions on CG and pregnancy also looking for information on rates of passing on the disease to my babies .  As far as we know hubby's side does not have glaucoma, and no one in my family has CG either. Were any of you lovely ladies tested genetically for this? Had it crossed your mind?  for those who have had babies how did they care for your CG during pregnancy and were there any affects on the baby?  I am sorry for such personal questions. but to be honest this is the first place I have found that understands how i feel. my family doesn't seem to understand how worrisome it is for me and are quick to offer antidotes of positive thinking.  Which is great, but I am more about facts and understanding - these two things will make me feel more at easy

thank you all for sharing -  reading through the previous posts has really helped me feel so so normal. 


12 December 2013, 23:21 PM › Go to Reply Form
Wenchington83
Joined: 12/12/2013
Posts: 1
Hi All, Wow firstly at 30 years old this is the first time I haven't felt like 'the odd one out'! I too have congenital glaucoma diagnosed at 14 months in both eyes. 29 years on, and countless operations later despite some vision loss I am still currently living a full life style. This year I gave birth to my first child. I was petrified the entire time over the "what if's?" Mostly due to the fact nobody could give me answers as there is so LITTLE documented on it. Whilst my pressures have been stable the last few years from surgery and currently drop free, I know that in a drop of a hat your eyes can stop playing ball and start misbehaving and I just wanted to know was I putting my sight at risk by having a family naturally? And if they did play up was there effective and safe treatment available during pregnancy? Every answer I got was wishy washy, I concluded nobody really knows but what I can share is my own experience. I very luckily had no problems during pregnancy, my pressures remained stable and I went onto have a natural delivery. My baby was referred to a specialist (through much persuasion of mine! Unless you're affected by it or an ophthalmologist, nobody gets the importance!) at 5 weeks old and thankfully despite being a gene carrier, my husband isn't so he is showing all the right signs for healthy eyes and they will continue to monitor him just to be sure until he is about 3. I to have had 2 check ups since and no major changes apart from a little "tired" vision from a few sleepless teething nights :-( The next dilemma will be do I do it again? With no evidence given I kind of feel I'm gambling and I am blessed to have the one. Maybe if there were more groups and support like this it may not remain such a mysterious topic x
04 March 2014, 10:08 AM › Go to Reply Form
Takili
Joined: 04/03/2014
Posts: 1
Hi All, I'm 32 years old and have glaucoma since I was a child. When I was four I've lost sight in my right eye and have poor vision in the right eye.
I stopped using eye drops before the first pregnancy and during breastfeeding (my son is 2 years old) and before the second (now I'm in 26th week).
During both my pregnancies intraocular pressure ranged between 12-18 and everything was more than good. First childbirth was done by caesarean section and now I'm seeking for answer whether it is possible natural childbirth in patients with glaucoma.
I wish you all the best and to stay strong, positive and
enjoy your pregnancy as much as you can. Motherhood is the most beautiful part of life :)

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