Itching in pregnancy is normal, isn’t it? Whilst many pregnant women get itchy, particularly in hot weather, itching may also be a sign of a potentially serious pregnancy complication that affects around 5,500 women in the UK every year.
What is ICP?
Intrahepatic cholestasis of pregnancy, (ICP), cholestasis or obstetric cholestasis (OC), are all terms that refer to the same condition. It’s the most common liver condition specific to pregnancy, but it’s still missed in too many women.
Sometimes in pregnancy, the flow of bile becomes sluggish, causing bile acids to build up in the blood stream. Bile acids help us digest our food but they’re toxic in large amounts, and although they’re not life-threatening for the mum-to-be, they can cross the placenta and reach the baby. Some experts believe that at high levels they may cause the baby’s heart to stop working. High bile acid levels have been associated with premature labour, fetal distress and, in the worst cases, stillbirth.
Why Does ICP Matter?
Your Pregnancy Doctor are working with the charity ICP Support to raise awareness of this important condition. ICP Support is different from other organisations providing information on cholestasis because two of the key workers in that charity also work in research into the condition, meaning that they are at the cutting edge of the most up-to-date scientific evidence and thinking. We spoke to Jenny Chambers who founded ICP Support and works for ICP expert Professor Catherine Williamson as her Clinical Trials Coordinator. Tragically, Jenny knows from experience how vital it is to be aware of cholestasis in pregnancy.
‘I have a complicated obstetric history. I’ve had four babies, but sadly only two of those babies are alive. I had a stillbirth at 39 weeks and a stillbirth at 37 weeks. I had a red herring in between the two stillbirths, which is my eldest son Alex, who was delivered alive at 38 weeks. The commonality between the three children was the itching, which I felt couldn’t be normal, none of my friends at antenatal class itched like I did.
But I now know that at that time, all healthcare professionals were telling pregnant that itching was normal. Even if ICP, or cholestasis was recognised it was always thought to be a benign condition.
Sadly, looking at the notes from my pregnancy with Olivia, the hospital had performed liver function tests. They told me they were normal, and they weren’t. The tests were also abnormal in my pregnancy with Alex, and blood tests taken in my local hospital the day before my first baby, Victoria, died were also abnormal.
I had already had two stillbirths by the time I was given my diagnosis of ICP. It was frustrating and heart-breaking because I had tried so hard to tell them that the itching I had wasn’t normal. I had also asked to be induced by 38 weeks which was what had happened with my son Alex. But I was told that there was nothing wrong with me; that Victoria’s death was ‘just one of those things and that my son Alex had only been born early because of the previous stillbirth. Eventually they agreed to induce me at 39 weeks but I went into labour just before that time and Olivia was stillborn. Not long after this I was told by a new consultant that I had ICP and it was clear that women were still being told that itching was normal. I felt I had to do something to raise awareness.’
Since that time, Jenny has worked to make women, doctors and midwives more aware of ICP. The message is getting through, but there is still work to do to ensure that the distressing symptoms are not dismissed as normal.
What Are the Warning Signs of ICP?
The characteristic symptom of cholestasis is itching, which can be severe or so mild that some women may not think to mention it to their midwife or doctor. It is more often on the hands and feet, but Jenny and ICP Support want to emphasise that the itching can be anywhere:
‘ICP typically presents with itching on hands and feet, but as a charity, we want to emphasise that the itch can be anywhere on the body and most women report that it’s definitely worse at night. That itch at night is different, it’s a much more intense itch. It’s debilitating, I used to want to jump off the roof with it!’
‘So many people become fixated on the hand and feet business. But I have just been speaking to the grandmother of someone whose baby was lost last year, and she only had itching on her abdomen.
‘It’s difficult because twenty percent of women will itch in pregnancy and only a small proportion of those will have cholestasis. So, it is a complicated condition to diagnose and manage’.
It’s important to see your doctor or midwife urgently if you are suffering from itch. In the words of ICP Support:
“Scratching can be more than just an itch”
What to Look For
Itching: The itching of cholestasis can be severe, unpleasant and extensive. It can be worse on the hands and feet, but you may be scratching anywhere and everywhere. Many women notice that the itching is worse at night.
You may also notice:
- Urine colour: This may appear darker than normal
- Pale poos: The bile is what gives your bowel movements their brownish hue. With less bile in the digestive system they can appear unusually pale.
- Jaundice: Less frequently there may be a darkening of the skin and a yellow tinge to the whites of the eyes.
However, very many women will not notice any jaundice or change in their urine or stools. The message is that if you are worried about itching, wherever it is, see your doctor for a blood test.
What Causes ICP?
ICP is thought to be caused by combination of the pregnancy hormones together with a genetic tendency. Women expecting more than one baby or women who have had fertility treatment appear to have a higher risk of developing it. It may also involve environmental factors because there are more cases in the winter months.
How Does ICP Affect the Baby?
ICP is known to be associated with an increased risk of spontaneous preterm birth, fetal distress and, in severe cases, stillbirth. The exact mechanism for this is not fully understood, but experts and researchers into ICP believe that very high levels of bile acids crossing into the placenta may affect the function of the baby’s heart. They may trigger problems with the heart rhythm that may not be picked up on the CTG. The effects on fetus can be sudden and devastating, as Jenny knows only too well:
‘With Olivia, the midwife listened to the fetal heart-beat on the Monday afternoon. By eight o’clock that evening, she had died.’
This means that effective diagnosis of ICP and careful monitoring of bile acids is essential. Being aware of your baby’s pattern of movement is important, but the impact of ICP may be too sudden for movement changes to be noticed.
Jenny’s experience together with one from Your Pregnancy Doctor’s consultant Dr Keith Duncan’s book, highlight the importance of taking control of your own health in pregnancy. Don’t assume that a blood test is normal, because you haven’t heard anything. Chase the results and make a note of them.
‘I was having a relatively easy pregnancy with my second child when I started to get itchy feet and hands, especially at night, at around 36 weeks. I went to my GP but I really didn’t feel too concerned and the doctor seemed relatively relaxed too. She took blood to send to be checked. I left the GP’s room having been reassured that I wouldn’t hear anything unless there was a problem.
I continued to itch and slept intermittently by putting cold flannels on my intensely itchy feet. I didn’t hear anything for a week when I was rung up by the hospital. The results showed that I had obstetric cholestasis and they recommended that I should have an early delivery. That day.’ – Lara, West Sussex
ICP Support have a support line and Facebook groups offering information and guidance. By working together with your healthcare professionals, you can ensure that you and your baby receive the best possible care.
Find out more about ICP
Over the next few weeks we will be sharing articles with more information about research into ICP, the best ways of managing the condition and ways of maintaining the safety and wellbeing of your baby. Jenny Chambers told Your Pregnancy Doctor that an exciting new medical paper is about to be published:
‘We’re expecting a really high-impact medical journal to publish an important meta-analysis on ICP, any day now. With time, this may have the effect of changing clinical practise.’
We will report on that research as soon as it is released. In the meantime, you can find out much more about ICP on