Cholestasis - can anyone answer my questions??

[kookiegoddess]

Lots to ask here, sorry it's long. I'm 34+5 wks, I've had itching and test 3 days ago showed ALTs at 363. Am awaiting results of further tests to rule out any other liver function problems and have a liver scan on monday.

I had been planning a Homebirth and it now looks like I may be induced at 37 weeks (doc has said it's "likely" in my notes).

Induction is obviously the very opposite of what I'd been hoping for so does anyone have advice on how to cope with induction, anything natural I can do to help myself, what to ask for in hospital so that I can maximise natural movement and birthing positions (re: monitoring etc). I'm quite anxious about being forced to have drugs I don't want and/or being rushed into taking them if I'm not clear about what's going on.
Also what to put in a birthplan for induction??

Also, at what point did your docs decide that you needed to be induced? If they don't induce me, would I be able to have a HB and proceed as normal or does the possiblity of Cholestasis rule me out for HB?

Also, Bilirubin level is 10, what does this mean?

Did you make any changes to yr diet re: low fat, low saturated fat? I drink A LOT of milk and don't think I'd manage to cut that out really. Do diet changes impact yr levels? I've just read something which makes it seem that it doesn't really help but that's the danger of googling...

Did any of you decide to let yr baby go to full term given the outcomes of studies of Cholestasis are unclear re: stillbirth? How did it go for you?

Also is it worth getting a 2nd opinion? I'm london based, my hospital is St George's. I'd be happy to pay/travel to get an opinion from an expert if it's worth it.

I'd really appreciate any advice you might have. Just any help with getting my head around the swing from HB to induction would be a start!

TIA from anxious kookie.

[3andnomore]

no experience, but sorry you have this and that it has messed up your Birthplans....
well, no help, I know...but your message will be bumped up, and someone might come along and be able to tell you more

[cityangel]

kookie I didn't have cholestasis, but I can really sympathise with the itching as I had PEP which has the additional rash symptom:

www.bad.org.uk/public/leaflets/PEP_PIL.pdf

I hope you you get some advice/ answers to your questions

[fadingfast]

Hi Kookie. I had OC in both my pregnancies and the really difficult thing to deal with is that no one seems to know what causes it, or even how best to treat it. A good site to look at is www.ocsupport.org.uk/.

Your ALTs should be below 50 (mine got to over 500!) and I think the bilirubin might be your bile acid reading, which should be no more that 12 (I think) - or perhaps bile acids might be the results you are still waiting for? This is what normally confirms a diagnosis of OC, rather than your ALTs.

I was induced both times at 37+ weeks. First time the induction took a lot longer to get going and I had more interventions - I was put on a drip to speed things along and so ended up opting for an epidural. I was asked about a birth plan and to be honest my only aim was to avoid a C-section (which thankfully I did). I was monitored pretty regularly throughout. Second time around, it was a lot easier - 12 hours from start to finish compared to 24 hours the first time and no epdiural.

Both times I was put on medication as soon as the diagnosis was confirmed (ursode-something acid), which improved my blood results after about a week. I also had to take vit k tablets as the condition affects blood clotting abilities. I was monitored regularly for the rest of my pregnancies.

First time around (nearly 4 years ago), the hospital protocol was for OC mums to deliver before 38 weeks, earlier if your blood results were bad. This time around (5 months ago), different doctors at the same hosptital seemed to have different attitudes to the condition. I was hauled in to hospital at 36 weeks and told I would probably have to be induced the next day , only to be told by a doctor the next morning that it was up to me and I could wait a bit longer if I wanted to. Apparently, latest research suggests that the risk of stillbirth in late pregancy is no greater in those with OC than any other mums, and so there is less urgency to induce. However, this is only the latest research and still no one could tell us with any certainty so we decided not to take the risk and I delivered at 37+6. As I understand it, all the previous research suggests there IS a risk in the last couple of weeks and given the different opinions of doctors in the same hospital I just didn't want to wait any longer. Having said that, I got the impression that they would have let me go to 40 weeks had I insisted on it - it was very much left to me to decide.

Personally, I wouldn't have wanted to have a home birth and I doubt they will be happy about letting you do this if you do have OC but I can't really comment on this as I have no experience of it.

Sorry if this is a bit long and rambling (it's getting late) but if I can help with anything more please let me know. First time around it was all a bit scary but all turned out fine and I now have two very healthy children so do try not to be too concerned.

[Aubergenie]

Thanks for posting your experience, fadingfast. I'm following this thread too as I've got raised ALT levels and am being regularly monitored wit suspected OC. I'm going for my bile acid results today (last week's results were OK, so they don't understand what is going on). My understanding is that the risk of stillbirth in OC sufferers who deliver after 38 weeks is no higher because hospitals have a policy of delivering between 37 and 38 weeks. They don't know what would happen if they let you go to term. This is simply what I've learned from the internet. Do you know any more about this from your discussions with doctors?

[MaryBS]

Very quickly, as I have to get ready for work, but I suggest you contact Jenny Chambers at the OC support group. She can be emailed on jennychambers oc at aol dot com (no spaces, replace at by @, dot by .).

I had OC in both my pregnancies, and was induced both times at 37 weeks and 36 (second one earlier due to lack of movement).

[kookiegoddess]

thanks fadingfast. Good to hear yr thoughts, I'll see docs on Thurs so will be ready with questions about any recent findings on going to term etc.

Mary, i've emailed Jenny too, she's currently away till 4th but hope she can offer some advice.

Will post again if/when I hear anything.

Tiny bonus, I got to see my baby at my liver scan today, looking just as active as it feels

[Aubergenie]

Good luck on Thursday Kookie! Let us know how you get on. My hospital is still waiting for bile acid results to establish what is going on with me. If cholestasis is confirmed in my case I'll contact Jenny Chambers for more info.

[fadingfast]

You might also want to look on the Royal College of Obs and Gs website for some more info for patients, including the latest thinking on early induction (not that it helps a great deal). There is also this guideline which is a bit medical but might answer some more of your questions: www.rcog.org.uk/resources/Public/pdf/obstetric_cholestasis43.pdf

[mylittlepudding]

Most obstetricians will have seen babies die from obstetric cholestasis. If your ALt is raised like that with normal bile acids, an alternative diagnosis is acute fatty liver of pregnancy, or rarely an unusual HELLP syndrome. Ask all the questions you can. I know birth experience is very important - but early induction is not taken lightly. An open mind, and all the positions and natural painrelief you will have been reading about anyway, will stand you in good stead. I hope your baby does ok and you make it to 37 weeks!!!

[mylittlepudding]

That cam out harsh. I meant, although there is an absence of big studies, anecdotal evidence often guides obstetricians - and stillbirth is a big motivator.

[Aubergenie]

I've been wondering how you got on today Kookiegoddess. Did you manage to get your questions answered?

[AnybodyHomeMcFly]

Hello Kookie
I had OC in my first pregnancy. It was first suspected at about 35 weeks and they did blood tests which were inconclusive. Although I wasn't planning a home birth, I was planning a "natural as possible" birth in the midwife-led birthing centre rather than the normal delivery ward.

However, the consultant decided that as my LFT levels were abnormal (albeit not sky high) then I should have an induction at 37 weeks. I was v upset about this and frankly I felt in shock. I knew my baby wasn't ready to come out and, like you, I did a lot of reading online from which I gleaned that it wasn't proven that OC causes stillbirth.

I still didn't have a full diagnosis at this point either - they thought it could possibly be pre eclampsia - so although I did have induction pessaries throughout week 37-38 I held out against going on the drip or having ARM. The prostin finally worked at 38+2 weeks and DS was born, quickly and with an epidural which was a godsend for me.

This is all a v long preamble to my main points which are:

a) I know just how you feel but
b) the safety of your baby (and you) is paramount. I am now preggers again and likely to develop OC again I will def not "fight" induction this time.
c) induction brings on labour much more quickly (or tends to) so you should not feel that you have "copped out" or let yourself down by having more pain relief than you initially planned. I can't tell you how glad I was of epidural as it meant I could think straight instead of being in fog of pain - and actually made me feel more in control. Of course it is a personal choice and may not be right for you but it did help me.

I wish you the very best of luck in the rest of your pregnancy and birth - do let us know how you get on.