Proliferative Retinopathy and pregnancy

#1

Hi

Can anyone give me any advice?
I have severe Proliferative Retinopathy in my left eye. I have had 2 retinal detachments, and am know completely blind in my left eye. My right eye has Moderate Retinopathy, but thankfully I can still see. I have done so much laser on my left eye that my eye specialist says he can't find anymore space.
I am only 28 and would really love to have children. But I know that pregnancy can make my right eye get worse? Has anyone gone through this?
Any information or feedback will help please.

Thanks in advance!

#2

Hi VikkiToria,

I also have Retinopathy, in my left eye I'm legally blind currently but have some perifferal vision. Right eye just underwent "an oil change" as I call it, and has made an awesome recovery, I'm 23.
I am also looking to get pregnant but I highly suggest talking to your opt, as they will be able to share their fears or concerns, with your case in particular.
Mine has told me that for the most part, often the retinopathy progresses during pregnancy because of sudden A1c changes. For example I went from 13 to 8 in a few months when I went onto my pump, and that is when I started hemmorraging in the left eye. It obviously put me from moderate to proliferative very quickly. The key is to bring your A1c into a suitable range ar a slow pace so that they vessels in your eyes don't have to deal with the sudden impact or changed pressure and blood flow. If your eyes are used to stew (A1c of 11), they will deffinately not like to go straight to chicken broth (A1c of 7).

If your A1c is already good, it shouldn't be a big problem but i seriously suggest talking with them, having them on your side is a huge asset, especially since you want to prevent a mess not clean one up.

Are you also keen to have children at this time because of a fear of going blind before?

#3

Hi how are you? I had mild proliferative retinopathy in both eyes for 10+ years with no changes. Unfortunately, During my 2nd trimester of pregnancy I developed moderate retinopathy in my left eye. I also had my first experience with laser treatment. It was very scary for me.I also developed pre eclampsia which put me at even more risk of making the retinopathy worse. I was told that sometimes pregnancy related eye issues can go away but i wasnt that lucky.I've always wanted another child but I'm terrified at what could happen with me and my vision during a 2nd pregnancy. I think it would be a good step for you to talk to your eye doctor to discuss the risks and also see a high risk Obgyn for a pre conception visit. Feel free to ask me anything that you'd like to know specifically about my experience. Take care!

#4

Hi Ladybell89.
My A1c has always been pretty good, but I was diagnosed with thyroid cancer in 2010 and had to have radiation. While I was having radiation I had to go off my thyroid medication, which caused my sugars to go out of controll for about 3 months time. This is when I had my first hemorage. A year before all of this my eyes were absolutely perfect! After the first hemorrage, my retina detached. I have had 4 eye operations and countless laser treatments, but the cartlige that built up pulled on my retina again, so it detached for the 2nd time. That is when I had my 4th eye operation. I have no vision left in my left eye, but my right eye is still good. I have probably had over 10 000 laser in my left eye, and maybe about 7000 in my right eye. My A1c has been 6.5 for almost a year now after the radiation.

I have 2 eye specialists, the one says Yes, I can have children (but only after 1 year of my eye being stable), but the other one says No. My diabetes endocronoligist says Yes, because of my good A1c, and my obstetrician says Yes, because all my baby making things look good ;-)

I am still however petrified of going blind in my right eye. So in the end this is a decision I have to make. Me and my husband have been married for almost 3 years, and would love to have children.
But what does it help I have children and go completely blind and cannot take care of them?
I am just trying to get as much information from Type 1 Diabetics who have gone through what I have.
Thank you for your responses!

#5

I had pre eclampsia, too! I'm 5 months pregnant with our second kid (our first is turning one year old this weekend). I had mild retinopathy in my left eye a few years ago, but I stabilized my glucose and the spots/ clouds on my retina went away. I haven't had any issues with the retinopathy returning since giving birth to my daughter last summer- even with the pre eclampsia (thank goodness!). I was checked by my eye doc 3 months after she was born and all is good! Crossing my fingers the pre eclampsia doesn't return this pregnancy and that the retinopathy stays away!

#6

I’ve been type 1 for 21 years, I’m now 26, this past April I gave birth to my first ( and last) baby, anyhow, before the pregnancy, I’ve had no signs of retinopathy, and yes I’ve always had my yearly exams, well after the birth, I noticed black spots in my right eye, dr said I have proliferative retinopathy. Before i got pregnant, my a1c was a 14, in 2 months, i got it down to a 7 so i think that’s why it happened so fast because I’ve heard retinopathy worsens when that happens, no one told me that. That’s just my story, i wish you the best of luck, and if you do get pregnant, make sure your a1c is 7 or less, and have an eye exam every trimester