By Jenni Rutter, October 2007

My experience with obstetric cholestasis has a very positive outcome. I am now a very proud Mum to healthy 8 week old twin boys, Toby and Joshua.

I should perhaps have been more wary of what might be around the corner during the third trimester of my pregnancy, when my consultant began saying at the end of each appointment in a slightly surprised tone: “you really are doing rather well”. My pregnancy was indeed straightforward right up until 33 weeks. Apart from anaemia (standard with twins) and finding out I was RH negative, my pregnancy had followed the text book.

By 32 weeks I was becoming increasingly jittery about not knowing whether I would be having a natural delivery or a c-section, and when. But I tried to remind myself that all the uncertainties of delivery were just a necessary step in relinquishing the usual control I had enjoyed exercising over my life as a 35 year old professional career woman.

It was a very warm weekend in late August when my bump began itching. My best friend was visiting from Germany with her 3 month old so I was slightly distracted. I was 33 weeks pregnant and my belly was enormous. When I look back now at photos we took that weekend I find it impossible to believe that I could have been so big. I look like I have a bowling ball stuffed up my top and my bump is so perfectly round that it looks like I am faking a pregnancy, Hollywood-style.

I had read the “What to Expect” bible’s section on itching and noted that it was something to look out for. But it didn’t seem to apply to me. My hands and feet weren’t itchy - only my bump and to a lesser degree my upper chest. It seemed so logical that my bump would be itching given the incredible stretching it was doing. I reclined on the couch that weekend like a huge whale, door to the garden wide open and naked to the waist, with a wet muslin spread across my tummy and chest. It took a real effort of will not to scratch myself. The intensity of the itching should have warned me something was not quite right, but I simply made a mental note to mention it to my consultant at my next appointment.

It was lucky that I did. When I saw him the following Wednesday and told him about the itching he immediately sent me for a blood test. On Friday his assistant rang to say they suspected obstetric cholestasis and I should make my way to the hospital (St Thomas’s) for a chat and to check on the babies. I put the phone down and burst into tears – I couldn’t believe something was actually going wrong. My husband very sensibly pointed out that stressing was far worse for the babies than anything else, and I had to remain calm. With his help, I did.

I was told it would take a week for my bile acid results to come back and for OC to be confirmed. In the meantime, my ALTs were high and I went to hospital to have the twins’ heart-rates monitored and for another blood test. The heart-rate monitoring was a bit hit and miss – the midwife didn’t manage to get a good connection and left us alone in a room for 10 minutes with a loud alarm going off indicating no heart rate. We weren’t too worried – but the noise was well and truly winding us up by the time she returned. The following day we received another call – to say that my ALTs had gone up further and I should come back to hospital on Sunday for further monitoring. On Sunday morning I had a 3rd blood test and more monitoring. The twins seemed to be doing fine, but my ALTs were soaring and at midday I was given a steroid injection to help the twins’ lungs develop in case I needed to be delivered early. I was 34 weeks and 4 days pregnant and my consultant said the babies were “still better off in than out”.

That afternoon my consultant decided to check me into hospital for the night to keep an eye on me. My husband was duly sent home for a suitcase. Thank goodness I had begun packing it a week earlier – just in case. I still felt physically fine, the itching wasn’t as bad and I was no more uncomfortable than usual. However, overnight I developed protein in my urine and my blood pressure (which had been low and stable throughout my pregnancy) started to creep up. Photos taken that day show me very red in the face and a little puffy. By Monday lunchtime my consultant was concerned that I was also developing pre-eclampsia. At 3pm, after another blood test showed a further rapid hike in my ALTs, he told us he wanted to deliver me that night by c-section. Suddenly the birth of our twins was upon us, with only 5 hours to get used to the idea! I was 34 weeks and 5 days pregnant. The special care baby unit was put on notice of possible new arrivals, while my husband and I tried to relax and at the same time brace ourselves for what was to come.

The c-section was straightforward and our twin boys were born at 9.44pm and 9.45pm on 3 September. They were in perfect health. Toby weighed 5lbs and Josh weighed 5 ¾ lbs. They needed no special care, and were moved with me to the High Dependency Unit for the night. Spending a night on this ward was not a pleasant experience – I had a tight blood pressure band on my arm which took a reading by squeezing all life out of my arm every 10 minutes or so, and I was of course catheterised and paralysed from the lower chest down. But as I lay there watching the sun rise over the Thames and light up the Houses of Parliament and the London Eye, I reflected on the sheer beauty and perfection of my baby boys and the fact that my consultant had quite possibly saved their lives by acting so quickly to identify and deal with my condition.

Weeks later, my consultant confirmed that my bile acids had been 17.2 (below 6 was a safe reading) and at one point my ALTs had been 200 (at St Thomas’s less than 24 was considered safe during pregnancy). His main concern had been how fast my condition deteriorated. As I write this 8 weeks later, I am not aware of any lasting side effects.

Obstetric cholestasis gave me premature twins, and an interesting story to tell my boys when they are old enough, but has had no other effect on me. I know how lucky I am to have had such excellent care, and such healthy babies. What scares me more is that I hadn’t taken the itching seriously, and things could have been so different. Although OC is more common with multiple pregnancies, I still feel there should be greater awareness of this quiet but potentially very serious condition.

© Jenni Rutter

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By Annette Harris, April 2007

My OC Stories

I have had 3 pregnancies, the first was symptom free, but I developed OC in my last two. I hope it may be interesting to other women to hear my experience of having the condition. Although it was a little worrying at times it didn't involve any medical trauma or what felt like an emergency to myself or my children.

OC Pregnancy number 1

It was my second pregnancy, (I'd previously had a son 7 years earlier) and things had been progressing really well, I'd felt quite sick in the first trimester, but once that has faded it had all been plain sailing. I'd given up work 6 weeks before my due date so I would be able to do the school run with him when he returned to school in the September. (my due date being October). I had planned a home birth and was enjoying pulling together all my kit for that

I'd noticed in the night some itching on the soles of my feet at around this time, but it was nothing for me to worry about, it soon stopped and I carried on as normal. I was more concerned with the terrible indigestion keeping me up all night! I ignored the itching for a couple more weeks, as I felt fit and well, I remember breaking down a large shelf unit that had been in the house when we bought it, on the day now known as 9/11. I'd been so busy I missed all the news reports.

As time progressed the itching became more and more widespread. it was now up my ankles, but only at night. it was as if I had been bitten by a mosquito as once it started it wouldn't stop. I'd read an article in a pregnancy magazine about a lady with OC but still didn't believe it was anything like my itching as it was only during the night that it started. The midwife made a home visit and I told her I was fine, I didn't mention the itching because in front of her I was symptom free and showed no probems. She dropped off my homebirth kit for baby to arrive. That night my itching had progressed to my abdomen and I had to go downstairs to have a good scratch as it was keeping me awake. With the magazine article ringing alarm bells in my ears it was now that I decided my itching wasn't normal.

So I went to my GP and was referred for a liver function test. I was told the results would take roughly a week to come back. 3pm that afternoon I got a call from my GP to go to the hospital as my LFT had come back extremely high, and to take a bag in as I would probably have the baby! I was just 38 weeks. On arriving at the hospital I was ushered into a room with a bed and lay there as they were taking endless blood samples, wee samples, taking my blood pressure. My husband sat next to me, we were trying to think of a name for a baby as it was no going back. At one point they thought I had pre-eclampsia as there was protein in my wee, and the doctors were examining my hands and feet where I was itching. "hmm you've got quite sweaty hands" said the doctor. "that's because I'm a bit scared" I quietly told them.

The whole process was quite a shock, and difficult to get my head round, one minute I was planning my home birth and the next I was wrapped up in hospital strapped to a monitor. They decided to admit me "to get a good rest" and they'd induce me the next day. My advice is never be admitted if you can avoid it! Maternity wards are near baby wards, so a good rest is out of the question as there are babies bleating all night..and very often a pregnant lady with a snoring problem in the next bed to you!

The following afternoon after a rather rough internal examine to see if I was 'favourable' I staggered down exhausted to the delivery suite to have my waters broken, and later a syntocinon drip to bring on my contractions, then 6 hours later I had my daughter, Madeleine with no pain relief or stitches. She was 6 lb 7oz. An hour later they took more blood to check my LFT's as they should have dropped. However the next day they said that my LFT's had risen again and that I had to have a full blood screen for Hepatitas infections. I was extremely upset by this news (particularly as they wouldn't let me go home) However my next blood tests came back normal. They thought that the synto drip may have caused the increase in my LFT and bile acid results (the thinking was that pregnancy hormones cause the OC, and so the artificial pregnancy hormone raised it higher).

A week later I had more bloods done and all liver functions were back to normal and my first experience with OC was over. My daughter developed mild jaundice but this is something that a non OC baby could have got. She required no treatment for it.

OC pregnancy number 2

Three years later I found myself pregnant again. I felt a little sicker (who am I kidding I felt awful) in the first trimester, and as I had a history of OC I was put under consultant care. It was decided that at 33 weeks I'd have weekly blood tests to see how my liver functions were progressing. A relatively normal pregnancy then progressed with me having a mild wobbly thinking I was itching, at 12 weeks and asking the GP for early LFT's, but all turning out normal.

At around 34 weeks I began to feel confident that the OC wasn't going to rear its head again and my thoughts turned to the possibility of a home birth again, I trotted along happily to the hospital clinic for my weekly blood tests. At 35 weeks I woke up in the night with pain under my ribs on my right hand side. I did the school run and felt in terrible pain. I spent the day looking up gall stones on the internet as I thought I had some kind of problem (thinking it wasn't OC as my bloods had not shown anything up and I had no itching) I actually felt quite sick, and very sore, and didn't want to be alone. That evening the consultant rang and said that my OC had returned as my last TWO blood tests had shown raised LFT's and they were getting higher. I went to the hospital the next day and was rescanned, and monitored...and of course more bloods (if you get OC you soon get used to the pin cushion arm!) I was immediately put on ursodeoxycholic acid (to control my rising bile acids and liver function) and vitamin K (to help with blood clotting) for the next 7 days to get me to 37weeks when I would be induced (I felt a bit silly for thinking I'd got my hopes up for the homebirth!) and as I was in such pain I was referred for a liver ultrasound scan.

Every day that week I had to go ito hospital to be strapped to a monitor to ensure that baby was lively and happy. I also had to have further blood tests as the 'urso acid' took a while to kick in and my LFT's were getting higher rather than lower, but after a couple of days they were falling again. I made the mistake of asking my consultant how high my LFT's had got, he said "Oh they are very high, but put it this way, when you were admitted in your last pregnancy with OC, your blood results were FOUR times higher" ...ooops! My liver scan showed no problems at all, and I never developed any itching symptoms. My rib pain settled down after being on the "urso acid' for a couple of days, which was a relief as I was finding it difficult to sleep.

At 36+5 weeks I had a sweep (internal) to hopefully kick start my contractions, which after a day of niggling worked and my second daughter, Laura was born when things finally got going she was 5lb 11oz. at 37 weeks gestation. This time my LFT's went back to normal almost straight away.

Copyright Annette Harris

It was another day into a textbook pregnancy at week 33 when I found out that my liver was poisoning my baby.

I’d been to the chemist looking for some cream to put on my itchy hands and feet.  They’d been like that for a couple of weeks but I’d put it down to yet another pregnancy-related ailment, as if swollen limbs and five trips a night to the loo weren’t enough to be going on with.  It was only later that afternoon at a routine ante-natal appointment that I realised it would take more than a moisturiser to stop the intense heat emanating from the palms of my hands and the soles of my feet.

Five minutes later I was having a blood test; five hours after that I was sitting on a hospital bed surrounded by a team of doctors and getting a steroid injected into both my legs to strengthen my baby’s lungs. “What’s the worst-case scenario?” asked my husband. “Death”, replied the midwife.  Had the illness been missed, my son could have been stillborn.

It was a night we will never forget. Just a week earlier I had been at Cardiff’s Llandough Hospital for a tour of the maternity unit. Now my husband and I were sitting in the same ward trying to comprehend what we were being told. I had Obstetric Cholestasis, a liver condition that is thought to affect around 1% of women during pregnancy.  There is no cure except early delivery of the baby. All I could understand that night was that my body was poisoning my baby.

I was put on medication in an attempt to stop toxins from passing through the placenta to my baby. From then on it was a question of getting through each day until the baby was mature enough to survive outside the womb.

The staff at Llandough knew their stuff and for this we will always be grateful. I was diagnosed immediately and received excellent care with daily heart traces and the support of a super-confident and able consultant who had handled many similar cases before. But had I lived in a rural area outside of the city where not so many cases are seen I can’t help feeling it may have been a different story.

The medication I was prescribed appeared to start working after three days and my husband and I breathed many sighs of relief. The itching wasn’t as bad, and for two nights I didn’t feel the need to walk barefoot on the cold stone tiles in the kitchen in the middle of December. But the relief was short-lived. The following week the itching got worse and I knew deep down that the levels had started rising again.

Twice-weekly blood tests confirmed that the levels were on an upward trend. The doctors didn’t know why and could not tell me what was causing my liver to malfunction.

One theory is that the liver can’t cope with the high levels of hormones in pregnancy and this leads to a reduction in the flow of bile which helps get rid of waste products. The build up of too many bile salts in the blood causes the itching and in some cases jaundice in the mother.

Knowing my baby could die at any moment inside my womb and being powerless to do anything about it made me feel desperate. I only felt safe for the half an hour each day I was hooked up to the heart monitor which confirmed that yes, he had come through another night.

But as I left the hospital each morning I would close my eyes and walk slowly to the car, thinking of cunning ways I could stay at the hospital so they could keep checking he was still breathing. Each day I had no idea how I would spend the 23 hours that loomed until I could come to the hospital next.  At home I was told to feel for movement every hour. I woke several times during the night poking my tummy to get a reaction.

Every day I would ask the hospital midwife if it was possible to deliver him yet. I just wanted him out, where I could see him and touch him, regardless of the consequences. If he had to go to the Special Care unit I didn’t care; we could get him better if he was on the outside. It was a gut feeling that strengthened as week 34 and week 35 passed. Doctors were treading the thin line between the risk of stillbirth and damage to the baby if born too early, insisting every day that we had to wait.

Ten days before Christmas I was admitted to hospital but there was nothing the doctors could do except watch and wait. It was still too early for him to be born. In the middle of the night I called the midwife several times to put icepacks on my feet and I slept fitfully with my arms around my huge tummy.

I knew my baby would have to be delivered by week 37 - the risk of stillbirth increases dramatically after this time. Again doctors don’t know why. But when the poison in my blood increased once again, three days before Christmas, the consultant was willing to take no more chances and booked me in for a Caesarean section the following day. I knew I could not have gone through another week wondering if my baby would survive Christmas.

Tom Waters was born a healthy seven pounds, despite being nearly a month early, at 12.36pm on December 23rd. I kept asking if everything was ok. I was sure there would have been something wrong, but apart from being a bit cold and difficult to heat up, our baby was fine. I held my little sparrow as I had nicknamed him, all night in my hospital bed. I was the only one on the ward on the 25^th December and we spent our first Christmas Day together as a family.

We were lucky. Many women fail to mention signs of itching, believing, like I did that it is just another annoying side effect of pregnancy, and it is only after a stillbirth that they remember having suffered it earlier. Apart from the risk of stillbirth OC does not seem to cause any other complications for the baby, and women who get it go on to recover completely with no damage to their liver. Unfortunately however there is a very high chance that it will strike again in subsequent pregnancies and earlier in the term.

While pre-eclampsia and other serious pregnancy-related illnesses are given extensive coverage, OC is not. It is clear that more research needs to be done into Cholestasis. Mothers-to-be as well as the medical profession certainly need to be made more aware of the dangers.

My first pregnancy is over and the OC is gone, but its legacy lives on.  I’ll never be free of it. I know that if I ever want Tom to have a little brother or sister I run the risk, a high risk, of Obstetric Cholestasis returning. It’s a risk I am not looking forward to taking again.

copyright of Felicity Waters