I’m not saying my first pregnancy was a breeze but I was pretty lucky. No morning sickness, not many aches and pains and a neat little bump. However, that all changed at 35 weeks. If you read my labour story you will know that Molly ended up being born slightly earlier than planned due to a health complication called Obstetric Cholestasis.
One Sunday I was overcome with an intense itching sensation but no rash. By the Monday I was in agony and sat at my desk at work looking like a woman possessed. It dawned on me that I hadn’t felt the baby move for a while but I couldn’t really think when it last was.
Luckily my friend is an Obstetric consultant (which is always handy when pregnant) and so I gave her a quick call. Straight away she asked me if my hands and feet were itchy to which the answer was ‘no’. She said that was good as if they were it could be a rare liver condition called Obstetric Cholestasis (OC or ICP). She told me to pop to the hospital anyway to have baby’s movements monitored and to ask them to do my bloods for Obstetric Cholestasis just as a precaution. I was a little dubious about telling a midwife what to do but off I went.
I spent some time at the hospital on the monitor and all was fine with the baby. After a bit of persuading they took a blood test and said they would call the next day with the results.
I got home at 5:30pm. At 5:45pm the midwife called me and asked me to come in first thing the next morning as my bile acids were sky high and it was confirmed that I had Obstetric Cholestasis. I have to say Edd and I were quite calm as didn’t really understand the condition. Cue a night of googling and calls to my friend who explained that Obstetric Cholestasis is where your liver releases bile acids in to the blood. This is very dangerous for the baby and can be linked to stillbirth. Not really something you want to hear when 35 weeks pregnant.
The next morning I had more bloods taken, measurements of baby, ultrasound scans plus copious other tests. It was only when the midwife told me she thought the baby was breech and small as well that I had a good cry. She wasn’t luckily. I think it was just too much to take in. I hadn’t even packed my hospital bag yet. That was the first thing they told me to do.
I was referred straight away to a consultant and was required to have blood tests every other day. The first consultant I saw refused to treat me as he didn’t feel he knew enough about the condition. Instead of spending my last few weeks finishing off at work and getting ready for baby I spent most of it in the hospital being treated like a pin cushion.
I became very au fait with my LFTs (liver function tests) and bile acid levels but all I really wanted was for them to get the baby out so I knew she was safe. The doctors wanted to get me as close to 40 weeks as possible and all the time the only thing I could do was monitor baby’s movements and if I didn’t feel her move I had to go straight to hospital. How long is too long between movements? Two hours, an hour, 10 minutes? I think Edd was more panicked than me as he couldn’t do much. Luckily we only ever had one middle of the night dash to the hospital.
As well as dealing with this I was having to cope with the intense itching that had overtaken me. No cream seemed to help and I spent many a night lying on the cool bathroom tiles trying not scratch myself red raw.
Other than the itching there weren’t many other symptoms. Tiredness, lack of appetite and some nausea.
I hadn’t even seen the second consultant yet but we were contemplating a private c-section as couldn’t stand the constant worry. On the Friday I had my bloods done as usual and that night I was in agony. I couldn’t sleep as the itching was so intense. The next morning Edd was adamant that my levels must have risen as I hadn’t been this bad before and urged me to call the hospital. They went off to find the results and as I was waiting for the call back Edd decided we needed to get in the car and go to hospital anyway. Good job, as we were halfway there when they called back and asked me to come in urgently as they needed to induce me straight away.
After a day spent in hospital I was sent home as the labour ward was full. I didn’t sleep a wink as I couldn’t stop scratching, I knew my baby was in danger and I had to deal with the fact that in a few hours I was giving birth. Lets just say I was exhausted when the time for labour came round.
I don’t know why I developed Obstetric Cholestasis as I was not classed as the at risk category. We have no family history of it and I can only think it was linked to a liver problem I had when I was 18 as a result of contracting glandular fever. I had told the midwife about this but it apparently wasn’t marked on my notes. Whatever the reason I actually consider myself quite lucky as some people get it very early on in pregnancy and their stories are not always as positive as mine. I only had a couple of weeks of worrying and for that I’m thankful. The moment I gave birth the itching stopped and most importantly my baby was safe.
When I became pregnant for the second time I knew that there was a very high chance I would get OC again. I was monitored throughout and under consultant led care. Despite the odds when I had Alice at 37 weeks I had so far not developed the condition.
Although there was an apparent lack of knowledge from my consultant I have to say I never felt that they weren’t doing their best. I would rather he admitted he didn’t know the condition, it is rare after all. It’s also a difficult balancing act between having a premature baby and trying to get baby as strong as possible and when it got to dangerous levels they did act quickly.
I know from previous comments that quite a few of your have experienced OC so please do share your experiences below.
I can completely relate to your story. I developed OC at 33 weeks in my first pregnancy and it was unbearable! I used to scratch my arms and legs with a small hairbrush it was so bad, but the worst was one night when my tongue started itching and there was nothing I could do to relieve it. Itching is such a weird thing – I never knew whether it was 100% related to the OC or if the thought of itching was making me itch! The poor student doctor in one of my appointments got a pretty sharp look from the consultant when he was stood there scratching listening to me talk about it and even now I am itching slightly as I type! I was lucky – everything was fine with my now 18 month old baby boy but I was induced at 37 weeks after a few midnight dashes to the hospital to be monitored. It’s great to hear that you didn’t develop it in your 2nd pregnancy – fingers crossed I’m as lucky! Thanks for this piece – I agree that no one I spoke to had much experience of OC and I don’t know anyone else who had it so ended up reading lots of scary stuff on the web – it’s good to get a real-life perspective on it!
Why didn’t I think of a hairbrush Carla. Genius!! So glad your little boy arrived safely too. I agree that when you try and read up about it it is all incredibly scary and there are a lot of harrowing stories which don’t fill you with much confidence. I was actually worse with my second pregnancy as I knew what the condition was and so was much more worried about getting it again early on. As I said I hadn’t by 37 weeks but got induced just in case it was to develop again in those last few weeks. I also found my consultant so much better the 2nd time round. She knew lots of the condition and was very adamant that should I develop it they would act quickly to get baby out as soon as they could. She seemed to know the risks so much more. Fingers crossed tat you don’t have to experience it again (especially the itchy tongue!) x
Like you both I had a straightforward pregnancy until I developed OC at around 33 weeks. I’ve got a very similar story in that I felt slightly itchy and wasn’t sure about the baby’s movements and I was already in the hospital meeting an anaesthetist to discuss drugs during labour because of previous health problems so I popped to the maternity unit for a chat. The nurse monitored the baby and took some blood and said she would call me that night if it was anything but it was unlikely. 30 minutes later she was on the phone asking me to go in first thing and telling me not to Google which is or course what I spent the whole night doing! It was an exhausting few weeks of bloods and monitoring and consultant appts before I was induced at 37 weeks. I joined an ICP support group on Facebook and that really helped with hearing other stories although not all ended well. I haven’t decided on another baby mainly because I don’t want to get OC again and worry about taking my son to hospital every two days for appts so I’m glad to hear you didn’t get it again. I’m still having liver problems 9 months after Stanley was born and they don’t know why so it’s a condition that definitely needs more awareness. Thanks for sharing.
Oh you poor thing still feeling rubbish. I was lucky in that my LFTs etc were back to normal two weeks after birth. I love that the nurse told you not to Google it. I wish I hadn’t. The nurses just said, it can be linked to stillbirth but we don’t think it’s any higher than normal pregnancy!! I’m not sure if they didn’t know or if they just didn’t want to worry me. Although the chances are really high you’ll get it in a second pregnancy I defied the odds so it can happen. Molly did get dragged to the doctors with em lots but she was really good. There may have been a lot of chocolate buttons involved. I actually had my bloods done less frequently. I think it was once a month to see the consultant and every 2-3 weeks for bloods which they normally combined with other appts so wasn’t as bad as it could have been. I hope you start to feel better soon xx
I should say what I learned from the support group is that there is such a lack of knowledge around OC simply because no woman is willing to risk going full term just so they can find out what happens so it’s hard for the doctors to give advice when there is so little medical research on it. Sounds like we’ve all been lucky and the babies are happy and healthy.
Thanks for sharing Lottie. As I commented on a previous post, I also developed OC – after a week of itching at 36/37 weeks pregnant I took myself to the GP & got sent to the hospital in a taxi. Fairly scary and I also cried when told I was going to be induced – the consultant explained that monitoring wouldn’t really help as with OC there could be an “acute event” (i.e. the baby could die without much warning) – I’ll never forget that phrase or the fear I had. I wanted them to induce there and then but they said I had to wait til the next day. The following day I sat in hospital all day but got sent home as the labour ward was so busy – like you I had a very sleepless night that night. Luckily Flo was born safely but the consequence of being induced early was that she clearly wasn’t ready – she was jaundiced and it took a lot of perseverance to get feeding established. She didn’t get back to birthweight until 4 weeks & only recently (she’s now 4.5 months) as she properly caught up. I was also left pretty shocked by my labour experience – I had been low risk throughout and was feeling fairly calm about labour. Suddenly it was very medical, dramatic and scary. However, Flo is here safely and that’s all that matters.
Katie
Oh blimey Katie, I can’t believe they told you that although I actually wish they had said the same to me as I was just told to monitor movements and I did always think. Well if I haven’t felt the baby move for an hour (which is normal) and then think to go to the hospital it could be too late. Luckily it wasn’t but I know for many it isn’t the case. Molly too was a bit poorly by arriving early and ended up in neo natal. 4 years later you would never know, little monkey!! x
Hi Lottie
I’ve spoke about my OC story before to you, and my story was fairly similar to yours, the only difference being that my son suffered with undeveloped lungs after birth and spent time in special care. So it just goes to show that there really is risk either way when it comes to OC as early delivery can have its problems too. The way we see it is that it could have been a hell of a lot worse if we had gone full term knowing I had a condition that wasn’t improving with meds!
Last time I spoke I was pregnant with my second child, and I was very worried that OC would rear its ugly head again. I wasn’t consultant led this time either as my midwife was confident that I would know what to look out for if it did come back. At 32 weeks I had an Itching scare, at 2 AM on the night before we were due to go on holiday. I couldn’t possibly go on holiday knowing that I could have OC without going for tests. So after a fall out with my husband I jumped in the car and drove 50 miles to our local consultant led hospital do you do you have bloods to have bloods taken. Thankfully it was just the November called making my skin dry and not obstetric cholestasis.
Amazingly on his due date (Christmas Eve 2015) my second son, cooper William was born with no complications, no need for induction, and a very straightforward water birth. I was in a state of shock, I never expected to be so lucky. When you have experienced something like obstetric cholestasis in the past it really is hard to get over. It made me truly appreciate it my second birth, the kind of birth where others wouldn’t appreciate their luck as they don’t know how bad it can be.
Granted OC isn’t the worst thing that can happen to a pregnant woman only weeks shy of giving birth and I do think the outcome could have been far worse, but I am just seriously thankful I now have both my boys with me and they are safe and I’m here to tell the tale! X
Hi Ebony. Congratulations and so happy to hear that Cooper arrived safe and well and with no complications for you. It’s nice to hear another person didn’t get it second time round as I think it might give confidence to other mums who have experienced it. You do think that any bit of itching is going to be it as you just kind of expect to get it again don’t you? Molly also had problems with her lungs and ended up in neo natal but luckily only for 3 days and as you said it could have been a lot worse so I’m thankful she recovered so quickly. Hope you are settling in to life with two little ones xx
Do you know, I was sure you had originally said about your little girl being in neonatal but then I thought that must have been someone else’s story. Wow, so we really did have the same journey. It should certainly give others that have suffered OC once before a little glimmer of hope that it may only be an1 time thing. Giving birth is scary enough and being pregnant is an emotional journey without something as worrying as OC to deal with. I’m just glad we live in a time where complications can be monitored and looked after once detected… It’s just the awareness that needs promoting!! X
I know, nobody seems to really know what it is or the outcomes. I’m writing some information sheets to go in the girl’s baby books as apparently there is a high chance that any daughters may also get it in pregnancy (I really hope not). Also have already made my sisters aware that they will need to make their midwife aware when they decide to have children. Here’s hoping they are all fine. x
As a fellow OC (also known as ICP) sufferer, thank you for writing about this – the more awareness the better – ladies need to know that an itch might be more than just a scratch.
I’ve had ICP with both pregnancies and luckily I was at a hospital where they knew what to do – it does seem that around the country there are varying reposnses to it, so anyone who is feeling itchy should push to be tested.
The facebook group ICP support can be a real lifeline for those going through it.
Good luck to all itchy mummas out there!
x
Love the ‘itchy mummas’! x
I suffered severe ICP and 3 itchy babies all resulting in premature deliveries at 34, 32 and most recently 29 weeks. The itch is intense, the fatigue is chronic and the worry is ongoing.
Thankfully the support, the knowledge and the research from ICP Support was invaluable. Over a 10 year span they have seen me and supported me through such difficult, traumatic pregnancies, and with their knowledge and research my babies were born early, but safely.
The work they do is invaluable and urge all mummy’s who have an itch to get it checked! There website is invaluable!
http://www.icpsupport.org/abouticp.shtml
I really feel for you having it on all three pregnancies and I’m so happy that all three of your babies are healthy and well despite being born so early. I think it was all such a whirlwind for me as only had two weeks from diagnosis to induction so didn’t really have time to find out too much but wish I had known about the support groups. It would have been a great help and they sound absolutely fantastic. xx
I had OC (or ICP) in both pregnancies. In the first, I was diagnosed at 24 weeks and in the second, 22 weeks. My 2nd little itch is now 17 weeks old so the memories are still very fresh in my mind.
I’m so glad you didn’t suffer in both pregnancies as it is a horrendous condition to have and the itching is unbearable.
Thank you so much for sharing your story. Xx
I feel very lucky that I didn’t get it second time as I know most people seem to. It is not a nice thing to go through but happy that your newest little has arrived safe and well. xx
Oh my, the itch! Nobody can understand until they’ve experienced it. People saying ‘try not to scratch’ doesn’t help either. I developed OC at 23 weeks and spent so many nights with freezer packs wrapped in towels all over me. Porridge oat baths help too.
My hospital wasn’t so sugar coated with the truth telling me that your baby’s heart may just stop. No worry there then! Thankfully the medication helped and the itching stopped after a couple of weeks and my bloods stabilised. I had bloods every two weeks and I suppose the only positive out of it all is we got to see Dougie every four weeks on a scan. I felt that my hospital knew a lot about it and my consultant was brilliant.
Dougie was born after induction at 37 weeks and it couldn’t have happened soon enough, over 14 weeks of worry was unbearable.
I have crohns disease also and took a liver effecting drug for it throughout my pregnancy. Maybe this was the cause? They don’t know but I’m fearful for our next pregnancy but as we’ll be monitored from the start, I’m hoping it will be treated early if it develops.
It’s lovely to hear that so many have happy outcomes. Thank you for sharing xx
Why was I not told about porridge oat baths. These sound great. Nothing at all stops the itching. It was in fact how I knew something is wrong as when I had liver problems when I was 18 I had exactly the same thing. It is ridiculous and you can’t not scratch. I used to lie on the bathroom tiles which was not fun in our freezing house in the middle of winter and took to sleeping on the leather sofa at night. Anything to try and get some rest. So pleased to hear that Dougie arrived safely and hopefully you can forget the itching for a while now! x
Hi
Thank you for sharing your story. My story however did not have a happy ending. In April last year our beautiful baby girl Eliza Catherine was born sleeping at 34+1. I was diagnosed with ICP only 36 hours before she passed. This was my first pregnancy. I had no symptoms nothing until on the Tuesday night I had a slight itch on my hands so the next morning I mentioned it to my community midwife who took bloods. 2 hour later ICP was confirmed and I was sent home after being told I would be induced at 37 week. Less than 36 hours later our baby girl had passed.
We had a full postmortem to which many things pointed to ICP.
Less than 12 week later we fell pregnant again to which I am now 32+2. I’ve been having weekly bile acids tests since I was 5 weeks and this horrible condition returned at 24 week. To say I’m anxious is an understatement I am petrified. Last week I spent 4 days in hospital due to my bile acids going up to 172. I’m on the max dose of urso plus rafampacin now and slowly they have started to come down although my last reading they were still raised at 67. My consultant plans to deliver me within the next week. We know she will be early at 33 week maybe just over but we feel it’s safer for her to come out due to my fluctuating levels and how fast we lost Eliza.
I can hand on my heart say I will never have another pregnancy as I ohysically cannot put myself through this torture again. Xx
Stacey I am so so sorry to hear of the loss of your first little girl. It is heartbreaking how this condition can so quickly escalate and that was what always worried me in terms of not knowing how quickly things could change. My levels were up and down like a yo yo but when they went high they were ridiculous. Apparently I had it really badly so I’m forever grateful that it ended well. I would completely agree that in this situation delivering early is probably safer and although baby may need some time in Neo natal I can honestly say the care Molly received in there was unbelievable. Wishing you all the luck and please do pop back and let us know when baby arrives. Big hugs xxx
Much love Stacey. Will keep you in my thoughts for the next few weeks x x x x
Stacey,
I’m so sorry to read about your little Eliza. I can’t even begin to imagine what you have been through and how scarey this pregnancy must be for you.
Wishing you so many good thoughts and support for your induction xxxx
I developed ICP at 28 weeks in my first pregnancy was extremely hard as a young mum trying to get people to take me seriously was hard enough never mind asking for lots of bloods without someone telling me I was paranoid, until my ba’s rose then they couldn’t have been more supportive! My boy was born at 33 weeks! My second pregnancy I got to 26 weeks but it was only mild and my little girl was born at 37 weeks happy and healthy 🙂
I was diagnosed at 38 weeks after I commented to my midwife how my itching was keeping me and my husband up at night! They told me they would test but it was probably standard itching as OC is rare. The next day no one has called me, so I called in and was told to come immediately to the DAU! I dropped work and took a taxi there where they hooked me up for 2 hrs for monitoring then sent me home and said to come back in one week! No one mentioned anything about induction just that if I felt less movement to come in. I went home and did some google research and couldn’t stop worrying all weekend! After 3 days I went back as the itching wasn’t getting better and they decided to induce me then and there. While I was late in pregnancy it was disappointing that there wasn’t a better follow up plan in place or even standard procedure for handling, mostly seemed up to the doctors whim. Hopefully with more awareness this will improve and luckily other than a bit of jaundice my baby was happy and healthy, which is most important!
Thanks for sharing I can fully sympathize with you on how you felt. I had oc in my 3rd pregnancy but the week they diagnosed me I also had to be induced (35 weeks) so thankfully I only had a week of worry. I had however been itching for the two months prior to the induction. It was only because a reg had seen me itching whilst i was in hospital for a uti that it got picked up as a midwife told me I was dehydrated which was why my urine was dark. My 3rd is going to be 2 in May and unfortunately for me I am still itching they suspect I have a liver condition called BRIC benign reaccurent intraheptic cholestasis. Which is oc outside of pregnancy as I understand it. It often crosses my mind if oc started the condition or not? Xx
Oh, gosh still itching 2 years later. I don’t think I could cope. Sounds like you did have OC a lot earlier and I think it is so strange how most doctors just don’t even pick it up. Mine never would have been unless my friend had told me to check. I’d already asked the midwife and she said it would be nothing. Hope your itching eases up soon xxx
Just read this now . I’m 9 weeks pregnant with my 2nd baby and can feel the tingling in my feet already . I had oc quite bad with my first along with gestational diabetes . I don’t think I will be able to cope with the oc for another 30 weeks as it left me totally exhausted . Hopefully will be on some tablets soon . Such a debilitating condition
I’ve had crazy intense itching since I was 8 weeks pregnant ,now I am 27 and still itching I’ve had bloods taken which came back all normal ,I’ve been given anti-hestimine allergy creams and tablets but nothing seems to be helping ,any advice would be much appreciated.Has anyone else had bloods that come back normal , than raised .Its soo frustrating just itching and no one understanding !!
So sorry to hear you’ve had the itching Najma. It is not fun at all. My levels did go up and down but they were always high. I didn’t find out till 35 weeks though so didn’t have to deal with it for long. Some itching is normal in pregnancy but it sounds like yours is more than that. I’m afraid if your bloods are coming back normal I’m not sure what to advise. Normally OC does start a bit later on but maybe keep asking to have them repeated as it’s not something you want to miss. Keep an eye on babies movements too, as best you can, as that was one of the key factors with my diagnosis as well. Good luck xx
Thank you ,Yhh I will keep an eye on it .
Hi Najma, How did your pregnancy go? Hope you got some relief from itching eventually. I am 31 weeks and diagnosed with OC, Really scary ride ahead!
Hello , well I wasn’t diagnosed with OC no one could explain the itching to be honest .i had my baby now so thank god ! But sorry to hear about your diagnosis wish you all the best !
Hello everyone. Thank you all for sharing your stories. I am 27 weeks right now and was just dignosed with Cholestasis at 26 weeks. I guess I developed it because I had HELLP syndrome in my last pregnancy so I have had previous liver damage before. I’ve never dealt with Cholestasis before until now. so right now I’m really freaking out. I feel like the doctors aren’t taking it very seriously. They are wanting to get me to at least 37 weeks and for me to come to the doctor every 2 weeks for a check up. 2 weeks feel like forever though.😭😭 I would rather be seen a lot sooner because I’ve saw that things can change so fast. I pray everything goes well for the little man that I’m carrying right now.