Your Stories 2005

I am 31 weeks and have been hearing all sorts of stories, some of which is making me worry. I started itching at 29 weeks and after reading a pregnancy book heard about cholestasis. I was told by my midwife about the itching and she send me to a blood test the next morning she phone me to go to the day assessment unit where they checked the baby’s heartbeat and did a scan to see how the baby was growing and all was fine. Now I am going to hospital once a week, is this OK? Or should I be seen more than once a week. I have also been told I will be having the baby at 38 weeks is this a good time or would it be best to have it before this time?

I am pregnant with my 4th child. I have 3 healthy boys and had cholestasis with each of them. I had my gallbladder removed after the 2nd child but still had the condition again. I am afraid of having it again and worried about the long term effects on my liver. My doctor does not want me to have this baby. Help!!

Our first baby Lily Rose was stillborn at 40 weeks. The cord was 5 times round her neck and this was given as the cause of death as no other abnormalities were found on the autopsy however my current consultant does not agree with this necessarily and thinks that there may have been another cause which was not identified. Our daughter appeared to be completely normal in every way. I had a very normal pregnancy until the third trimester when I developed polyhydramnious. I also developed severe itching in my legs and feet but was told that was normal in pregnancy due to hormone levels etc. I was never told about cholestasis although I did have more regular scans to check the amniotic fluid levels and I was given a test for gestational diabetes which was negative. I am now 36 weeks into my second pregnancy and again have polyhydramnious and itching all over my body. I have also been feeling quite nauseous and generally under the weather. It was only today at my regular hospital appointment when I happened to mention the itching that I was told that this could be a symptom of cholestasis and that it can be related to unexplaind stillbirth.

I am booked in for a caesarian at 38 weeks and 5 days anyway due to our previous circumstances, but have been told that if the results for cholestasis come back positive I will have to be sectioned between 37 and 38 weeks. There is no way I am prepared to wait until 38 weeks, which is around the time our daughter died, and risk losing our second baby. Our son currently weighs approx 7.5lbs and is in good health. If the test is positive I will not rest until they agree to section me at 37 weeks I have been trying to persuade the doctors to do it earlier anyway as this pregnancy has been too scarily similar to the last one and I have had a very strong instinct that this baby needs to come out as soon as possible.

Although this condition is very annoying and uncomfortable it will finally force them to agree to section me earlier. I would advise any woman who has even the slightest instinct that something is wrong in their pregnancy, no matter how trivial it may seem, to ask lots of questions and harrass the doctors if they have to. Do not rest until you are thoroughly checked out and all of your questions have been answered to your satisfaction. There is nothing we can do to bring our daughter back and maybe the cord accident was the cause of death, but had I known about cholestasis at the time maybe Somebody would have picked up on it and she would still be here. We will never know but will make sure that every possible thing is done this time to avoid history repeating itself. Trust your instincts and don't be fobbed off by anyone - even doctors don't know everything. I will post an update when we finally get our baby and all is well.

I developed pregnancy cholestasis during my first pregnancy. On 30th Dec 2004, I recognised the symptoms "severe itching, light coloured stools and dark urine" immediately and made an appointment with my GP. Bloods were taken and my GP advised that if the tests confirmed OC I would be contacted that day (new years eve) as the sugery would be shut for the next 5 days over the New Year period. I called the surgery that evening as I had not heard anything and was advised that no results had come back therefore the tests would be normal.

The itching disappear a few days later, so with that and the lack of a call from my GP I laid my concerns to rest. Two weeks later I mentioned that I had had an itch to my midwife, she said nothing and I returned home. 1hr later I received a call from a GP to advise that my tests from New Years Eve were abnormal and could I come in for more tests. The next day the GP called me to advise my results were back and more abnormal than before I was admitted to hospital that afternoon and induced the next day (38wks).

I am pregnant again with my second child due in June. Should I develop symptoms this time around I would visit the hospital(labour ward)rather than visit my GP, I simply think that GP's don't see enough cases to understand the seriousness of the condition and take prompt action that may save your baby's life. - Gillian

I have had obstetric cholestasis three times. My three babies were born at 37 weeks 34 weeks and 33 weeks. My youngest is only 12 days old and still in S.C.B.U she is doing really well and we are hoping she will be home for Christmas. I knew the signs straight away but that didn't help as it took the doctor 3 weeks to give me a blood test even though I'd had it before. I'm fine now the itching stopped as soon as the c. section was over we are just worried about our daughter. - Joanne

I was diagnosed with obstetric cholestasis when I was 7 months pregnant with my third child. It was the constant itching which made me seek medical advice. My G.P sent me straight to the maternity hospital and I was kept in overnight for tests. My consultant then explained about the condition and advised me I would be induced at 38 weeks. Meantime I had to attend the hospital twice a week for tracing. My son was born a healthy 6lb 10oz. That was five years ago and I am now four months pregnant with my fourth baby. I was worried about the cholestasis re-occuring but my consultant told me that there is a 40% chance of it happening again and thus far I appear to be symptom free. The hospital have taken base line LFT(liver function tests)for comparison in case anything happens in later pregnancy. I hope it doesn't occur again but I know that if it does it will be caught early and I know what to expect. - Tracey

I am 35.5 weeks pregnant and suffering with cholestasis. My mum had it with 2 pregnancies and so I was looking out for symptoms myself all through pregnancy. Took a bit of persuading the midwives to take my itching seriously. They kept saying it was normal in the later part of pregnancy. I knew the itching I had was far from normal!! However anyone with extreme intense itching especially if it gets the soles of your feet and palms of your hands should really push for a diagnostic blood test (called bile acids). Luckily for me I only got symptoms a week ago. The itching was unreal but I've been started on ursodeoxycholic acid which has helped a lot. Still itch a bit now but I've found cool baths and putting my poor itching feet in buckets of cold water really helps to sooth it down. Only seeing the doctors at hospital on a weekly basis as induction for me has been scheduled at 37 weeks. I'd like to say its a scary thing to be told you have a risk to your unborn baby, but I came out ok as did my sister. My friend had it in 3 pregnancies and was on the same medication as me, induced at 37 weeks for all 3 babies and they are all fine. I'm really hoping the stories from people that it settles down quickly after birth are true. Being pregnant is emotional enough without being told they have a liver disease. Good luck to anyone who gets diagnosed with this. Remember your not on your own. Its not nice but with monitoring and medication is manageable and will go away. - Pam

I had cholestasis with my second child and was induced at 38 weeks. I am now 4 months pregnant with my 3rd child and worried in case I get it again. What I find really frustrating is that nobody seems to know much about the condition! What are the chances of getting it again? my midwife of doctor don't seem to know! - Emma

My daughter has just turned one. While I was pregnant in 2004 around 5 months I started itching all over. My legs were the worst and I couldn’t sleep. I would wake up will my legs bleeding because I had been scratching my legs with my feet! I went to the doctors as I had clinic and told the midwife who looked slightly worried. She phoned the hospital because she couldn’t remember the name of the test or what to put on the bloods form (I’m not entirely sure which one) this made me realise that it wasn’t very common or that something serious could be going on.

She told me not to worry but that I must make sure what my results were. The next week while in ante natal clinic I was given an appointment to see the consultant, he gave me Piriton to help with the itching.

Not at any point was I given any information to what I had. I couldn’t sleep at night and I started sleeping all day. I was having Braxton hicks all the time and would be really strong in the evening. My partner just said I was worrying to much but he couldn’t feel the waves of pain or the itching, he also slept like a log every night!

When I was 32 weeks I started going to the hospital every other day to have bloods taken and to have the monitoring of my baby. The midwife looking after me here was so helpful. She told me what I had and that it could be dangerous to the baby. At 37 weeks I was induced as my bloods came back and the consultant didn’t want to wait any longer.

It was only 3 weeks ago (October 2005) that I found out I could have lost Aderyn to this. I think that more information should be given to sufferers of this. I know it may have worried me but at least I would have known. I have also been told that I will more than likely develop this in my next pregnancy. this does worry me but mostly because I know how annoying it will be. I know that the midwives do everything they can to help.- Carys

The first part of my pregnany was perfect I did not suffer morning sickness at all and apart from a growning bump I would not have known I was pregnant. Then at 30 weeks I became very unwell, I was feeling very sick and dizzy and very itchy. I was told by my doctor it was all part of being pregnant and there was nothing wrong. The itching was getting so much worse I had thrush a rash over my arms and legs. I went back to the doctors and was given a blood test the results came back positive for Cholestasis. I was then given a scan to see how the baby was doing and also a kidney scan. I had to go into hospital every other day for a trace and a blood test. My little boy was born at 37 weeks weighing 6lbs 3oz and was perfect. My advice to mothers who suspect this condition is get to your doctors for a blood test, it is so easy to detect but can be fatal if left.- Donna

I'm 5 months pregnant, and I have cholestatis.., my first symptons, where headaches, nose bleeds, constipation, indigestion, tiredness, vaginal infection, very itchy rash in my lega and fore arms, nauseas, vomiting started in this order. Now the Doctors are checking my bloods every 72 hours, to monitor my condition.

But I think that, everyone needs to know in the beginning of a pregnancy take care about these. Because if I had known that the lack of folic acid causes cholestatis and is very dangerous for the baby I would have taken precautions.

I need to know if I’d taken folic acid in early pregnancy would I have prevent this and I need to do now. Thanks for the answers!

I experienced cholastasis nearly 4 years ago now, my doctor had never had a patient with it, and the midwife didn't spot it either. I was hospitallised at 36 weeks, as my mother had read an artical and rushed me to the hospital where tests and monitoring was done for 2 weeks. I had johnny at 38 weeks, he weighed a very healthy 8'1/2llb. Symptons vanised straight away!!! Now I am 5 weeks pregnant, and worried!! will I get it in the 1st trimaster? will I get it again? I have searched the web and from what I can see no more evidence has been found!! I feel very worried!! - Nicola

Obstetric Cholestasis Support and Information Line

The aim of the Obstetric Cholestasis (OC) Help and Information Line is to provide support to mothers who have the condition and information to those who think they may have had the condition but need to be diagnosed.

Obstetric Cholestasis Support and Information Line
4 Shenstone Close
Sutton Coldfield
B75 5UH

Tel: 07970 367973 - Jenny Chambers

Fax: 0121 353 0699

email JennyChambersOC@aol.com

British Liver Trust

The British Liver Trust is the national charity for adult liver disease and they endeavour to inform, support and advise people who are concerned about or living with liver disease, to enable them to make informed decisions about their lives.

British Liver Trust
2 Southampton Road
Ringwood
BH24 1HY

Tel: 0870 770 8028

Fax: 01425 481335

Email: info@britishlivertrust.org.uk

www.britishlivertrust.org.uk