Should I have another baby? (retinopathy)

[the_anticarb]

I know no one can give me a definitive yes or no, but I have retinopathy and during my last pregnancy it worsened towards the end so I required laser (first time I'd had laser). Since then it's not required any more laser but I've been under three monthly appointments at the eye hospital and whilst it hasn't got much worse it hasn't got much better either.

Now I want to have another baby. Is this asking for trouble?

I've heard that the retinopathy in pregnancy is of a less permanent nature than that caused normally, by high blood sugar.
Does anyone know if this is true?
I really feel caught between the devil and the deep blue sea here, if I have another baby and I get really bad eyes I will always regret it, if I don't have the baby I will always wonder if I was worrying unnecessarily.

One thing to note, I dropped my hba1c very rapidly last pregnancy from 9.6 to 5.9 within weeks, but this time around it has been under 7 for a while.

The research seems to say that even with a good hba1c, pregnancy is not good for retinopathy due to the growth hormones.

This is causing me much torment as I don't want to let my diabetes limit my dreams but don't wanna go blind either.

Can anyone help?
PS the doc has not been much use, said it wouldn't stop her if she was in my shoes but i may need more laser if I go ahead.

 

[Wallycorkers_ghost]

Forget the science, follow your heart. He/She who dares, wins.

 

[the_anticarb]

I'd love to do that Wally, but don't want to go blind in the process!

 

[weeezer]

what a dilemma. i hope someone who has been in this situation can come along & comment. i developed background retinopathy just after my second pregnancy. i am very hopeful that constant vigilance & control (hmmm and a teaspoonful of luck?) will keep that where it is. i think the speed i got my A1c in the 5s was a contributing factor. like you say, you could be pre-armed this next time round and keep it at a constant before conceiving. altho a truly hard decision to make, i know what i'd do (unless someone who had been in exact situation came along to warn me otherwise) - i'd go ahead with a super controlled A1c before even trying to fall pg.

not that this opinion helps any!

keep bumping this daily in case another T1 mummy can identify x

 

[the_anticarb]

Thank you for your reply Weezer. I am going to see a private consultant, top retina specialist in my part of the country, next week. It costs megabucks for a consultation with this man but may be one of the times when going private is actually worth it!
I have found the NHS consultants shy away from telling people not to have a baby, I have asked a couple and they've said I should if I want to, but it's my risk to take isn't it, so it's easy for them to say that. What if I have one and go blind/sight loss?
This has really, really been doing my head in to the point where I am waking up at night worrying about it/can't stop thinking about it. I have a feeling this may be the hardest decision of my life.
DIABETES SUCKS!!!!!!

 

[Wallycorkers_ghost]

I'd love to do that Wally, but don't want to go blind in the process!

Keep those BG numbers down and that will not happen. You know how to do that.

 

[Jen&Khaleb]

Wow, you got me thinking asking this question. I kind of think if you are over 30 maybe just settle for the child you have. I'm just thinking that adding age to diabetes would make it much riskier. If your under 30 I'd say go for it as the younger you are the better you are at fixing damage. Kids tend to come along a bit unplanned sometimes and are just meant to be anyway. All the best with whatever decision you make.

 

[the_anticarb]

I'd love to do that Wally, but don't want to go blind in the process!

Keep those BG numbers down and that will not happen. You know how to do that.

Wally, there are people on here who've done that and still their retinopathy has got worse. It's ironic but true that during my last pregnancy I had the best blood sugar control I'd ever had, I was testing/injecting hourly towards the end and as close to a functioning pancreas as could be. If I'm going to have retinopathy I wish it would at least be logical and improve when my blood sugar control improves, not worsen. I agree that a lot of this due to the rapid drop in hba1c when i found out I was pregnant (9.6 to 5.6 within weeks) which won't happen this time, but a lot was also due to circulating growth factors, which a pregnant lady will produce, nothing you can do about. Unfortunately it also makes those pesky new capillaries grow too.

JenandKhaleb thanks for the advice, I am actually 35 yo, I know I am very lucky to already have one baby but I'd like two if possible. Anyway I am seeing a top retina specialist privately next week and I hope he will have some good news for me. They may be able to pre emptively laser my eyes early in the pregnancy to stop new growth before it starts, I know if i do decide to get pregnant it will be a very unsettling time for me, I will spend the whole time worrying and need to decide if its worth it.

 

[phoenix]

Hi,
I've been coming back to this one There isn't a right, yes or no answer, I don't think anyone can give one.

Unless there is any reason for a definite no, which I doubt, you'll have to listen very carefully to what the doctor says. Perhaps take notes so that you remember exactly what he says latter. I certainly think that I would ask the specialist what their experience has been with patients in similar position.(ie second or subsequent pregnancy) Is your partner going to the appointment? if it were me I would want my OH there.
One thing to think about is how well you coped during the last pregnancy. I know that you were very worried at times . You have to think of how well you will cope with pregnancy, a toddler plus this additional worry. There's less time to sit and think about things in a second pregnancy but it is also (in my experience) much more tiring and you don't necessarily get the time to take as much care of yourself as the first time round.

I did try to find some real evidence to help. I found one study that found fewer retinopathy problems in second pregnancies than first,
http://onlinelibrary.wiley.com/doi/10.1 ... 2C9.d02t02 ... but TBH it's an old paper and I I haven't yet found an newer one. Perhaps the specialist is aware of the literature.

Good luck, let us know what the specialist says.

 

[the_anticarb]

Wow, you got me thinking asking this question. I kind of think if you are over 30 maybe just settle for the child you have. I'm just thinking that adding age to diabetes would make it much riskier. If your under 30 I'd say go for it as the younger you are the better you are at fixing damage. Kids tend to come along a bit unplanned sometimes and are just meant to be anyway. All the best with whatever decision you make.

Jen I note Khaleb also has downs syndrome as well as diabetes. I found this which may be of interest

People with Down's syndrome, who have three copies of chromosome 21, almost never acquire diabetic retinopathy. This protection appears to be due to the elevated levels of endostatin,[12] an anti-angiogenic protein, derived from collagen XVIII. The collagen XVIII gene is located on chromosome 21.

 

[the_anticarb]

Hi,
I've been coming back to this one There isn't a right, yes or no answer, I don't think anyone can give one.

Unless there is any reason for a definite no, which I doubt, you'll have to listen very carefully to what the doctor says. Perhaps take notes so that you remember exactly what he says latter. I certainly think that I would ask the specialist what their experience has been with patients in similar position.(ie second or subsequent pregnancy) Is your partner going to the appointment? if it were me I would want my OH there.
One thing to think about is how well you coped during the last pregnancy. I know that you were very worried at times . You have to think of how well you will cope with pregnancy, a toddler plus this additional worry. There's less time to sit and think about things in a second pregnancy but it is also (in my experience) much more tiring and you don't necessarily get the time to take as much care of yourself as the first time round.

I did try to find some real evidence to help. I found one study that found fewer retinopathy problems in second pregnancies than first,
http://onlinelibrary.wiley.com/doi/10.1 ... 2C9.d02t02 ... but TBH it's an old paper and I I haven't yet found an newer one. Perhaps the specialist is aware of the literature.

Good luck, let us know what the specialist says.

That's an encouraging paper Phoenix. I am lucky to have a supportive partner but I don't want him to come to the appointment with me, I think because if the specialist says stuff to suggest we shouldn't have more children I don't want this to upset my partner, I want to go away get my head round it and then tell him. Although we will make this decision together in many ways it is my decision first, as it is my body that will suffer the consequences.
I think a lot will depend on the state of my eyes at the moment, and whether they are getting worse or stabilising. I do believe that my rapid drop in hba1c contributed to the problem last time, and it would be less damaging for my eyes second time around with a low and stable hba1c (6.9 last time I was tested).

It may be that if my eyes are not stabilising I leave it a year and see again then, not ideal as I don't want to have babies into my late 30s being a diabetic (i'm 35 now) but another year max would be ok.

That feels less final than saying 'never', and gives the chance for any improvements to occur. It would also give us the chance to consider other options, such as adoption, or just being a one child family.

I guess it all boils down to what the consultant says on Tuesday - I will keep you posted.

 

[Jen&Khaleb]

Jen I note Khaleb also has downs syndrome as well as diabetes. I found this which may be of interest

People with Down's syndrome, who have three copies of chromosome 21, almost never acquire diabetic retinopathy. This protection appears to be due to the elevated levels of endostatin,[12] an anti-angiogenic protein, derived from collagen XVIII. The collagen XVIII gene is located on chromosome 21.[/quote]


Wow, I didn't even know that. This is the first benefit of having an extra chromosome I have ever seen. Being over 35, would you test for Down syndrome or other chromosome problems? I was actually 33 when I fell pregnant with Khaleb. I have another child who is now 17 that I had when I was 21. I do somewhat regret going back for another child so late and would have been happy just having the one. I think deep down we all have that desire to procreate more than once. I have weird thoughts at times that if my older child doesn't marry, have kids or had and accident and died I would have no prodgeny to send to the future. If I had had more children the chances of this would be much greater. Weird hey?

 

[claymic]

oh dear..i have been reading this post and now i am really

i am going on 34 this year and i would like to have a baby but might not be possible for a couple of more years. I know i need to get my bs well under control before even thinking about it...but I am realising that maybe i should just give up hope to ever have kids.....funny thing is i never been broody before lately, now it has hit me like a truck at 100mph.... another reason to feel a bit despaired about diabetes etc....

 

[catherinecherub]

Thank you for your reply Weezer. I am going to see a private consultant, top retina specialist in my part of the country, next week. It costs megabucks for a consultation with this man but may be one of the times when going private is actually worth it!
I have found the NHS consultants shy away from telling people not to have a baby, I have asked a couple and they've said I should if I want to, but it's my risk to take isn't it, so it's easy for them to say that. What if I have one and go blind/sight loss?
This has really, really been doing my head in to the point where I am waking up at night worrying about it/can't stop thinking about it. I have a feeling this may be the hardest decision of my life.
DIABETES SUCKS!!!!!!

Hi,

Regardless of what type of diabetes we have, I think your post has touched a lot of us.

Get the best advice you can from professionals would be my way forward. Whilst other forum members can give their well intended advice, you are the one that has to be sure for yourself, a possible new baby and the child you already have as well as your husband.

I hope that you will be more enlightened after your appointment and wish you all the best whatever you decide to do. This is far from an easy decision but please do not stress yourself out. You will gradually come to terms with whatever is the best way forward.

(((hugs)))

 

[the_anticarb]

oh dear..i have been reading this post and now i am really

i am going on 34 this year and i would like to have a baby but might not be possible for a couple of more years. I know i need to get my bs well under control before even thinking about it...but I am realising that maybe i should just give up hope to ever have kids.....funny thing is i never been broody before lately, now it has hit me like a truck at 100mph.... another reason to feel a bit despaired about diabetes etc....

I'm sorry if this post has made you feel that way Claymic. Its really not that hard to have a baby if you're diabetic unless you have pre existing complications such as retinopathy or nephropathy and even then it is still possible. But as to actually going through a pregnancy, whilst it was difficult in terms of it required a lot of effort to monitor my bs's etc, it was perfectly do-able so it wasn't that hard IYKWIM. Also it's only for 9 months (8 by the time you find out I suppose!) so it's a temporary thing. Why would you not want to have a baby? If you're well controlled before and don't have complications (you're type 2? so probably don't?) then I don't see any reason why you can't have a baby. My mum is diabetic and had three kids - in the seventies before blood testing kits even existed - and we all came out fine. She had to spend the last two months in hosptial but thats only because they could only test your blood sugar in hospital in those days. She had vaginal deliveries at 38 weeks for all of us and both she and us were fine!

FYI my last pregnancy was accidental, now that can be a problem for diabetics, as I rapidly dropped my hba1c, exacerbating the retinopathy, and I was very lucky not to miscarry or damage the baby (Hba1c was 9.6 one month after conception). That caused me an enormous amount of stress throughout the pregnancy but if it had been a planned pregnancy and I'd got my blood sugars well under control before conceving, it wouldn't have been an issue.

 

[weeezer]

"I have found the NHS consultants shy away from telling people not to have a baby, I have asked a couple and they've said I should if I want to, but it's my risk to take isn't it, so it's easy for them to say that. What if I have one and go blind/sight loss?"

you're right it is easy for them to tell you it's your decision, but they really would be warning you against it if it was there was a proven/high possibility of making your retinopathy much worse...wouldn't they? (i say this even with a HUGE mistrust of medical professional's. i've been fobbed off many a time! but think they always have best interests of you & baby at heart when dealing with pregnancy etc).

fantastic that you can see top retina specialist...perfect person to address all your concerns - and hopefully knowledgeable about what the risks are for someone in your situation. hope he's come across the same situation before and can reliably advise you. *emoticon with crossed fingers & toes!*

not surprised it's been keeping you awake! i think once you're a mummy it's harder to deal with these worries because it impacts your children. i worry far more about what the future holds because i know any health issues will affect my kids. i would LOVE another child, but have really struggled with all sorts since my last baby was born (physical & mental health!), and find it hard to keep an even keel, so think i need to let go of my yearnings! but that is after 5 years of trying to have my little girl (started trying again after my little boy was 2)...i think another pregnancy & baby would make life complicated enough for me without the diabetic aspect, and as we know, in pregnancy that part of it becomes all consuming. but i've got my 2, i'm blessed. had this been my dilemma before falling pg with no2 i would've accepted the risk because my desire for another baby was all consuming.

is your mum t1? mine is...she became diabetic just after having me & when she had my brother in 1980 spent the last 6 weeks of pregnancy in hospital - where everything that could go wrong did! but she was fine in the end! (even after being told she had days left to live! but that's another story!!! medical incompetence in reading test results :thumbdown: ) interested to know re type because they told me it was totally unrelated that i was type one and so was mum. not so sure myself.

claymic - don't worry, you're not too old! as long as you've got a handle on your levels before conception you're all set! like anticarb says, it's a temporary ultra strict control phase, and funnily enough, easier not to get too frustrated with because you're doing it all for your unborn child. i was 34 when i fell pg last time, and had her at when i was 35. i was (ha still am!)a little bit more knackered than my 28 year old self was in pregnancy, but not so it was a problem.

 

[the_anticarb]

You're right Weezer i'd like to think they would have said something along the lines of 'make sure you get your eyes seen before you think of conceiving again and wait until your condition is stable'...if there were real concerns about me going through another pregnancy. A glimmer of hope today, I phoned my doctor about something else to do with my diabetes but I got him to look at the letter from the eye consultant last time i was seen (they send letter to GP but not to patient), which was my real motivation for the call, and the last time I was seen they said it was pre proliferative retinopathy not the proliferative sort.
I'm seeing this as a good thing as I had laser towards the end of my pregnancy so I thought that meant I'd developed the proliferative kind which is the kind which can cause the problems.
I'm feeling a bit more confident now that maybe my worries are unfounded and my eyes are not bad enough to prevent another pregnancy.
I guess lots of diabetic women have pre proliferative retinopathy, and have ok pregnancies so long as controlled beforehand.
I also know that they can do laser early on, at the earliest signs of any changes, and if I have to go private during pregnancy to make sure I get the best care I will do. Seeing this private consultant next week will at least hopefully give me the best knowledge of my condition so that if I am not getting what I think I need on the NHS I can push for it, and always go private then if I still feel I'm not getting the best care.
To answer your question about my mum, she is not type 1 but has MODY, that not very well understood kind of diabetes that occurs in young people but isn't really t1 or t2.
I'm feeling slightly less stressed about the whole thing now, until I see the specialist next week I guess nothing's certain, but at this point I think with the right level of care and control I probably can go ahead with planning a second child.

Will keep you posted!

 

[noblehead]

Whatever decision you make anticarb I hope it all works out for you!

 

[the_anticarb]

I'm reconsidering whether to see the private specialist now. I've got an NHS appointment soon anyway so I'd only be seeing the private guy to get some reassurance, and perhaps have a little longer to talk to him than the NHS guys. It's £200 per consultation. I'm thinking that surely if my eyes were really bad someone would have said to seek advice before having a baby? I asked two NHS eye doctors whether I could have another baby and they both said yes straight away although one said I may need more laser.

My diabetic consultant didn't say I shouldn't try either when I told her I was thinking of trying for a second, and that I'd had laser in my first pregnancy. Also I thought I had proliferative retinopathy but it's not the proliferative kind but the pre proliferative. I had one bout of pan retinal laser and one of focal laser, both on the same eye, during pregnancy. Was told that my eye had responded well to the laser post partum. They were thinking of doing some laser on the other eye but decided in the end that there was no evidence of new growth so they left it.

To anyone with any experience of retinopathy, am I worrying about nothing? Should I still see the private consultant (at £200 a pop) ? I am pretty sure we will go ahead with trying to have a second baby, unless I am explicitly told by someone that it will be a bad idea. My hba1c has been below 7 the past year btw so shoudln't have a prob with 'early worsening' which was an issue before. I know there are no guarantees, but if the risk is low I'm willing to take it.

 

[catherinecherub]

If I was you I would search for the Private Consultant's profile and see if he is totally private or does work for the NHS as well.

I paid £150 when I was first diagnosed with Type2 and went to a BUPA Hospital and was given exactly the same consultation as I had with my G.P. regarding diet, explaining what was going on in my body, possible complications and was given the necessary checks. It was all done in a very pleasing environment and that was the only difference. The G.P. consultation was probably better because I was given some copied documentation as to how to take advantage of a low G.I. diet, book titles to help me further all which has served me well.
I do know that the Consultant I saw privately also works as an Endocrinologist in my local NHS Hospital as has a good reputation there for all things diabetic related.
I think I used a private appointment for my own reassurance and was probably clutching at straws in thinking he could tell me more than my G.P. and looking back it was a waste of money but I did consider it well spent at the time. My card details were taken by reception prior to the appointment and whilst I was in the waiting area. :lol:
I know that your concerns are totally different than mine were but ask yourself, why would his advice be different from the Consultants you have seen? He will have done the same training.