I am frightened - just been diagnosed with Obstetric Cholestasis again

[crokky]

I had my DS at 37 weeks because I had obstetric cholestasis and was told this could increase the risk of him being stillborn if I went nearer to term. I am pg again (34 wks) and got a phone call from the midwife to say that the cholestasis has come back. I knew it had a high chance of coming back and I thought I could deal with it mentally because the condition would be managed to protect my baby.

The community midwife wanted to send me to the hospital immediately for an assessment with a view to getting medication, but the hospital midwife refused to assess me because she considered the condition fairly inconsequential. The community midwife was not happy about this so she took more blood herself and I drove it to the hospital labs myself (missed the community transport deadline). The hospital midwife said that recent studies had shown the rate of stillbirth to mothers with OC is not different to the overall rate of stillbirth. This was based on studies on babies born in 2006, BUT...my DS was one of these babies and I was on medication, having regular CTGs and delivered 3 weeks early. So how can that show that the condition doesn't give problems when probably the vast majority of OC mothers in the study were medicated and delivered early ie MANAGED not DISMISSED??? I am so angry that the hospital dismissed me today when I was terrified.

Coincidentally, I do have a consultant appointment on Monday (am under the consultant due to this complication and also previous complications). I am afraid the doctors won't care either. I don't know what to do. I am frightened. I don't know what to say to them to make them look after my baby! Has anyone had OC in the last few months? Did you deliver early or were you told the condition was not a problem anymore, compared to a couple of years ago?

some advice from prufrock here

hello

I am frightened too. Am 28 weeks preg (second time round) tomorrow.

Last time, OC started at bang on 28 weeks. So now I'm just.....waiting.

I thought I could handle the idea of getting OC again, but now I'm terrified. Both of the possibility of something happening to the baby, and of the reality of a second induction.

Before getting preg I went to see one of the top UK OC specialists (at Queen Charlotte's). He said that, as long as the urso was working to bring down my LFTs, they would consider just monitoring and letting me go to term. But I just don't know if I could face the chance that something bad could happen. Am too scared. Plus, I'm not actually at QC for my ante-natal care. Am at King's and I'm pretty sure they have a blanket policy of early induction.

Apologies for rambling and good to hear that you were taken more seriously by the consultant. You should complain about the midwife you saw who didn't take it seriously.

I found the antenatal care I got was fantastic, and that because I had OC they REALLY looked after me. More so I felt, than if I'd a normal pregnancy.

If you are worried about going "to term", tell them so. I still don't feel they know enough to say whether it safe.

Second time for me was a lot smoother, the induction worked using gel, whereas with the first, they tried everything to get me going and it just wasn't happening!

MOM - I think it would be a good idea for them to give you a firm date that you are going to be admitted to hospital for induction. The procedure to book an induction is very simple (at least it is at my hospital!) - I watched the lady book mine - it was a single phone call, they just need your name, hospital number, your condition and your consultant and it is a simple as putting your name in a book on the specified day. When I saw the doc yesterday, I was asked, did I want to get a date booked immediately and I said yes. I think it is helpful because you know what is going to happen then and also you have something to aim at. Am on Vit K only, my doc does not believe URSO helps the baby, just the mother (I think this is part of the problem - there is no proper research and the doctors are just all working blind and have differing opinions etc).

pregnabrain - Mary is right, if you don't feel happy going to term, tell them. It is quite shocking the differing treatments that the hospitals give - eg my current hospital doesn't want to do any more blood tests, they just want to induce at 37 weeks. They say further blood tests are needless because the diagnosis has been made and the absolute levels of each LFT/bile acid do not correlate to the health of the baby. Nobody has any way of knowing what's correct. My previous pg at another hospital, they did blood tests all the time, 3 times a week and induced me at 37+0. It's really difficult to know what to do. The reason I am happy to be induced at 37 weeks this time is purely because that is what happened last time for me so I am hoping I can deal with it again.

hello crokky

King's has the same policy as your current hospital, I think. They don't do that many blood tests because they say it makes no difference to the outcome ie. early induction. they let me go to 38 weeks last time, with monitoring every couple of days.

The reason I'm in a pickle about it all is because induction was so horrible for me last time. But, at the same time, I can't bear the thought of risking the baby in any way. It's a bit of a frying pan and fire thing.

Am by your consultant's view of urso. What is wrong with just helping the mother??? The urso gave me my sanity back last time. It's not going to help your newborn baby if you go into that testing time having endured weeks of stress / itching / no sleep. I'd kick up a stink, if I were you.

By the way, I meant to ask...

Did they test your LFTs as a matter of course because you had OC last time? Or did they do it at 34 weeks because you went to them with itching symptoms?

My midwife says not to bother getting blood tests done unless I start itching, but I suspect that it's possible to have OC without itching a lot. Not sure I should follow her advice.

It's definitely possible to have OC without itching, but usually itching is what makes them do the test. Since the recurrence rate is so high, they should be doing LFTs routinely for someone with a history of OC.

They gave me the LFT last time because I went to see the midwife with scratches on my arms . I think the second induction may be much easier - I have not yet been examined, but they say lots of 2nd time mums can have their waters broken without the need for the prostin pessary. Also, with my induction last time, I had forceps as well and she said since the body has done it before, I might be able to get away without the forceps this time.

Pregnabrain, it is definitely possible to have OC without itching - I had it with no itching at all, as I said further up the thread. I would push your midwife to take blood.

sorry, only just remembered this thread!

had sweep today and will be induced on friday (38+2/3).

they were happy just to let me go to dates but no further until i said i had done my own research and was worried about the effects on baby after 38 weeks. mentioned your hospital crokky (although i don't know which one obviously!) and how they were inducing you as a matter of course and she was happy to go with it esp as my bile levels are on the rise again

Right. Am going to insist on LFTs. If I'm going to have to be induced, I'd rather have a while to get my head round it, and I don't want the OC to go undiagnosed if I do have it.

Good luck on Friday, mumofmonsters. Will be thinking of you.

My induction first time, was vaginal sweep, 2 lots of pessaries, breaking the waters, before putting me on the drip. Lots of pushing, possible emergencycaesarean, etc before giving birth vaginally

My 'induction' second time was 1 pessary, followed by relatively quick labour, one push and he was out. I upset my midwife because I wasn't supposed to be so quick, plus the head midwife as she had to deliver, and she didn't 'do' deliveries

Definitely push for blood tests, its the only way to be sure. You can't rely on the itching!

Oh Mary

I hope I have as happy an experience as yours. My first time sounds incredibly similar (if you add permanent pelvic floor damage to the list ).

Can I ask if you managed the drip without an epidural? I was too scared to try it but want to avoid epi this time.

god, so sorry. i've just realised that my posts re induction are probably the last thing anyone who's about to have one wants to hear.

sorry sorry sorry

Me too

(no, I was told take the epidural, so I did)

Hi, been a while since anyone posted on this thread but I'd love some advice. I mentioned mild itching on my hands to my midwife at 34wks so they did LFT and Bile Acid tests which came back raised. Since then I've had two more blood tests and all except AST are back to normal and that's dropped a lot. I'm now 36 wks and they're talking about inducing me at/around 37wks. However I feel so well, itching has basically stopped and was never severe and a part of me feels that if I hadn't mentioned it they wouldn't know anything was wrong, my pregnancy has been so easy in every other way and baby is very lively. I'm very nervous about early induction and worried about a traumatic experience for me and the baby when everything might be OK. I just wondered if anyone else had resisted hospital pressure to induce them early and what happened. Or any early induction experiences! I keep finding induction threads but it must be a very different experience at 41 weeks to at 37 weeks. I know that if I do have OC (and I'm not convinced) there is a risk of stillbirth but it doesn't seem to be higher than in the population as a whole and if my symptoms are so mild it seems silly to induce labour early... Sorry for long message but it's a real dilemma....

Mayx3, am in a similar situation. Am on Urso & vit K having had bile acids up to over 200 at 34wks. Am now feeling great, no itching & bile acids/LFTs within normal range.

Having had a c/section for DD 13 months ago I'm desparate to resist induction, which is unlikely to be possible or successful. Do I dare carry on the pregnancy(the hospital are monitoring me 2x wkly & are happy to carry on...) and accept the risks? As was said at the beginning of this post, no one knows about the risks in late pg because everyone is induced at 37/38wks. If one is controlled well by meds, and feeling good, is it completely irresponsible to continue the pregnancy? Aaaah!

hello hobie

sorry to hear you've been diagnosed with OC, but fantastic that your LFTs / bile acids are now back to normal.

I don't know if you saw further up this thread, but I went to see the OC specialists at Queen Charlotte's before falling pregnant this time. They said that, as long as my symptoms were manageable ie itching not strong, and my LFTs / bile acids came back down to normal or only slightly raised with the urso, they'd consider letting me go to term rather than opt for early induction.

I don't know if this helps you or not. Might be worth getting in touch with them if you can. Certainly contact Jenny Chambers at OC support as she is wonderfully helpful and also works with the team at Queen Charlotte's. If anyone knows about OC, it's them.

Best of luck to you. It's a horribly difficult position to be in.

Thanks pregnabrain,

Saw the consultant today and after a long discussion with him we've wimped out and decided to go for elective c section on Friday. On reflection neither he nor we were happy to wait and watch, and induction so soon after a section (13months) is also a bit dodgy. I'm happy to have made a decision, but a bit disappointed. In all likelihood any labour I would have experienced would have been really closely monitored, and may well have ended in an emergency section which would have been pretty unpleasant.

The trouble is we're at a district general hospital with limited resources. A large teaching hospital may relish a challenge, but here the wards are usually full and frantic. So much for patient centered care - I'm glad I'm not a doctor working in the NHS!

Ho hum, I suppose some of life's challenges aren't to be met by everyone. Life with 2 under 14 months will be enough to keep my hands full!

Hi hobie1, good luck with the elective c section tomorrow. I know the feelings of helplessness with OC - it is such a little known condition it's really frustrating.

It sounds as if your blood results were a bit more clear cut than mine. My blood results dropped back to normal quite quickly and were never that high (highest bile acid level was 21), so we decided to wait and see and had lots of monitoring, blood tests etc, but all seems to be fine now (my EDD is 10th so hoping baby will show up soon!). Managed to have a pre-eclamsia scare too, but seems blood pressure is back to normal now too. Baby kicks like mad all the time which is very reassuring. Jenny Chambers was very helpful and having read round the condition and how I felt (absolutely fine and no itching) decided to leave the baby where it was. The hospital (Homerton in London) have been great, most of the doctors/midwives very helpful and happy to let us make the decision - so could have been induced if I'd wanted to... I'm now anticipating being induced for being late which is a bit ironic really.... (though still plenty of time - just being pessamistic!)

Good luck again!