Facts about pregnancy with D: too scary, or helpful??

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Facts about pregnancy with D: too scary, or helpful??

Postby Kate » Fri Jun 13, 2008 6:34 pm

Hi everyone -

Interested in your thoughts about what level of reality and scariness is reasonable to share with women considering pregnancy or pregnant.

When we evaluated the green book, one of the overwhelming bits of feedback was that people wanted more info .... I do think it's odd that we make a big fuss abotu diabetes and pregnancy and it's basically impossible to find info on what can go wrong, any mention of it SUPER quickly moves on to just keep control good and you'll be fine ... but it is SUPER good control needed, massive effort, and do you actually want to know the whole truth????

If not, DON'T read on!

Here's a few stats I found recently:

Pregnancy for women with Type 1 diabetes carries significant risks for both mother and child. Rates of
still–births have been shown to be almost twice that of the general population (McElduff, Ross et al. 2005).

Significant pregnancy complications are more common in women with Type 1 diabetes including
macrosomia (large babies), pre–eclampsia and congenital malformations of the child (TEMPLE, ALDRIDGE
et al. 2006).

Caesarean delivery is three to four times more frequent in pregnancies involving diabetes
(Australian Institute of Health and Welfare 2002).

Pregnancy can also cause the rapid progression of
other complications in the mother, such as eye and kidney disease (McElduff, Cheung et al. 2005).

Australian Institute of Health and Welfare (2002). Diabetes: Australian facts 2002. Canberra, AIHW.
McElduff, A., G. P. Ross, et al. (2005). "Pregestational Diabetes and Pregnancy: An Australian experience "
Diabetes Care 28: 1260–1261.
TEMPLE, R. C., V. J. ALDRIDGE, et al. (2006). "Prepregnancy Care and Pregnancy Outcomes in Women With
Type 1 Diabetes." Diabetes Care 29: 1744–1749.

Is this too much ???? Or does it explain, why all the fuss???

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Postby Lyndal » Fri Jun 13, 2008 7:21 pm

While I generally think the more information we have the better... Sometimes the delivery of the facts can be skewed. Like you said above, yes there are greater risks attached to a diabetic pregnancy, a lot of us girls have been told by well meaning old aunties that it's such a pity we could never have children! While these days it is perfectly possible to have a healthy baby, with much hard work and bsl paranoia.

How about balancing the info in such a way that while ... are the possible risks/complications there is ... % chance of having a healthy baby. I would have appreciated more information when I was pregnant, and health professionals were very reluctant to say anything that didn't have a positive spin and as a result I was unprepared when I did have pre eclampsia, induction at 35 weeks and a baby with macrosomia, jaundice and tiny holes in her heart.

That baby is now in grade 1, perfect weight for her height, runs from morning til night and the heart murmur cleared up before her second birthday.

Yield to temptation, it may not pass your way again.
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Postby Catapult » Fri Jun 13, 2008 7:28 pm

If I were planning to get pregnant, I would want all the facts too. Otherwise, how can you judge the risk? SOme women out there might be thinking that 100% of pregnancies with D end up having C-section, so the actual lower statistic may bring a sense of relief.

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Postby Sara » Fri Jun 13, 2008 7:35 pm

I think it's a tough one...
I was told about all of the scary things by my obstertrician when I was 7 weeks pregant. It scared the crap out of me but made me determind to take extra special care of myself. I guess the biggest worry for me during my pregnancy was knowing that I couldn't control the diabetes completely, and that to some degree, the health of my baby was a little out of my hands. I guess the more info that we have out our disposal, the more capable we are at making good decisions. In hindsight I am really grateful for that frank discusssion with my obstertrician....
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Postby Mel » Fri Jun 13, 2008 8:02 pm

It's funny that you should mention this, a friend of a friend was just saying that she was 39 and having her first baby and she was totally freaked out by the Drs always telling her how old she was and about all the extra risks.

My point in response to that I think you should be informed about risk, but adequately informed.


Significant pregnancy complications are more common in women with Type 1 diabetes

Yes, but say the risk of a particular complication, is 1 in 1000 but with d it is 2 in 1000. So having d doubles your risk-sounds terrible but it is sill only 2 in 1000 as opposed to 1 in 1000. Most people could live with 2 in 1000 but would feel unnecessarily stressed if told that d doubled their risk of a complication.

The other factor, is of course the relationship between control and pregnancy/birth complications. So it would be good to know that with an average a1c of 6 your risk of various comps is increased by x% compared to a non-d birth and that remains unchanged with an a1c of 10 OR does the risk reduce heaps with the lower your a1c? Of course, I assume the risk of various comps will differ in their relationship to control but a general idea would be good.
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Postby Rachel » Fri Jun 13, 2008 8:23 pm

The more information the better!

My pregnancy was 3 years ago... I experienced macrosomia, pre-eclampsia, emergency caesarean at 34 weeks, a rapid progression of retinopathy eye disease and a newborn in SCN for 3 weeks. I never thought that with good control and the recommended Hba1c that I would have any trouble but I did in my last trimester.

It just shows that these things can happen and it would be best if we are well informed of the risks no matter how prepared we are.

I must mention that I was not on the pump for my first pregnancy. This is my one regret.

I also found the book Diabetes and Pregnancy by Alison nankervis to be very real and helpful although at times I find it to be a little scary and off putting.
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Postby Kath » Fri Jun 13, 2008 9:35 pm

I agree that more information presented well is an excellent idea. My partner and I have been talking about children and when etc etc, and this information is so hard to come across without it being all doom-and-gloom and being scary, or being rather flippant and not adequately addressing issues that people with diabetes should be aware of. The green book was great to read, but more information in it would be great (I think :D).
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Postby belinda222 » Fri Jun 13, 2008 9:35 pm

I think the more info the better. It can be a little scary knowing the risks but it does prepare you. My D has never been in better control than when I was pregnant and there were still complications with both of my pregnancies and births. It was all worth it of course, my two girls are happy and healthy.
Belinda :)
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Postby Jen (nli) » Fri Jun 13, 2008 10:43 pm

Interesting question. I think that its more than "just keep your control good and you'll be fine". Can we get rid of that message all together? I don't think that's an accurate message.

The thing is - all pregnancies carry risks. If we write literature that focusses on diabetes and pregnancy, we run the risk of saying "if you have a problem - diabetes will be the problem". This could be the case... and ... it may not be. Let write something that acknowledges diabetic complications, but also looks at other complications, and also at what goes right.

Controlling the uncontrollable:

Managing diabetes during a pregnancy takes a lot of effort. You somehow manage to control things that are extremely difficult to control. You conquer the post meal spikes, you conquer the quick onset hypos, you conquer your desire to sleep and you get up and do the overnight tests, you keep on top of the spiralling increase in insulin as the pregnancy progresses, you control your diet (despite cravings), your exercise - you control your emotions when other things slip out of control and you don't have the answers. So much of a "diabetic pregnancy" is about control. And we do it (brilliantly often...). We do it because we believe that by doing all of that, we are giving our babies the best possible chance of being healthy.

And yet... things still can go wrong. Despite all of our commitment and energy into "keeping things under control" - things can be completely out of our control. And we are not alone here - non-diabetic women have this as well.

I suggest that any literature on diabetes and pregnancy points this out, because otherwise I think when / if things do not go as planned (and how many pregnancies do go completely as planned??!?) - then the emotional and mental risk women with diabetes have is that they will blame their diabetes, they will blame themselves. And this really concerns me.

In my pregnancy - I had an hba1c in the low 5s right through - all the medical staff kept saying "Wow - you've managed to control your diabetes well!" ... but I got the first signs of retinopathy (my first complication!), Pregnancy Induced Hypertension, cholestasis (liver problem where you itch - awful!), I was hospitalised a total of seven weeks during my last trimester, I had an emergency caesarian, and then had a post-partum haemorrhage necessitating another operation (lost my belly button because of the scarring), blood transfusions, and a four day stay in ICU (at a different hospital to my daughter). It took me 6 months to get off the medication for hypertension, and it took me over a year to recover physically. My recovery was a lot better than many.

My daughter was never as ill as i, but even so, ended up in the special care nursery for low blood sugars and then almost got put in NICU because her veins collapsed and they couldn't input the drip. She had mild jaundice. Interestingly, she wasn't big - she was tiny and although technically born just short of 38 weeks - has reacted very much like a prem. baby. Its only now that she's nearly 3 that she's caught up on many developmental tasks and is now (finally) clawing her way back onto the charts for weight. We've been very, very fortunate because within a week, we were together as a family and we went home together... and we are all doing fine. I have a number of (non-diabetic) friends and close relatives that were not as lucky.

At the end of the pregnancy we had many meetings to determine what went wrong and what the cause/s were... and some doctors immediately pointed the finger at diabetes and said "that caused everything". Other doctors were more "thoughtful" and suggested that some things were just what other women get - regardless of diabetes.

Pregnancies are sometimes difficult, sometimes dangerous, sometimes they result in great losses and sometimes they result in great joy... and that is either with diabetes or without. That is just pregnancy.

I know I felt very strongly after going through what I did... I grieved for the fact that I did so much work on my diabetes and then succumbed to problems that weren't related to diabetes. I soooo hated myself for stuffing it up - for even thinking I could attempt to be a mother! How dare I do this to my husband - my (then unborn) child??!!. I blamed the fact that I was a diabetic on all of my problems, I blamed ME. If it hadn't been my mum who just happened to say the right thing at the right time... I think I would have got very depressed. I still clearly remember sitting alone on a hospital bed after being hospitalised for the fourth time that pregnancy... and just absolutely hating myself "How dare I "[i]a diabetic" dare to do this to my child! What was I thinking?". [/i]

I had nothing else to blame but the diabetes. Wasn't diabetes the reason why I was categorised as a "high risk pregnancy"? And wasn't diabetes the reason why I was being monitored so closely? And wasn't diabetes the reason I was sitting alone on a hospital bed with problems?

Apparently though - it was not ALL because of the diabetes. In fact, many of my problems might have happened despite diabetes.

I was completely mystified and unprepared that something other than diabetes had got in the way.

For years, I felt I'd been running a marathon with a dodgy leg. I'd put in years of training (physical and mental) to get my dodgy leg over that finish line... and as I can see the finish line - and as I'm thinking "yes, I'm going to make it... this work has paid off", as I was about to anticipate having conquered my biggest life challenge - - - my other leg fell off.

My points are these:

- maybe prepare women for the fact that all pregnancies can be challenging at times. That even non-diabetic pregnancies can have problems. Therefore, not all problems will be caused by diabetes.

- "I am more than a diabetic - and my pregnancy is more than my hba1c!"

Diabetes completely dominated my care. Even when I had problems not directly related to diabetes, my appointments with health professionals outside of the diabetes clinic were always cancelled... and I was shoved back into the diabetes clinic again! When ever anything went wrong, they rang my endocrinologist... even though it had nothing to do with diabetes... people kept asking me what my hba1c had been like, even though it was very close to a normal hab1c! I simply could not escape or separate myself from being a diabetic - even when it was irrelevant.

Consider writing the book so that it doesn't only focus on diabetes. Maybe write it so it focuses also on the woman and the pregnancy (and the bits that aren't related to diabetes!!!). Hey - its all relevant.

- educate women on what the problems might be - (not just the diabetes related problems). Flag symptoms and signs to look out for.

- reassure the woman that some things could happen and they may NOT be related to your diabetes.

- write about how the woman might cope with things should they not go as planned - where can she find support? how can she stop negative self talk / self blame? How can others around her support her? How can she keep her sense of humour? (If my husband and I did not have a good sense of humour I don't know how we would have coped). Where's the silver lining? Maybe actually write some of the positive things having diabetes gives a woman? (resilience, an ability to care for one's self, strength... ).

- when things went wrong - my extended family all blamed diabetes. Half my energy and my husband's energy went on telling them that it was not directly related to how well I'd controlled my bsls... in other words, it was not my fault. This is a risk diabetic pregnancy literature has... that if things do go wrong everyone will blame the diabetic for getting it wrong.

- so - be careful with the power of statistics. Okay so maybe "still births are twice that of the general population" but as Mel alludes to... what are the risks of this in the general population? Is it 1/1000 and 2/1000? ... is the research we are quoting reputable? Is it contemporary? Is it Australian?

- women will differ in how much they want to know. I wanted / needed to know everything... but not everyone operates like that. Can we write something that goes into things in different depths. Some women will read only so far and be happy. Others can plunge the depths and get the information they need.

- Get health professionals who have experience with diabetes and pregnancy to comment. By far the more balanced responses I have received have come from HPs who work with diabetics and non-diabetics in pregnancy... and who know it well.

- Provide hope. Many, many pregnancies are successful.
Jen (nli)
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Postby Jen (nli) » Fri Jun 13, 2008 10:45 pm

Ooops - sorry - very long post above... I should have previewed it!
Jen (nli)
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Postby melbel » Fri Jun 13, 2008 11:12 pm

Great post Jen. Just a point with the 3 to 4 times caeser rate that is soooo skewed. With caesereans only 15% are medically necessary according to WHO. yet we have a rate of 35% i this country - the rest are either elective or convenience by obs. Who is to say that the increase in caesers for a diabetic is not just because the ob is being over cautious or scared of litigation etc etc etc......
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Postby Anne » Sat Jun 14, 2008 7:25 am

Interesting topic.

I think there is no general answer, each couple will want different information. I got pretty crap information by a registrar when I asked her about risks and she was so vague she told me a lot less than I already knew. I think that it would be useful to have lots of information but that people pick and choose, depending on how much they want to hear about. On the other hand, it can become quite overwhelming ans top us from enjoying the magic of pregnancy.

My husband did not want to know all the details of the risks but I still told him some of it as I wanted to make sure that we were making a joint decision and managed my diabetes together knowing what was at stake.

I was terrified that my sub optimal diabetic control might cause damage to our baby, but I was trying as hard as I could and was already quite disabled by hypos. I had to think hard to stop worrying and choose to enjoy the pregnancy rather than constantly worry about all the things that could go wrong, particularly in the first trimester and towards the end of the pregnancy.

I got some non diabetic troubles like symphysis pubis dysfunction (pain in pelvis and sciatica) and obstetric cholestasis (itchy like mad) but for me these were 'normal' pregnancy complications, not D related.

My baby never saw a paediatrician apart from his routine brief check on day 2, I think the midwives forgot about my diabetes and his blood sugars were higher than mine when I tested him myself, as I was hypo all the time once he was born and he was just fine.

I think my best HbA1c pregnant was around 6.5% and around 8% at conception (definitely not recommanded values but all i managed). So it shows that there are other factors to bring complications than HbA1c numbers.

When I worked on a Special Care Baby Unit, I saw a newborn weighing over 5kg with a mother with T1 and her diabetes had been very well controlled throughout pregnancy, HbA1c in the 6's, definitiely other factors involved. So macrosomy and poor diabetes control, eh?

Ah, and I got my first and only spot of retinopathy in the last trimester but it resolved a few weeks after my son was born (not nice to associate baby and complications possibly long term).

I had an incredibly quick recovery from the emergency section, met friends in a restaurant for lunch with our baby when he was just 1 week old and started running at 5 weeks post c section. I had bought a static bicycle to keep fit while pregnant and my husband thought it would just gather dust but I used it 3 times a week until 2 days before I was induced so maybe keeping fit helped recovery, or I am just plain lucky.
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Postby Beck1983 » Sat Jun 14, 2008 7:56 am

I think that it is importaint to touch on some of the complications that can arrise. However they also need to know that some of the complications can happen in a healthy women that doesn't have diabetes. I wish that I had known some of the complications. Maybe I wouldn't have been so shocked that diabetes was blamed for my son being stillborn, but everyone blamed it on my diabetes even though it was well controlled. And in the end I started to blame myself.
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Postby Rachel » Sat Jun 14, 2008 9:45 am

Very well written Jen!
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Postby maccas » Sat Jun 14, 2008 6:38 pm

when I was pregnant with my 1st child 13 years ago there was no information available, only if you had gestaintional (sp?) D this I did not have so that was no help at all

I spent time in hospital throughout the pregnancy as my Bsl wasnt that good

I went into premature labour at 37 weeks, I had a natural birth, I wasnt even shown the special care nursery before my son was born so when I went in there to see him it was a massive shock even though I knew in a way what to expect. My other 2 children where by C section

I think couples should be told everything that COULD happen, back when I was preggo there was no mention of pumps etc so it was a battle to keep things on track
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Postby Cee » Sun Jun 15, 2008 3:12 pm

The management of T1 pregnancies is not perfect but better than it was 15 years ago when I was diagnosed (17yo) and given counselling on the risks of unplanned pregnancy. I think they were trying to scare me into submission and it worked. It was 14 years later that I finally tried and got pregnant. Planned, well informed and a little scared. My personal opinion is I wanted more info and more specific info. I wanted info specific to T1 not grouped together with Gestational and T2.

Following my own research (I am a health researcher but not in diabetes) I decided early on that I wanted to be treated like a normal healthy prengnant woman having her first baby. Of course I accepted that I needed extra monitoring and I have additional risk, but I had learnt there were no hard and fast rules about diabetes and pregnancy all that was repeated was 'HbA1c under 7'. So I got my HbAc1 as low as possible and left the rest to fate just like a pregnant non-diabetic has to. I achieved HbA1c in low 5's throughout. The best advice I got was from the high risk ultrasound specialist. He said, despite my great contol some things were just out of my control and that was not unique to diabetics . It reminded me that, yes I am a diabetic and this can bring problems, but healthy, uncomplicated women also sometimes have problems in pregnancy. The more I learnt about pregnancy and childbirth the more I came to realise that is it truely amazing that things don't go wrong more often.

So far as diabetes nothing went wrong, 40 weeks, 7p4oz baby no complications. OB still says I am the more boring diabetis he has ever met. However did end up with emergency c-section for reasons unrelated to diabetes.
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Postby JT » Sun Jun 15, 2008 3:48 pm

Absolutely - knowledge is power and we need to know everything to be able to make the best possible decisions for ourselves and our babies.

Why would you only want to know half the story? I feel I need that little bit of "scary but true information" to keep me motivated to do the best for my unborn child.
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Postby deviation72 » Sun Jun 15, 2008 8:00 pm

I agree - I'd rather know the facts regardless of whether they are a bit scary or not. What I want is real information - and yes, the positives are great when all we hear about are the 'dangers' of women with T1 having children, but I also want to know what might happen so that like others I can be as prepared as I can.
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Postby luluhaggis » Mon Jun 16, 2008 12:13 am

Sometimes you have to just put a stop to reading all the morbid details. I think I want to know so I have all the fact but I also want a positive spin. I cant handle the doom and gloom under the guise of advice/info. I have a friend who is not D and chose to stop reading all the info books about pregancny as she was just becoming far to stressed about it. She let her toughts move to how nature deals with things. I realise that a D pregancny is different but having been trying for 2 yrs just to get the best HbA1c and it still not happening I cant take anymore doom and gloom.

Its alredy too hard just to get to the beginning never mind trying to conceive and then the pregnancy. I was talking with a nurse last night who has had experience with D pregnancies and she siad the the amount of pressure I am under to get HbA1c of 6.5 will probably make it a lot harder for me to concieve. And shes right the stress is incredible - then if faced with all the doom and gloom stats and info its to much.
My Hba1c has never been above 7.1 - it has been as low at 6.7 but it just goes up again with no rhyme nor reason - but still not good enough for my endo. It was suggested that I take control and decide to try without a lower Hba1c my repsone was on the lines of oh no I couldnt take it if I ended up with a disabled baby as my levels were not good enough as its not 6.5. The guilt and the blame is so much. I really think this needs to be addressed in any advice material.
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Postby Cee » Mon Jun 16, 2008 3:05 pm

luluhaggis I hear you about blaming yourself if anything goes wrong. My solution was that I tried my very best and made peace with that. I told myself that whatever happens I could not have done any more. If you truely and honestly believe your HbA1c is as good as you can get it and you are under 7 and your control is stable and consistent, I say go for it. So long as it is not that you are very low or very high and the balance is a HbA1c of 7 (be objective). Under 7 is responsible and you might find that it improves once you are pregnant. I have conveived twice at about 6.8 and have then been in the low 5's very shortly after and consistently during pregnancy. Just my thoughts others might disagree...
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Postby Sharalynne » Tue Jun 17, 2008 11:55 am

I'm currently TTC and wondering if other diabetics find it better to be on a pump while pregnant? I'm not on one and won't be eligable for a year as just joined private health cover.. I find it hard to get good Hba1c levels and really want to have kids.. also all the complications that can happen with being a D and pregant nearly scares me off having kids... does anyone else have these issues??
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Postby Elena » Tue Jun 17, 2008 1:19 pm

D and other health issues scared me off having a second baby for a few years. (my first was born before D) But I regret now that I waited for so long< everything is harder when you are older.
Now I am 18 weeks, I have done my amniocentesis successfully and I am trying to stay positive.
My endo said, if I have Hblc1 under 7 throughout pregnancy statistically I have same chances as non diabetic women.
Gee, all the info about pergnancy and D so hard to find.
Now I better go for a swim in a pool.
42 years young ecstatic new mum
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