Late diagnosis of Gestational Diabetes and lack of support

[Mamatoriley]

Hi, I dont really know where to start and this will be quite long but don't really know where else to turn to.

Had reduced movements on the 26th March so went to the maternity assessment unit who booked in for a scan on 1st of April (35+5 weeks pregnant at this point)

Scan showed babies head and legs were measuring small at 33/34 weeks and tummy was off the charts measuring at 40 weeks! Also with slight polyhydramnios with AFI of 18.6. She was also measuring above 90th centile in weight. Sonographer said she thinks I need to book another scan but wanted to ask a midwife first. She ran off then came back and said 'midwife said its okay because not 36 weeks yet (1 day off!) And that all was fine.

I felt this wasn't right so once I got home I rang the Maternity assessment unit who said I'd been severely mismanaged and they want me in for blood tests and to speak to a consultant and that they'd put an incident report in.

So I went in, had blood tests for infection and diabetes. Consultant was great said she would like me to have a scan in a weeks time and explained risks of having a big baby and that we were heading towards a c section (thats fine by me rather baby not get stuck or have any complications or risk an emergcy c section, would rather it be planned).

Rang for my bloods the next day which showed im over the normal threshold for diabetes and the midwife I spoke to said she would send a referral to the diabetes consultant. However this was Friday and it was Bank Holiday weekend so said I would not hear back until today.

I rang the scan place as wanted to speed things up a bit who said 'not received referral yet will ring you, just keep phone on'. Then rang MAU again as some of my results haven't come back yet and she said could take 2 weeks and also dont do growth scans after 1 week usually wait 2 or 3!! So didnt know why consultant had said that. Still waiting for diabetic consultant to ring/book an appt (granted it is only 11) but I just feel like there is no urgency here.

Maybe I'm panicking for no reason and the fact they are being so calm and slow about things is because all is okay. However, I have very little trust now as feel I have been let down. I've read that they usually induce/c section for GD around the 38/39 week mark which is 10 days away. So I really feel time is of the essence.

I'm not sure if this was more of a rant or me asking for advice? I just don't know what to do and this is playing havoc on my mental health. Can't sleep, very tearful. Its all just driving me a bit mad really. Any suggestions on anything I can do to make this better? I guess I just have to wait really

First things first. Join the Gestational Diabetes UK fb page and have a look at their website.

Change your diet now to prevent any further excess sugar exposure to the baby.

I have GD and my team are also not around on weekends, they only do one clinic a week. It is standard to only do growth scans 2-3 weeks apart, if they suggested 1 week it may have been for rescan purposes to double check the measurements.

I’m having a c section too and my hospital only give 7-10 days notice for a date, so you wouldn’t get much notice anyway.

Please try not to stress as it can cause your sugars to be higher.

I was diagnosed early and got given a test kit but because you’ve been diagnosed so late I’m not sure what policy is. But you can help yourself but researching the diet and starting now xx

I had GD in my last pregnancy (fully expect to get it again this time but it hasn't kicked in yet). GD is classed as 'high risk' pregnancy and should be treated as such so it is no wonder you are stressing - it isn't good enough that they are not keeping you updated and are being a bit flippant with the whole thing!

I would chase again, ask to speak to the consultant and tell them what you have said here - you are concerned and it is affecting your mental health.

My son was measuring off the scale too even though the GD was controlled so I was induced at 38+2 which ended in EMCS at 38+4. He was absolutely fine and all was well so don't worry too much about the birth etc. I am sure everything will be great, but you definitely need better treatment than you are receiving! To stop being so worried you need a plan in place and they need to be organising that for you. Pester them until they are totally sick of you :) xx

Oh yes and as @Leavemealone2 said, definitely have a look around the GDUK website too! Absolutely amazing, and has lots of info on birth with GD etc. xx

www.gestationaldiabetes.co.uk/

Can you phone the consultant's secretary and ask them to speak to the consultant (phone hospital switchboard and ask to be put through to Dr X's secretary).

It's very strange that there often don't seem to be investigation and treatment pathways for quite common conditions. I've found this a few times for both maternity and other issues. GD is really common - why does it feel like you're having to deal with an unprecedented situation? Baffling. But it's not you.

Thanks ladies, thats all really helpful and reassuring. I have already switched to wholemeal bread and pasta, cut out all sugar, decaf tea with sweetners instead of sugar, no chocolate, cakes, sweets or crisps etc been doing this since I found out on Friday so hopefully it does help and isn't too late to make a difference.

Thanks @Amz6219, like you say I just need a plan! Its the lack of plan and not knowing whats going to happen that I'm finding frustrating. I just want to know whats going on. Especially as I have a 6 year old that I need to arrange care for etc. Baby is moving lots so thats very reassuring. Will give them til 3ish and then as you say will pester. I really feel time is of the essence and I dont have long left until due (24 days )

@stuckinarutatwork I don't even know who the consultant is, but I may ring switchboard and say 'I need to speak to maternity diabetes consultant' or something and hopefully they'll know!

@iguanadonna I know! It is truly baffling, I dont quite understand how all this has happened so fast but no one really seems to know what to do. Fingers crossed its sorted in the next few days or so.

Hi OP. I have type 1 diabetes. Wholemeal breads/pastas etc still have a lot of quick releasing carbohydrates so just be aware of that. If you eat fibre and protein at the same time, that will slow down how quickly it raises blood glucose so that will help. Things like more traditional meat, veg and potato meals are generally lower in carbs than pasta or rice meals so might be easier right now. Best wishes. I had a C-section at 37.5 weeks due to this (planned, brought forward by a week). The delivery was normal and baby was fine.

Fat also slows down carbohydrate release, should have mentioned that. Basically, eat meals with more than one type of nutrient

@MujeresLibres aww thanks you so much thats really helpful! Thank you, this is all new to me and no one has told me anything, have been increasing vegetables etc, suppose its a learning curve and don't have very much time to learn .

Definitely pair your food. I also have GD. I have cheese with everything and it really works for me. I cannot have bread of any variety but ryvita crackers are fine. Sugar free Hartleys jelly doesn't raise my levels at all so worth looking at for that sweet treat.

I had GD a very long time ago so and the particular things I remember as absolute stars for eating and keeping my sugars low were green veg (not so much root veg), couscous, soup, cheese, any kind of protein. If I needed bread I had rye bread as it was lower. Pitta breads stuffed with salad and a bit of protein were good too. I think I just binned pasta and bread for the most part. Lots of sugar free stuff - jelly, squash, diet coke etc. I also found it good to go out for a couple of shortish walks a day, that helped too.

Best of luck, you've not got too long to go. I hope you manage to get some answers about what's next soon.

@Catlady21 good to know, I have cheese with most things as well (always loved it and ate lots of it). Will pick some crackers up too. Thanks for the tips its really appreciated, just hope the cheese doesn't make the baby even larger

I was diagnosed at 36 weeks in October and had basically no support. The gestational diabetes Fb group is great - join now! I was only borderline when diagnosed (had a scan after reduced movements, found a big baby and slight polyhydramnios like you, so had GTT and was borderline) so stayed diet controlled easily. Had a healthy 96th centile baby on my due date, natural delivery and waterbirth, so don’t panic. Ask for a blood sugar monitor ASAP so you can keep on top of your sugars.

I was diagnosed with borderline GD at 30 weeks with ds2. Was told he'd be huge and so was induced 2 days(!) early. Had vaginal delivery but he was back to back so was turned with ventouse then pulled out with forceps. Midwife put him on the scales and said "oh! He's only 8lb6oz!" So not huge at all. Scans are so unreliable for weight. Ds1 was 9lb1oz which wasn't predicted at all. Dd was 8lb14oz. Ds1 was by far the easiest so try not to panic about baby's weight. Good luck.

Hi OP, if you’re not having much luck getting hold of a diabetic midwife then I would contact PALS for help. You need a blood sugar monitor so you know what’s going on. Whilst there’s not much you can do to impact the size of the baby now, it’s important your blood sugars are stable so that it’s easier for the baby to regulate theirs after they are born. Most trusts keep GD babies in for 24 hours after birth to monitor their sugar levels.

My GD was picked up after I started measuring large with my son. I think his tummy was 97th centile. They induced me at 40 weeks as they were worried about him getting stuck. Despite being 9lb5oz he came out no problem though!

In answer to your concern about c section at 38/39 weeks, that’s often when women are on insulin or metformin. Also a lot of these women would be induced rather than straight to c section too. If you can keep your levels stable through diet then NICE guidelines say women should be allowed to go to 40+6 before being induced.

Just want to add @Teakind (sorry, disagreeing! :) ) - I was diet controlled from finding out at 28 weeks but was induced because of his size rather than GD alone. My sugars were stable and wasn't on medication but because he was measuring over 8lb at 36 week scan they wanted to induce early. I think I could have argued that I wanted to go to 40+ but went off my obstetrician advice because I trusted her and was pretty sick of waddling around at that point anyway! :-D x

@Amz6219 not disagreeing as that’s why I was induced at 40 rather than 40+6. Although I now know that it goes against NICE guidelines to induce if the only reason is because the baby is big. It’s really hard to know what to do when hospitals have certain policies and push you towards a decision.

This pregnancy, I’ll be declining induction until 40+6 is my blood sugars are stable and the only concern is size.

Thank you for all the replies, its really appreciated. Yes would like a blood sugar monitor and then I least I know the things I have been doing so far are helping or not. That's my main worry is that baby will struggle when she is born and I really don't want that. Like you say I cant really see it making her size any different now though.

The worry they have is that her head is small compared to her humongous belly bless her so that increases the chance of her getting stuck. Hoping the sonographer was just a bit rubbish and the measurements are wrong/off. Hoping the repeat scan is more positive (not that I've been given a date for it mind you!).
Thank you for all the kind words and advice it has really helped me to relax and feeling a lot more positive now.

I think it's pretty normal for it to all take a while. I was diagnosed with GD at 37 weeks, went to a Clinic to be given a test kit at 38 and a bit weeks and c-section (only because she was breech) at 39 weeks. There was no talk of inducing early or anything (although I doubt they'd have let me go much past due date). I was already being monitored for other pregnancy complications. I used to eat apple with peanut butter. Branflakes were really bad for my levels. I did have a few chocolate covered peanuts for a little chocolate fix. Collecting colostrum is often recommended to help the baby's levels when they're born. I did wreck my nipples desperately trying to get some!

@Teakind definitely! It’s so confusing and hard to know what to do for the best! I’ve said I want to see if I get GD again (highly likely) and will make a decision further down the line, currently thinking elective section x

@Amz6219 It really is. I just went with that was suggested last time as it was all so new and intimidating. I have diet controlled GD again this time and am hoping to go to the birthing centre (agreed after a meeting with the manager there) and avoid another induction. I may well change my mind and feel safer in a hospital but it's nice to know there's options!

Hi all, just thought I'd update.

Been to see a diabetic obstetrician today and she has said to have a scan and another appointment with her in 2 weeks (!). Which would then have left 3 weeks between scans.

She then said induction would follow soon after, not sure what this means. Scan booking are useless. My diabetes appt is 21st April but booked scan for 26th and going to put in a request to change it.

Have also been given monitors for my blood sugar and have to do this 4 times a day. Said if baby is measuring massive at next scan then possible c section but still feel like they are leaving it too late and taking their sweet time. Ahh well least I have something in place. Will update again as I go along for anyone experiencing similar.

@Mamatoriley how are your readings going? It's frustrating when you have to wait so long between appointments, especially when its about something as important as how your baby is born. I guess to them it's something that can be organised quickly but to the mum it's very important to have time to get your head around it.

Do you feel happy with what to eat?