Raised bile acids. C-section supposed to be moved forward to 38wks, still no date! Unsure who to contact

[Sonny124]

Hi all,
im 37weeks and have been recently diagnosed with obstetric cholestasis.

my consultant has said my section needs moving forward from 40weeks to 37 or 38 dependant on my latest blood results.

this was last week. My blood results are back but still no one has contacted me and my section date hasn’t moved.

im panicking a little as I turn 38weeks this week coming.

I rang Friday. Got through to loads of departments but no one took time to actually talk to me. Eventually I got through to a midwife who just said my blood results were there to see on badge notes (like I understand them?) and that they’ll be in touch when the dr has had time to review them!

my last pregnancy my daughter poo’d in me, which is one of the risks of obstetric cholestatis and I don’t want to go through all this trauma again.

I feel like I’ve had such a good experience this pregnancy and now Im being completely fobbed off !
does anyone have any idea who i can contact about this ? I don’t have a named midwife and the antenatal line doesn’t even work! I made the receptionist go find a midwife in the end.

I’m more bothered about getting a section date so it doesn’t end up being an emergency again. But my 40wk date is still there.

my bloods show I still have raised bile acids and ALT.

Sorry I don’t have much good advice but can you paste your results into chat GPT and get it to tell you what they mean

Hello.

I've been there - hope you don't have "the dreaded itch" too bad.

This fantastic small charity can help advise on key things you need to ask about, and understanding your bile acid results.

www.icpsupport.org

They also have a great Facebook page.

The lack of urgency suggests that your bile acid results are still in line with mild and moderate ICP, where the latest guidance is to leave babies til 38 weeks, or possibly even longer.

Keep chasing your hospital, though! You must be getting very regular blood tests for waiting to be in line with the risks.

Thankyou. Yes I’ve had blood tests at every single appointment as it’s only recently been picked up on.
I'm just so close to the end now and don’t want to put my baby in any danger.

I had no idea there was a reason for the itching. I just casually mentioned it when having a midwife appt due to a large baby. I will take a look at the above website, thankyou.

I’m 38 weeks this week so I could do with them sorting out their plan for me 😕

Have you tried Triage at your maternity unit?

Ring the consultant secretary in the morning and ask for advice/help. Explain you were advised it needed to come forward based on bloods but unsure what is happening next.

It was an appt sec who arranged my date. Midwives have nothing to do with it so unlikely to be able to help.

There’s literally no contact numbers for the consultants. I did not know there was secretary?
it was antenatal I rang last time who were not so helpful.

I'm debating just going the hospital in person tomorrow

No? I didn’t know if they could deal with this? This is what I mean, I have no idea where to turn to 😣

Just to update.
rang triage today who told me my usual consultant hasn’t been in and that the consultant in ANC would rather I discuss with my usual dr.
she says my notes do state that I should have my section moved earlier and that they should be in touch in due course (I don’t know whether this has actually been referred as my consultant hasn’t been in to do it).

a few hours later ultrasound rang me saying they want me to come in on Thursday for a scan on my liver. They couldn’t give me any further info other than it had been requested.

so I’ll assume nothing is happening before Thursday & hopefully in the mean time my usual consultant will get in touch 🤞🏻🤞🏻 I turn 38weeks on Thursday 😬

Switchboard at the hospital is your friend here - just ask them to put you through to the secretary for obstetrics/x consultant.

The liver scan is usual practise for ICP patients - they do it to confirm that your bloodtests are definitely not caused by any other liver issue / disease.

It does sound like they are working through the usual steps but... do you know what you bile acid results are? If <40 then what is happening makes sense, but much higher and your baby is at risk... as I'm sure you know. I'm sorry you're getting such poor care!

my bile acids are bang on 40 🙈 and my alt is 273

Oh no :s Hopefully you've now heard from your consultant tomorrow. I do think the hospitals struggle when you're a bit "on the threshold" - I hit 44 once, but dropped right back down, and no-one seemed to know if that meant things were now okay or now!

I hope the little one is wiggling away in there reassuringly. Fortunately my one took matters into her own hands and turned up at 36 weeks, saving me too many weeks of anxiety.

Midwife here - with obstetric cholestasis at 38 weeks, the normal practice would be to ‘watch and wait’ with blood tests every 4 days or so. If they can get you to 39 weeks without the picture getting worse then this will be the plan. It’s a bit of a toss up between the disadvantages of being ‘early term’ and the obstetric cholestasis.

The doctor or a midwife should be reviewing obstetric cholestasis bloods within 48 hours and making a plan. This plan may not be a section date but should be along the lines of ‘borderline for now but come in to repeat on x date’

I doubt you will be able to get in touch directly with the consultant and either way this is under the day to day management of the registrar and the delivery suite matron. Do you have a 24 hour Obstetric Assessment Unit: Labour ward triage? You should do. Present there tomorrow morning and ask for a plan.

Feel free to PM me

@EastEndQueen
I was induced at 37+2 - cholestasis identified on Friday, sweep on Monday, baby born on Tuesday. Would that have been because of my bile salts numbers? I don't recall the actual number but I think it was around 160 odd and I remember it rose after they started me on whatever pills it is they give you to try to stop it getting worse.

I would have been really anxious in your shoes, OP, but I wonder if there is less urgency as the bloods are less dreadful?

Thankyou , you have given me a lot more information. I still haven’t heard anything from them. This is my double rainbow baby so I’m so anxious. I also have anti-phospholipid syndrome and baby is measuring 97th percentile (although glucose tests show I’m just meeting borderline for diabetes).
my worry is not only do I have no idea what is happening. But that what if my bile acids raise in the meantime? My daughter poo’d in me and I had an emergency section with her due to her heart rate and I’ve read that this can be caused by OC I’m wondering whether I had it back then but it just wasn’t picked up on (I had her during Covid). I’m really struggling now mentally with worry.

This has now been going on since Thursday 😔I don’t know why no one else will/can just deal with me.

They do have maternity triage. I have debated just turning up.

Possibly. But I still feel someone should have rang me, as promised, and explained my plan of care going forward 😔
I’m glad my number has gone down, but I’m terrified it is going to go up again. seems odd to just ‘leave me’ with no further tests/explanations.

I’m sorry you had to go through that. Although im really glad they got your baby out safely before it got worse.

I’m glad it was helpful OP. Definitely turn up at triage in person. It doesn’t sound like immediate delivery is indicated but a robust plan with someone having oversight of it definitely is and sitting in front of the registrar who is on today will be the best way of achieving that