Should I have another baby? (retinopathy)

[phoenix]

If you do decide to go ahead, have you thought about a pump. I notice on another UK forum that there are a group of mums to be all on pumps.
The guidelines say

During pregnancy, women with insulin-treated diabetes should
be offered continuous subcutaneous insulin infusion (CSII or
insulin pump therapy) if adequate glycaemic control is not
obtained by multiple daily injections of insulin without significant
disabling hypoglycaemia

http://www.nice.org.uk/nicemedia/live/1 ... /41342.pdf
You said that you had frequent hypos in the last pregnancy... being able to finely adjust your doses and especially your basal could be very useful.

 

[Unbeliever]

Re the consulant anti-carb , I have to agree with catherine cherub. All of the eye consultants in my hospital also work in more than one private practice. Often after a full dy in the NHS hospital!

One or two who used to work in the NHS have now semi-retired and just work in the private practices . Definitely check the profile. You may be paying unnecessarily and getting a tired or RE_tired consultant.

As most treatments for retinopathy are available on the NHS {or proven alternatives are} I would certainly think carefully about it.

I would only consider paying privately if I was unable to see my usual consultant as I have great faith in him.

A few weeks ago there was a young lady with an insulin pump at my clinic. She was made a priority with all the consultants holding an impromptu conference. Nothing wrong - she just wanted advice because she was pregnant and had had some problems in the past. You would have been impressed by the attention she received I am sure.

 

[Tracey167]

Hi

I think you will have to get as much advise from doctors, nurses, consultants as you can. It must be really hard for you trying to make a descision like that, if i find any info for you i will let you know, i would say take your gut feeling but if that was me i think it would be the baby but on the other hand if that could lead to losing your sight like you said your caught between the devil and the deep blue sea. So exhaust every avenue and ask every medical professional that you can.

Good Luck

Tracey167

 

[wiflib]

I'm a Midwife and I most certainly wouldn't be telling you if it's safe to have another baby or not.

What your HCPs should be doing is offering as much information as they can, based on current up-to-date research and your particualer medical history. They should discuss the pros and cons of any treatment or expectant management and support you in your decision about your health and this holds true for everybody, where ever they are, what ever they suffer from.

wiflib

 

[the_anticarb]

Update - I saw the private consultant today and it's kinda good news kinda bad news. Basically my left eye seems to have caught up with my right eye and got proliferative retinopathy. But he said he was confident this could be treated and stabilised with laser. So he said not to get pregnant until it is sorted.

I guess I should feel relieved because that means we can have another baby - but i also feel very low because my retinopathy has got worse. TBH I think this was probably on the cards anyway, as they were going to laser my left eye last year after my pregnancy but because I was on the borderline between needing treatment and not, they didn't. But I think now a year later my left eye has caught up.

The good news is the consultant said it is controllable and in his view I should be able to have the laser, wait a few months to check it has stabilised and then get the all clear. He said if i get pregnant during this time it would not be good as it can affect how well the eye responds to the laser.

This has been a big wake up call for me that i can NEVER neglect my health again in my life, although last year i have been generally ok barr a couple of lapses, I think I've had it with carbs now as its just too hard to get the good, fine control on a high carb diet without getting the hypos. I also need to watch my blood pressure and cholesterol big time too. Basically, i've used up all my chances.

I know i'm fortunate that he's said the laser should stabilise my condition enough to get pregnant. It's bad timing to a certain extent, needing the laser at the same time as i want to get pregnant, if they'd done it last year then I'd probably be able to get on with things. As it is, a few months wait (he said 3-6) will not matter too much in the grand scheme of things, so long as the retinopathy DOES stabilise.

In any event, it was well worth going private, particularly as I could have conceived before my next NHS appointment. I felt i could take all the time I wanted to discuss my problem with the consultant and ask lots of questions. Even though the news was not as good as i hoped in some respects, we can still try for a baby later in the year, and it will all be worth it when that happens.

 

[sugar2]

HI AC,
I am a bit late to this. I had laser for retinopathy back in 1995, and went on to have 2 babies. I was 33 and 35 when I had them. No negative effect on my eyes.

I am kind of pleased that I am writing this after you saw the consultant, as basically, my opinion, kind of agrees with them! Back in 1995, I had so much laser, they could not give me any more..nothing left to laser! Since then my BG has been good, as that really was my wake up call. So, for me, I think it was because I knew that they had done such a thorough job on my eyes, together with my good control, that gave me the confidence to become a Mum.

I did have a similar dilema though..but it was kidneys, rather than eyes for me. During pregnancy one, I had to be induced early because my kidneys were leaking protein so much and my bp was through the roof. At my post birth 6 weeks check up, the consultant advised it might be a good idea if "we didn't meet again"..ie, don't have more children. However, I actually now believe that I had pre eclamsia, rather than a diabetes related kidney issue, as a year later, they were back to normal. So like yourself, it was a mater of playing it by ear, making sure that I was in teh best condition I could be, and had taken all teh necessary steps (like more laser?) before going ahead and trying for number 2.

Hopefully you now have a plan..and know where you are. For me, my second baby..now 3 yo, was born, absolutely perfect, and I had been lucky enough to have a dream pregnancy with him...and after the nightmare of the fisrt time round ths swas great. The study Pheonic found was interesting, and backs up my experience. Fisrt time round, my body was stretching and changing and basically fighting back against the extra work pregnancy demands...2nd time around, it kind of gave in and went with the flow..my BP hardly rose at all..maybe, like my stomach, my blood system was stretched before so it could take the strain?!
On a practical , nothing much to do with diabetes note...having 2 children under 2 is hard work. You can breast feed a newborn, whilst cuddling a 20 month old and test your blood at the same time...but I wouldn't recommend it! Having a little bit large gap, could be a blessing.

35 is relatively young too!

 

[weeezer]

well although i'm not glad your eyes were worse than you'd thought, i'm glad you had a realistic & informative consultant who has told you how things are. thank goodness you saw him early on rather than waiting and maybe falling pg in the meantime. how old is your little one now? completely agree with sugar, imagine 2 under 2!!!!! and coping with the high demands that pregnancy brings from day 1...fluctuating levels, increasing insulin requirements etc. it's a blessing in disguise...time enough to get your laser sorted, stabilise, then go for it!

i don't blame you for wanting to reduce carbs...now you've got the time to find a good balance & what works for you before pregnancy. i was really intrigued by the idea of lowering carbs and was just starting to look into how to go about it...then bang! pregnant, so i don't want to go messing around with it now, although i'm right at the start and it's real early days, my insulin requirement has gone up about 35%, ridiculous but true. def not eating any more, if anything eating less! having 1 slice of burgen bread for toast & seeing what happens, if slightly low an hour later having an apple or banana.

anyway, with your vigilance, you can do it all...and i know damage has occurred, but you are the captain of your ship & you can really reduce the risk of any future damage - as i have only just come to realise. and you can work on that A1c & get it in the 5s before conceiving! wishing you luck & strength for next few months xxx

 

[the_anticarb]

Thanks Weezer, I'm calling this my retinopiphany, I have had diabetes 20 years now, and never really truly accepted it until very recently, although the last three years my control has not been too bad the 17 years before that it was non existant.

In a strange way I'm wanting them to get on and laser my left eye now, so that I can think right that's it both eyes have been done and its time for me to have a fresh start and really look after myself from this point on. Last year I was petrified of them lasering it, as they were going to do so after i'd had my baby but then thought better of it, but now I can see its the right thing to do. I'll feel a lot better getting pregnant if it's just been treated, too.

I'm lucky my kidneys are ok and my feet are ok so no other damage I am aware of. I think the stakes have changed for me now, I know for the rest of my life I need to be very vigilant and keep my hba1cs under 6.5 if pos, 7 tops and also monitor my blood pressure and cholesterol. I will have stricter goals than most diabetics, who don't have complications.

But I am ready. I'm ready to accept that my diabetes comes first in my life and needs to be respected. I'm really hopeful that I won't need laser more than once if my control stays good, i'd hate to spend the rest of my life paying the price for the out of control years, and whilst I know there are no definites, I'm confident this will be a real fresh start for me and i won't need any more treatment in future.

This really has been a horrible time for me worrying about going blind/having another baby and I don't want to ever feel like this again.

 

[mirabba]

I am the Mum of Rebecca- who has diabetes- dianosed as type 2 -6 years ago, she has been on insulin since July 2011 and seemed to be making good progress- except that everytime we put the units up, to try and reduce bs, they went up after a couple of days. We went on like this for 6 months until we reached 34 units, which was when she had her first hypo- not clever at night ! we all went into panic mode- she had several near hypo's after, but were averted with lucozade and a biscuit or toast, but made her bs high again in the morning. That was then- I reduced her insulin drastically and for the last three months we have been trying to get her bs down to whatever folk call normal as they have been running too high. She deals with the insulin quite well, after nearly choking on the tablets several times because of the size, eventually would't or couldn't take them, which is when she went onto insulin ( 2Xdaily,dual action, Immediate and slow release ) but does not like the Stabber-as she calls it. Rebecca is 34, is Hyperthyroid and has Down's Syndrome. She had open heart surgery at 10 months for a large hole in the heart.
There are so many possibilities and no exact science to getting it right, especially with the twice a day regime she is on, so far from being confident about this all, I am left feeling inadequate. It sounds as though someone has discovered that her eyes should be fine- but what about all the other things that can go wrong????? I begin to despair.

 

[michellehayward]

hi, i have had 3 babies all with slightly trickier pregnancies than the one before. all were unplanned but all worth it. my bg's were not good before but did improve slightly during pregnancy. my area of problem was kidneys, once i delivered things settled down. i think you just have to follow your heart and do whats best for you and your family, if you want another baby have one.

 

[the_anticarb]

I will michelle, i will...it's just a question of when now. i've been told not to get pregnant until my retinopathy is treated and then stabilised. This will take 3-6 months. it's not a huge stretch of time in the grand scheme of things, i'm upset that my diabetes is controlling what i want to do, but i'm sensible enough to know not to risk it at the moment. it kind of feels like this is my punishment for being uncontrolled when I was younger, but as far as punishments go it is only temporary so I think i can live with that.
i just want to get it all sorted now, then be super healthy the next six months and hopefully get going again with TTC after that.

What was the problem with your kidneys, was this only a problem in pregnancy?

 

[tasha]

I haven't posted on this forum for a couple of years, but wanted to let you know I'm going through exactly the same thing now.
My daughter is 2. I had hba1cs in the 6s during and before my pregnancy. Retinopathy developed almost instantly. I didn't need laser until after. But I developed macular odema and it affected my sight in the last trimester. Scared the hell out of me.
About 2 years a go (daughter was about 6mnths) I asked my opthamologist (I am very lucky as I have 2 professors!) if I could have more children. He told me he'd rather I didn't! And that if I was his daughter he would tell me not too. I went into a deep depression about it. But the whole time I was determine that I couldn't give up. I've read loads of research papers on it. And I bring it up every appt. The oedema had improved to the point it had pretty much gone 18 months post partem. Unfortunately, a virus over the new year meant horrible control for a month and it has caused a slight increase in fluid again.
They know I've made my mind up. They know it will return. They also know that I have pretty good control. I'm on a pump and my hbA1cs have been below 7 for years. I was told it's just bad luck and bad genes :-(
I asked the question outright if I'd go blind. I was told no. The worst would be that I would only be able to see shapes in black and white (remember if have it in the macula), but he said that wasn't going to happen in my case. He just wanted me to know that this time the problem might not reverse.
Luckily, during the whole nightmare, my retinopathy as such didn't get any worse! Yes, there must have been leaking. But they said that if it hadn't have been for the OCT (scans) they wouldn't have even been able to pick it up!
So, slightly different story to you, same dilema. But the difference is, if I don't go ahead I'll always regret it. If I do go ahead and things get scary again, I'll be prepared this time. And the chances are that there will be a happy story.

Just wanted to add. That all the papers I have read and the many women I have spoken to around the world who have gone through this have said that their second pregnancy didn't mean a return of the retinopathy. Unless you were unlucky enough to have my complication with the oedema, retinopathy normally burns itself out and doesn't necessarily mean it will return.

Good luck with your decision x

 

[the_anticarb]

I haven't posted on this forum for a couple of years, but wanted to let you know I'm going through exactly the same thing now.
My daughter is 2. I had hba1cs in the 6s during and before my pregnancy. Retinopathy developed almost instantly. I didn't need laser until after. But I developed macular odema and it affected my sight in the last trimester. Scared the hell out of me.
About 2 years a go (daughter was about 6mnths) I asked my opthamologist (I am very lucky as I have 2 professors!) if I could have more children. He told me he'd rather I didn't! And that if I was his daughter he would tell me not too. I went into a deep depression about it. But the whole time I was determine that I couldn't give up. I've read loads of research papers on it. And I bring it up every appt. The oedema had improved to the point it had pretty much gone 18 months post partem. Unfortunately, a virus over the new year meant horrible control for a month and it has caused a slight increase in fluid again.
They know I've made my mind up. They know it will return. They also know that I have pretty good control. I'm on a pump and my hbA1cs have been below 7 for years. I was told it's just bad luck and bad genes :-(
I asked the question outright if I'd go blind. I was told no. The worst would be that I would only be able to see shapes in black and white (remember if have it in the macula), but he said that wasn't going to happen in my case. He just wanted me to know that this time the problem might not reverse.
Luckily, during the whole nightmare, my retinopathy as such didn't get any worse! Yes, there must have been leaking. But they said that if it hadn't have been for the OCT (scans) they wouldn't have even been able to pick it up!
So, slightly different story to you, same dilema. But the difference is, if I don't go ahead I'll always regret it. If I do go ahead and things get scary again, I'll be prepared this time. And the chances are that there will be a happy story.

Just wanted to add. That all the papers I have read and the many women I have spoken to around the world who have gone through this have said that their second pregnancy didn't mean a return of the retinopathy. Unless you were unlucky enough to have my complication with the oedema, retinopathy normally burns itself out and doesn't necessarily mean it will return.

Good luck with your decision x

Hi Tasha thanks for your reply. When you say the retinopathy burns itself out, do you mean after it has been burnt away with the laser, if you are well controlled it does not usually return? That's what I am hoping for but I know it does not always happen for everyone.

I kind of feel like I don't really have a decision to make as such now, I've been told that I should be able to conceive after they treat my left eye and it stabilises. The right eye was treated in pregnancy and seems to be ok now, so I'm cautiously hopeful that the same will happen with teh left. All being well, we will go on to TTC. If for some reason it doesn't I think I would have your dilemma but I'll cross that bridge if and when I get there.

It's annoying as the period since I got pregnant has been the best control I've ever had, hba1c's generally below 7, one 7.5 but the rest all in the 6's, but the retinopathy has progressed, which I think was the cumulative effect of years of poor control followed by an unplanned pregnancy and nosedived hba1c. Luckily my retinopathy didn't go completely haywire during my pregnancy and it was only at the very end that I had laser, they were going to do my left eye too after I'd had my baby but left it because it was borderline...well it's caught up now so I don't know why they didn't just do it then, I suppose they don't like to laser too readily just in case the eye gets better on its own?

I really feel for you , this is a difficult dilemma as there's so much uncertainty, so we will never know what would have happened if we dont' go ahead.

I just feel blessed that I have the one child already, although I'd feel sad if he grew up an only child. I guess there are lots of people who for whatever reason only have one child, and that's better than never getting to be a mum at all, but I do want two, to complete the family. I don't want to feel like the diabetes has had such an important and significant effect on me as to deprive me of a second child.

I wish the best for you, whatever you decide.

 

[fevold]

Hi anticarb, noone can tell you a definite yes or no to your question, but we can offer our own advice. I have been type 1 since I was 8 yrs old. At 30yrs old "SURPRISE" I had my son (now a healthy 12 yr old) I had alot of trouble getting back under control when he came along, but finally did. At 40yrs old "SURPRISE" again. (We weren't supposed to be able to have children) I was pregnant with my daughter. Not so lucky. She was stillborne at 28 weeks. she also had hydroencephalus because of complications from my body not reacting well to the hormones. We tried one more time on purpose and lost that one at 18weeks. I still haven't bounced back from that in over 1 year.
So my point is this, at your age, be VERY careful for your and the baby's sakes. Lots of women are able to have successful pregnancies at your age, but with your previous complications, they could be much worse with each pregnancy following.

Good luckand prayers to you,
fevold

 

[the_anticarb]

Thankf fevold. Apart from the retinopathy, everything in the pregnancy was fine. This despite my high hba1c at conception which won't be happening again. I've been told the retinopathy should stabilise post laser and that if it does we'll be good to go. So it would take a lot to make me decide not to have a baby, unless the retinopathy was not stabilising I can't think of anything else that would stop me.

I am very sorry to hear of your losses, they must have been devastating. this disease we all have is very cruel.