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Childbirth

Share experiences and get support around labour, birth and recovery.

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Original poster

I am frightened - just been diagnosed with Obstetric Cholestasis again

45 replies

crokky · 29/02/2008 20:46

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?

OP posts:

Are your children’s vaccines up to date?

Set a reminder

rachaelsara · 29/02/2008 20:48

I've never heard of it, but I'm interested, so bumping for you!

rachaelsara · 29/02/2008 21:39

Bump

Original poster

crokky · 29/02/2008 22:13

Thanks rachaelsara . I am going to bed now, but will bump tomorrow if nobody with OC has seen thread in the mean time. I know you OC ladies are out there!

OP posts:

Frizbe · 29/02/2008 22:14

bump

rachaelsara · 29/02/2008 22:15

Will check back tomorrow, night night.

vacaloca · 29/02/2008 22:18

A friend of mine is pregnant with her third and had OC with her first, who was also delivered at 37 weeks. She's now been told that even if she had OC again, they wouldn't induce so early as there have been some studies that proved that it wasn't as dangerous as previously thought. So the same information as you've been given. Can you ask the hospital/consultant to give you that study so that you can have a read yourself? Sorry I don't really know much about the condition.

expatinscotland · 29/02/2008 22:20

I'd raise a huge rukkus with the consultant and be a giant pain in the arse. Imagine basing a baby's life on one study?

Original poster

crokky · 29/02/2008 22:23

I will definately ask for the study. I am convinced it is only in "managed" cases that there are no greater risks than in an uncomplicated pg. TBH I just can't understand how they can study the condition in late pg if they have been inducing people early - how do you actually find someone with OC who actually gets to late pg if the previous remedy is early induction?

OP posts:

vacaloca · 29/02/2008 22:23

Just found [http://www.rcog.org.uk/resources/Public/pdf/obstetric_cholestasis43.pdf this]. I hope it's useful.

vacaloca · 29/02/2008 22:24

Oops, I'll try again. link

MaryBS · 29/02/2008 22:31

I had OC 7 years ago, but I still maintain an active interest in it, and have even given a presentation and written a NCT newsletter article on it.

I would get in touch with the OC support group ASAP. I only have an email unfortunately, but Jenny is very good at getting in touch when its time critical.

jennychambersoc
at
aol
dot
com

There is also a support website, with official backing by some of the top OC professionals in the country, with the latest advice:

www.ocsupport.org.uk

and a Facebook site:

www.facebook.com/group.php?gid=5606765039

Hopefully someone there will be able to give you advice quickly.

Personally I would say "its not as dangerous as first thought" is bullshit (no offence to you vacaloca) ... don't take no for an answer, its just not worth risking your baby's life.

Original poster

crokky · 29/02/2008 22:33

Link confirms what I thought - the treated patients suffer the same risks as normal pg. They don't know about the risks for the untreated patients. I just want to make sure they treat me, rather than send me away.

OP posts:

Original poster

crokky · 29/02/2008 22:40

Thanks Mary, x posted with you, was referring to vacaloca's link.

I won't take no for an answer, I am willing to change hospitals if necessary. I just can't accept that a study (which includes my DS who was delivered at 37 weeks) can conclude anything about OC in late pg when OC patients do not generally make it to late pg!

OP posts:

meebles · 29/02/2008 22:47

I wasn't diagnosed until I was overdue, and only because I raised it with the doctor (midwife said it was my hormones initially making me itchy). I was immediately induced, and DD is perfectly healthy.

I hadn't heard about this new study - and I only gave birth 3 months ago. Given the reaction of my doctors they felt it was not inconsequential!

I'm not surprised you're worried, I hope the appointment on monday is better. I'm sorry I don''t have any firm information.

vacaloca · 29/02/2008 23:45

No offence taken - I was just quoting what my friend has been told. As I said, I'm afraid I don't know much about the condition.

MaryBS · 01/03/2008 07:03

Let us know how you get on. I had a real battle with my GP (who never really forgave me!) who told me it was very rare, and anyway I wasn't jaundiced, so was very unlikely to have it (only 20% of people are jaundiced who have it).

My consultant was a lot better, he respected the amount of effort I put in to finding out more, and even introduced me to junior house doctors telling them I knew more than they did and they should listen to me! When I obtained research papers, he asked if he could have a copy, etc etc. His name is Mr Lumb, at Peterborough Hospital, just in case that is any use...

LiegeAndLief · 01/03/2008 12:57

I had OC 18 months ago and was medicated (urso) even though I wasn't itching - I was in hospital with pre-eclampsia anyway (yes I was that lucky ) so they picked it up on my blood tests before I was symptomatic. Not sure about early delivery as I was delivered early anyway due to PE. However, when I saw my consultant post-natally he said that if I got OC again I would be medicated, but there would be no other implications - I assume that means he would not automatically deliver early.

But I would definitely expect to be monitored and medicated - can't believe the hospital midwife sent you away! I am sure your consultant will be interested. Maybe you were just unfortunate enough to meet a crappy midwife who had misunderstood the research. Agree with everyone else who has said keep banging on about it. Good luck, let us know how you get on.

LiegeAndLief · 01/03/2008 13:02

Have just read interesting link from vacaloca stating that there is no evidence to prove that use of urso is effective - so maybe I wouldn't expect to be medicated after all! Vit K info is interesting too.

MerlinsBeard · 01/03/2008 15:41

i have OC, am 37 weeks now. Was diagnsed a few weeks ago. I have a thread going in pregnancy with lots of useful info on. Am currently on Urso and Vit K and after having had my Urso upped a few times my bile acids are slowly lowering. Am still crazily itchy tho I am being monitored on CTG twice weekly and having scans every week. AM also having a liver scan on monday to rule out anything else.
Current plan is to induce next week (38 weeks)

maxbear · 01/03/2008 20:18

Crokky your consultant should and almost certainly will take you far more seriously. You have every right to kick up a fuss if this does not happen. Let us know.

MaryBS · 03/03/2008 07:36

Thinking of you today crokky and MoM... let us know how you both get on...

MerlinsBeard · 03/03/2008 09:43

how are things crokky?
Have you seen a consultant yet? or at the very least a different midwife?

I can't believe how different the treatment is in different parts of the country!

AM back in tonight for liver scan (to rile out other things even though they know its OC) and for monitoring afterwards. I am going to beg for induction before i get the cheesegraters out!

Original poster

crokky · 03/03/2008 16:45

I have seen the consultant today . Docs took things much more seriously, 3 of my liver functions are now abnormal, I am still puking and generally in a bad way so I am booked for twice weekly CTGs and have induction booked for 37 weeks. Baby is already 3/5 engaged and I am not yet 35 weeks so hopefully will want to come out at the induction! This is what happened with my DS (who was born at a different hospital) so I feel much better about it. Thanks everyone for your support and good luck with your induction mumofmonsters.

OP posts:

bundle · 03/03/2008 16:47

prufrock had this with her pgs (and afterwards ) hope she's along soon with some advice..x

MerlinsBeard · 03/03/2008 19:08

sounds similar to me crokky except that i have no date yet tonights MW was very very helpful and is doing a lot of running around to shift things and get things going.

Are you on any meds? can't remember what you said

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