Calling All Diabetics. or anyone Need To compare notes for post-birth care plz.

[1down2togo]

when i had my son, 14 mths ago, the birth etc was okay, but i was really unprepared for what happened next.

They whisked him away to SCBU on the next floor. I had been briefly told he'd probably have to go there for a few hours to check his blood sugars, so wasn't a total surprise, what was so upsetting was that it felt like they kidnapped him.

They kept him up there for 3 days. He was in a heated cot for first 6 hours, and when i asked they said that his blood sugars were fine.

Their reason for keeping him was they kept telling me he was a sicky baby and a poor feeder.

I wasn't encouraged to visit / feed him ( bottle fed ) and felt like i was in their way when i did go up.

I was only when they got a set of twins and a poorly baby in that they then started demanding i go feed him, to the point of sending midwife in to wake me in middle of the night to go upstairs.

he was taking a couple of ounces every couple fo hours, but they said he needed to take 4 oz 4 hrly. They had inserted a nasal tube and when he stopped sucking they 'injected' the rest of his feed....which he would promptly throw back.

They also timed when i fed him and after 20mins they would take him off me and 'inject' the remainder of his feed.

He was moved 3 times in the time he was in there, ending up in a small room where they stored spare cots at the end of a corridor opposite a broom closet.

I ended up so depressed and upset that when i went to give him his feed during the night i stayed there for 5 hours waiting to catch the consultant on his rounds, he couldnt understand why my son was still there and said babies arent robots and will feed when theyre hungry.

were currently trying for another baby, and the pregnancy / labour arent a worry to me, its the after care. Was this normal? Have I / am I over reacting?

Is there anyway i can stop this happening again?

Sorry for rambling, thankyou to anyone who reads this.

[Oblomov]

Hi 1down2togo. Sorry that you had what sounds to be such an traumatic time. I am a diabetic and had a pretty rough time with ds. Ds did have low blood sugars, but I found out from Hunker, that the threshold is much higher, then what I was told.
I am sure that quite a lot of the issues that happened to me and you could be addressed and not allowed to happen, but at the time, of course I was none the wiser.
Perhaps we could investigate things together.
Then put a plan together and present it to your midwife, prior to birth, so that she knows what you would like to happen.
How does that sound ?

[Oblomov]

Have to go now. Get back to me.

[1down2togo]

Hi oblomov and thankyou for taking the time to read / reply.
What you suggest sounds great, thankyou.

will do some googling and see if i can find anything of any use. Is there a way to contact you via PM or anything through this site, haven't been able to find it yet.

[tigger15]

I am type 1 and they told me what would happen before the birth. It all depends how low the level is when the baby comes out. I had an emergency cs, they tested ds' sugar after about 4 hours (which I think is right as everything has to stabilise after birth). Before all this he was given to me and I was encouraged to feed him. When his sugar was low they gave him formula in a cup (I wanted to b/f) then every 3-4 hours they'd test again and if still under threshold give formula until 3 tests above threshold (2.6).

This was much better than your experience but still could have been better. One assistant insisted that if I b/f then they would have to test twice (before and after)instead of just after with formula. So I b/f him w/out telling her. Then another tried to change the number of tests to 2 for all feeds. I told her I'd only agree if she got a paed to explain it to me. She stopped insisting.

The major prob of all this was that all the formula swelled ds' stomach so that he stayed up all night on the 3rd night cos I had no milk yet. Ended in a bit of a disaster but I'll know better for next time.

At no time was I separated from ds. We spent the 1st night in the recovery room and next 2 on wards always with me.

I don't know if there were any other probs with your baby. There was a lady who was diabetic opposite me whose baby was in scbu but I think he had a whole load of other probs not just low blood sugar. If the blood sugar is very low I think they have to go on a drip.

Where are you? Where's your hospital?

[1down2togo]

hi tigger thanks for replying.

There were no other probs with my ds other than stated, mainly he had a bit of hypothermia, but his temp / blood sugars were all regulated by the morning following the birth.

im in lincolnshire, im being referred to the preconception clinic so will raise my concerns there as well.

[tigger15]

Sorry I can't help or I'd recommend my hospital but it's in London. Try googling neonatal hypoglycaemia. I did it after my ds was born and found lots of info on acceptable levels of blood sugar and when to test.

[tigger15]

www.who.int/reproductive-health/docs/hypoglycaemia_newborn.htm

[gess]

hypothermia can lower blood sugars (not diabetic but that happened to ds2 and they were giving him formula on top of my bfeeding).

My SIL is diabetic (type 1) and although I don't know the details I know your experience was nothing like hers. She breastfed and her baby was not taken to SCBU at all. She was induced.

Do raise your concerns- it sounds a horrible experience.

[1down2togo]

Gess- thankyou for your reply, i've never mentioned it to anyone medical because was my first birth and i thought i was over reacting.

Will be making some notes because i get flustered soemtimes when i try to discuss these types of things.

xx

[hoxtonchick]

i have type 2 diabetes & have 2 children. i breast fed both of them. both had their sugars checked once or twice but that was it. they both got cup feeds of formula for the first day as well as colostrum. they both stayed with me at all times. i was induced too. hope you get some answers 1down, it sounds horrid.

[bojangles]

Hello, 1down..

I am a type 1 and have dd age 3 and ds age1. You sound like you had a horrible experience and nothing like the care I received.

I was very poorly with DD1 with pre eclampsia and was induced at 36 weeks, I had a massive pph after birth and was kept on HDU. DD was ok at first but blood sugar kept dropping. She was never taken away from me but that could be because I had 1:1 care on HDU - they did top up when her BM was low but they also encouraged her to feed from me too. She was aslo jaundice. She was a little baby only 5lb14 and we never really got BF off the ground after all of that.

I was expecting all this again with DS who I had emergency c section with at 37 weeks - pre eclampsia again and placenta failing. I spoke to the team before and had been hand expressing colustrum for a few weeks before he was born. I turned up to hospital with a tupperware box full of little syringes of colustrum! Well greedy DS polished the lot of in about 5 mins (completely diregarding the weeks of effort gone into collecting it!) His blood sugars still dropped but I tried to keep feeding him. he had a dusky episode though (went a bit blue and grunty) so they took him to SCIBU but I was still encouraged to go and feed him - he did have some formula but only for one night before I was mobile and I managed to BF exclusively.

So I guess I am trying to say 1. be preapred and maybe try epxressing colustrum and 2. bad experience first time doesn't necessarily mean bad 2nd time round.
Good luck.
x

[gess]

DS2 went grunty as well. SCBU was full so they put him in an incubator next to my bed and made sure the paed checked him regularly. The colostrum sounds a good idea.

I think its normal to get flustered when discussing these things. Do you have a diabetic nurse you know well you could talk it through with as well? Perhaps she woudn't be the right person....

Incidentally my experience with ds2 felt like a disaster from beginning to end and I was very jittery when pregnant with ds3. I talked to the staff about it (especially when in labour in a slightly basket case type way ) and they were all really really kind. And ds3's birth was the best of the lot.

[bojangles]

I was lucky with my hospital as they have won awards for diabetes pregnancy care and also have an award for breast feeding. My Diabetic consultant was very helpful as was the obstetrician and when pregnant with DS I spoke to her at lenght many times about DD's birth and eveyrthing that happened - I was very scared of history repeating itself. Infact can't still believe that I actively sought to get pregnant again.

I made notes before each appointment and would get quite stressed out the night before replaying the bad bits. I did feel slightly more at ease after talking it through but there will always have to be a large amout of 'wait and see waht happens' etc but it does help to be prepared.

I did find the collecting colustrum very helpful as I was hoping he wouldn't need formula. When DS drunk it all the breastfeeding advisor even spent time with me hand expressing for him in SCBU and someone came with me to help get him latched on.

What hopsital are you at? I found that being diabetic afforded me quite special care as everyone looked after me etc. However, it sounds like this might not be the case everywhere. Do you have a specialist diabetic ante natal care unit - I would see the same team each time and they were all specialists - diabetic midwife, nutritionist, diabetic consultant and obstretrian.


HTH and happy to talk more.

[1down2togo]

i saw an obstetrician, but only once because they would put me in wiht his understudy. saw my diabetic consultant, but he only was interested in my hba1c, there was no diabetic midwife, none of te midwives i saw knew anything about diabetics.

I've looked online and seen that in some places midwives have done ectra training and have got to the point where babies going to scbu has been drastically reduced.

Im thinking of putting another baby on hold for now and looking up this training. Thinking of approaching the hospital to see if something could be arranged.

[tigger15]

1down2togo try to find a hospital with a joint diabetic/obstetric clinic. That was what I had and it meant that every appointment I saw one of each at the same time and occasionally 2 consultants at the same time. There was also a diabetic midwife.
This isn't unusual in London as I called about 5 different hospitals who said they had special clinics including this.

As to the training, it might be better to ask what the hospital policy is on neonatal hypoglycaemia. Do they routinely send babies of diabetic mothers to SCBU even if there is nothing wrong with them? What happens if the sugar is low but w/out any of the other symptoms of hypoglycaemia? Will they let you have the baby next to you then? If the baby has to go on a drip do they have a HDU with beds where you can stay rather than baby on SCBU and you in maternity ward?

I don't think my treatment had anything to do with the training of the midwives as the people who did the tests on ds were usually maternity assistants/nursery nurses ie completely unqualified.

[bojangles]

I agree with Tigger and think from re reading my posts I have told you more about my ante natal care rather than post natal. I had the very specialaist care during pregnancy and labour but to be honest once I had my babies the people looking after me were not specialist diabetes trained and they just did everything according to their policies. So I guess, with DD her hypoglcaemia wasn't bad enough to take her away but that could also be bacuase I was on HDU and the midwife could give us both 1:1 care. I also just let them ff every 3 hours. With DS he was taken to SCBU because he was grunty and was a bit low - the incubator on the ward was in use so he spent the night in SCBU. I couldn't really BF that night as I couldn't get to him and had run out of expressed colustrum and couldn't express enough for him.

After I had both babies my contact with any specialist diabetic consultnant or nurse or midwife was vurtually nil. As I said they just followed policies which meant keeping me on the sliding scale drip on insulin for 24 hours after DD despite me constantly going hypo. They pretty much ignored what I was saying because it wasn't their policy.

What I guess I am trying to say is that your post natal care, like any other Mum, will depend on the team on duty at the time and they will most likely just follow their policies. So, find out what their policies are through the pre conception unit and speaking to the maternity ward, prepare yourself (e.g express colustrum and freeze) and if you are not happy about the way you are being treated then speak up.

From expreince having a second baby makes you much more aware and braver to speak up!

HTH

[hoxtonchick]

a bit off topic, but did anyone else find that being in labour meant fantastic blood sugar control? mine was 5 throughout both labours!

[Spidermama]

How strange Hoxton. I wonder why that was?

[CristinaTheAstonishing]

Perhaps due to stress?

[tigger15]

Apparently labour is euglycaemic so your blood sugar is meant to stay around the same level. However, since the policy was to put you on an insulin/glucose drip once in active labour - I've no clue.

Slight hijack - does everyone who posted want to do a summary of their treatment in hospital as a pregnant diabetic? They really vary an awful lot. For example I know that for St Mary's, Paddington 7.0 and below for HbA1cs was fine but UCH wanted 6.0 and below. A rather major difference!!!

Some criteria I'd like to know are:

1. HbA1c levels
   
2. Antenatal care: specialist midwife, joint appointments etc
   
3. Date of induction - how long they let you go
   
4. Attitude to c-sec
   
5. Policy on insulin drips in labour - when, how long, when can you have it out
   
6. Policy on CFM in labour
   
7. Treatment of low blood sugar in baby
   
8. Separation of baby from mother at any point?
   
9. State of post-natal wards and any other comments
   
   It would be very useful to know when you get a chance of chosing btwn different places.

[hoxtonchick]

doesn't stress tend to push them up? i reckon it was 'cos labour is hard work for your body.

[Spidermama]

Sorry to wander OT slightly, but Hox I'm always a bit confused about T2. Do you make your own insulin? Do you have to take tablests? Why do insulin tablets work for T2s but not T1s. I've been told insulin doesn't come in tablet form because the strong stomach acids would kill it off, and yet T2 people seem to be prescribed insulin tablets. S'cuse my ignorance.

[tigger15]

lots of stress = high blood sugar

• 
  

lots of exercise = low blood sugar

together = consistent good level?

I made that up

[Nat1H]

I have T1 diabetes, and you can't take 'insulin' tablets, You are right Spidermama, insulin is a hormone, therefore a protein, and it would be digested. I don't know what the tablets are that T2 take either, but I do know they can't really be insulin.

1down2togo, I would be very surprised if you LET this happen again. I would imagine that you would be much more on your guard 2nd time round, and more vocal!!
I have 2 children, one of whom has CP which I am convinced was caused by failure to treat low blood sugar. If I were to have another baby, I am afraid I would be breathing down their necks all the time, making sure they all did their jobs properly!

I would discuss your concerns frequently with your sepcialists - then they will know how nervous you are and try to get it right for you.

Good luck!

[bojangles]

I always understood that with T1 your body stops producing insulin so you have to inject it as can't be digested etc and with T2 your body 'forgets' how to use the insulin it is producing so the tablets act by making the insulin work.

Tigger - the summary would be useful to see how care varies - here goes for me:

Hospital - Derby City

1. HbA1c - happy with below 7
   
2. Specialist diabetes antenatal care - see diabetic and obstretric consultants and have joint appts from 34wks. Specialist diabetic midwife for antenatal care at hospital.
   
3. Aim to induce at 38 wks - never got that far myself (36 and 37 wks)
   
4. Not keen on CS - was induced at 36 wks with DD despite cervix being unfavourable and having very severe pre eclampisia - only had CS with DS as he was in distress during the monitoring whilst waiting to be induced at 37 wks again with pre eclampsia.
   
5. Sliding scale drip from time of active labour and remains for 24 hours
   
6. Monitoring during active labour with belt (is that CFM?
   
7. Baby's BM tested every 3 hours from birth- don't know the levels but top up feeds given if low - encouraged to have pre prepared expressed colustrum - took it in with me and hospital kept it in freezer - hospital very good at promoting BF
   
8. No separtion unless baby has to go to SCBU.
   
   General post natal stuff - Diabetic Mum's not allowed own room - apparently a mum had a hypo and dropped her baby - all ok but since then have this policy. Watched me like a hawk after DD, always checking mine and baby's blood sugar. After DS, with a CS, they left me pretty much to myself and let me have my own rrom - think I may have proved myself to be a responsible diabetic!
   
   Know this is a complete hijack but it is really good to hear about other diabetic's and their experiences.