MNHQ here - another NICE consultation: birth care for mothers with existing health conditions or obstetric complications

[RowanMumsnet]

Hello

Sorry for flooding the boards with NICE consultations (there's another one here about pelvic organ prolapse, complications arising from mesh surgery, and urinary incontinence in mothers, if you want to have a look!) but we've just realised this one has a tight deadline, so if you'd like to let us know any thoughts you have ASAP that would be great.

This guideline is a draft version proposing pathways for 'Intrapartum care for women with existing medical complications or obstetric complications and their babies'.

In laywoman's terms, this guidance is for 'high risk' women: those who have existing medical conditions that mean a higher risk of adverse outcomes for them or their babies, or those whose own health or baby's health has been affected by something that happened during birth.

'Existing medical conditions' covers things like heart disease, asthma, bleeding disorders, kidney disease, obesity, and use of steroid medications.

High-risk obstetric events covered include sepsis, haemorrhage, breech babies, small or large babies, post-42-week pregnancies, and previous CS.

'Intrapartum' means the period of time immediately around and following giving birth. For women with existing conditions or who have had difficult births, intrapartum care is likely to be delivered on a labour ward, postnatal ward or other in-hospital setting. So this guideline is mostly concerned with how women and babies are cared for during labour itself, and immediately afterwards.

It's a long draft guideline with lots of recommendations, so if you have personal or professional expertise or experience please take a look at the sections that interest you and let us know what you think.

As per the other NICE consultation, please note that NICE will only consider things that are within the scope of the Guideline under discussion. So the more specific you can be about things you'd like to see happen during the intrapartum period (rather than during antenatal appointments or postnatal care), the better.

And - also as per the other NICE consultation - MNHQ is a registered stakeholder in this guideline so if you'd like to share your thoughts on the proposed guidance on this thread, we'll collate the themes and use your comments to compose our organisational response. You can also submit responses as an individual, but NICE encourages people to do it via registered stakeholders wherever possible

Thanks!
MNHQ

[hungryhippie]

I a platelet condition of unknown origin. My platelets are normally in the 90s but when pregnant they drop to as low as 15.
I gave birth in St Marys in Manchester due to this and it was generally managed quite well (2 separate births)

I think the guidelines proposed for bleeding disorders are very good. Most of what is in the document, St Marys did anyway (2014 & 2016) except being offered any kind of steroids or anything to try and raise the platelet count. This would have been a positive thing to try as it could have meant that I was allowed some form of anaesthesia (I had none both times)

[Exceptionalonly]

Section 1.17 is about care of women in labour with suspected large babies and about having discussions with them risks of c section/risks of vagina delivery.
I’m pleased to see it suggests the woman should have a choice about how to progress.
But I’m confused why does this only apply to a labouring woman? Why can’t these conversations be had as part of antenatal care if there is reason to believe the baby will be large?

[GoldenWonderwall]

My experience is with large babies, multiple c sections and birth after 42 weeks. All these circumstances are stressful and it does not seem appropriate to be mentioning the risks of various interventions/ non interventions at the point where choices have become minimal - particularly where those choices directly contradict the message the nhs peddle to pregnant women about risks of things such as c sections.

It’s probably not what nice want to hear, but this resource screams out that what women need is an informed practitioner throughout their pregnancy and birth who sees them as an autonomous individual and advocates for them throughout the process.

[PloddingDaily]

Not sure if I have missed anything but I am surprised not to see pre-existing Diabetes, whether type 1 or type 2, let alone gestational included. I wonder if that was a deliberate omission?

Blood sugar control prior to and during pregnancy has massive implications for baby's and mum's outcomes and there are plenty of associated issues (faster retinopathy for example). I was fortunate enough to have an incredible Diabetic specialist Obstetrician, without whom I doubt mini ploddings 1&2 and I would have survived our experiences...

[moreginrequired]

So I have crohns and have had multiple surgeries including pan procto colectomy for this. Now (4th pregnancy ) havemanaged but active disease. My experience with my hospital (NW) has been much as described in guidelines an frankly amazing.

Planned section incorporating times so that Gastro surgery can be on hand in case required and was also visited on ward by Gastro (medical) team.

I am medical and kinda stroppy (so know what I need) which does help to make sure you get the care that you need, the only thing i would ask is who is to manage this multidisciplinary approach and in what way can we hope to acheive this particularly when it can these specialisms may not even be in the same towns or hospitals?

[Elephantgrey]

I wonder why the guidance is limited only to the medical conditions mentioned. I realise that everything can't be covered but I have Elhers Danlos Syndrome (hypermobility) and there are is no guidance on what care women with this condition should have in pregnancy and labour and what you get is very variable depending on where you live. The care I got during labour did not take my needs into account and I have been left with lasting birth injuries.

I would like the guidelines to at least consider that women with a physical disability should have the opportunity to discuss which mode of birth is most suitable for them and what support they will need. They should be given the option to have a ceasarian if this would be the best option for them. NICE guidelines say all women can have a ceasarian but women who have a physical disability oftten feel pressure into a vaginal delivery which may not be the best option for them.

[OpenThatTrapDoor]

Another one surprised and interested why type 1 diabetes isn’t within the conditions listed.

[deplorabelle]

I was high risk because of previous stillbirth. This doesn't seem to be covered in the guidelines either (does guidance exist elsewhere?)

Two things I think are important for women with high risk pregnancies and particularly those who have lost a baby

1. increased need for privacy and for a partner to be able to stay with the labouring woman. I had to get a private room in order to have my partner with me while being induced. CLUs often seem to have poorer facilities than MLUs (e.g. Lack of ensuite. It was horrible to have to go out into the corridor of delivery suite to the loo and shower after delivering my stillborn baby. I had to be in CLU because of induction)
   
   Ante natal notes are marked (in my area at least) with a butterfly sticker to encourage tact in hcps dealing with a subsequent pregnancy. People didn't always notice the butterfly and not ask stupid questions about baby no 1 but they mostly did. However there was no butterfly sticker on postnatal notes so I had to explain to about nine separate people that yes I had had a baby before but no I didn't breastfeed because she wasn't alive (and similar conversations)

[Makeitchange]

Agree that decisions/considerations about how baby is going to come out should be made MUCH earlier than when you're in labour. Of course you may change your mind at 39 week + but you shouldn't be weighing your options at the last minute. Truly informed consent can't happen without prior discussions.

On 2 occasions (1.3.16 and 1.7.7), it is stated that the benefits and risks of caesarean section should be explained. Benefits and risks of assisted second stage ought to be explained in full as well. BOTH caesarean and instruments carry benefits and risks. These should be made clear.

Personally I question the veracity of this statement at 1.19.3
"Advise women in labour who have had a previous caesarean section that there is little evidence of a difference in outcomes for the baby between a vaginal birth or another caesarean section."
There are different categories of c-sections for a reason. Some are more urgent than others. Some are more traumatic (here I mean physically) than others. If preterm births and full term births have been put together, maybe there isn't much difference but I doubt it's the same when you look at full term births only.

Otherwise I've never understood low risk/high risk. Things change all the time. You should be cared for as an individual and your care should change according to your needs.

[wonkylegs]

I was high risk as I have RA and so the long term steroid treatment detailed in the guidelines applied to me. To be fair the guidelines pretty much followed what happened in both my pregnancies with regards to the steroids.

I would say that I generally had a fab multi-disciplinary team looking after me BUT that's partly because I know my condition & medications well as I've had RA since I was a teenager. I knew to ask about certain things and for particular staff and also to challenge things that were incorrect.
I am not sure this would be the same for someone new to the condition or less confident. I would say the majority of the inconsistencies and errors were by the midwifery team who although lovely often overstepped their knowledge or at least didn't handover when they should have.

[April2020mom]

My son was diagnosed with Spina Bifida before birth. When I gave birth I was high risk. I had a whole team watching me in the delivery room constantly as well.
After birth I got to hold and see my son for a minute before he was whisked off to Children’s Hospital with my partner following close behind. He kept me updated on my son’s progress via text messages and pictures.
I asked a lot of questions of the nurses and doctors. My partner brought me to see my son in the hospital by a wheelchair loaned to us by the hospital. The guidelines need to have information on Spina Bifida and what sort of things should be considered in the event of a diagnosis as well.
Because that is what my whole experience is about. I hope that I will get to have a chance to tell my story and share some valuable pieces of advice too. Glad to have a opportunity to contribute to this resource however.
Resources for high risk pregnancies are surprisingly hard to find. I searched high and low for information and support when I was pregnant with the twins and failed to find much. I wish this sort of guidance was available when I needed it the most two years ago.

[RowanMumsnet]

Thank you for all your thoughts. We've submitted our stakeholder response based on your comments on this thread and we'll keep you updated with what happens next.