Type 1 and pregnancy with retinopathy? Good Idea or not?

[Lois1987]

Hi, I have been type 1 for 12 years. Have 5 year old twin boys already. After the children I was diagnosed with retinopathy and to be honest have been devastated ever since I fount out. The thing is, I desperately want to try again for another child but feel the retinopathy will stop me as I have read on various websites that it can make the retinopathy progress much quicker.

I was also diagnosed with graves desiese and this is under control at the moment. I just would like some advice from any mothers with type 1 and retinopathy and there experience with pregnancy.
Thank you

 

[lins100]

I have mild retinopathy in both eyes which has been stable for a number of years. I now have swelling in one of the eyes which I'm hoping goes down. I will not let that stop me try for a child which is not happening just yet but hopefully will one day soon. As long as your being monitored closely by an opthalmologist it should be ok. When pregnant you will be seen each timester by one for any change. They can laser your eye should it get any worse.

 

[weeezer]

Hi, I've been t1 12 years too. Had a trouble free pregnancy 10 years ago and avoided any probs until becoming pregnant with my little girl (now 3). had a few troubles & developed background retinopathy (find it so frustrating because my control during pregnancy was v good). I thought I'd escape any complications because of my tight control yet it still happened. I also experienced far more problematic hypo's (that required help) & she had to come out at 36 wks due to polyhydraminos (sp?) are you on a pump or mdi? Its only during my last couple of years with diabetes I have realised even with (mostly) good control things can start to develop.

I realise I sound quite negative but there is a risk that your retinopathy will worsen, but I'm sure there are plenty of cases where ladies with it have managed a successful pregnancy too. Or that it gets worse but can be treated.

I would love another child but what holds me back is the fear that I could hasten/worsen current complications or that I could risk my health - a risk I have thought about a lot in relation to my two children. (Plus the fact that I'm too old !!)

Good luck with your decision, it's a jolly hard one! X

 

[the_anticarb]

Hi there. I had severe retinopathy after the birth of my first child. I ended up having a bleed about a year later and thought I may lose the eye at one point. I was told not to conceive at this time.

I've now had five laser sessions on my left eye and four on my right,plus a vitrectomy on my left eye. The retinopathy has stabilised and I got the go ahead to conceive and am now 14 weeks pregnant with my second.

Two things I did which were unfortunately quite costly but totally worth it. I paid to see the top consultant in my part of the world to ask his opinion on whether it was safe to conceive again. He said yes, but to have 'top up' laser to protect my eyes. This is laser which is not essential at the time but additional laser to prevent any further problems. You're unlikely to get this on the NHS as they only laser when they have to (although it's worth a try).

Hopefully this is now all keeping me stable - I'm 3 months in and so far no sign of any problems.

I think it depends on how bad your eyes are and how much laser you've already had, but I was pretty bad, my left eye was riddled with really bad retinopathy that would probably have caused a detachment had I not had the operation. My right eye was not as bad but not great either. And I was told it would probably be ok to have a second child.

One word of warning though it can take many months after childbirth for the retinopathy to develop. I had a little bit of laser in one eye towards the end of my pregnancy, about a year later, my other eye caught up and went a bit mental which is why I eventually needed the op.

Good luck

 

[the_anticarb]

Update - I am now 36 weeks pregnant and unfortunately my retinopathy has progressed in my right eye, and I had a bleed the other day.
I realise I'm probably the more serious end of the retinopathy spectrum but it's fair to say I didn't have any proliferative disease, only background retinopathy / pre proliferative before I got pregnant with my first child.
For whatever reason, pregnancy and retinopathy don't really get on when it comes to me!
I had really hoped that with all the laser I'd had, my eyes would come through this pregnancy but seems my retinopathy had other ideas.
It's too early to say how it will pan out, best case scenario once I've delivered the pregnancy triggers will die down and it won't get any worse but who knows. I'm going to have a vitrectomy on my right eye if it does not settle though as that does seem to have stabilised things in my left eye.
Despite feeling deeply disappointed at the retinopathy coming back, it's still all worth it to have another child.