Top 10 Misconceptions About ICP

One of the biggest problems with ICP is that there are so many misconceptions out there, not just among patients, but among doctors, too.  There are many reasons for this, not least of which is that few people outside of maternal-fetal medicine know much about the topic.  So, today’s top 10 list is the top 10 misconceptions about ICP.

Misconception #1.  ICP is not a danger to the baby.

When ICP was first reported back in the 1950’s, 60’s, and early 70’s, it was described as a “benign” condition, meaning that it didn’t pose a danger.  It is true that the mother almost always makes a full recovery, but nothing could be farther from the truth for the baby.  Without proper treatment, the risk of stillbirth with ICP is 15%.  Let me say that again – if ICP is not treated, 15 out of every 100 babies will die.  Sadly, this misconception is still alive and well.  Doctors learn about ICP from other doctors, and if the teacher learned that ICP is harmless, the student will learn the same.  It is so important to dispel this myth, because all it takes is proper management, which includes the medicine UDCA (also known as Urso or Actigall) and early delivery (typically 36-37 weeks) to reduce this risk to that of an uncomplicated pregnancy.  Here you can read about one of the first studies to report that ICP was not benign:

Misconception #2.  UDCA (Urso) is used only to help reduce itching.

Nothing could be farther from the truth!  Yes, the medicine Urso usually does help reduce itching for moms with ICP, but that is far from the only benefit.  First and foremost, Urso reduces total bile acids.  Bile acids are the substances that build up in the blood of those of us with ICP, making us toxic.  Urso helps get rid of them.  One serious problem related to ICP is that bile acids make our placentas age faster than normal, so they can literally die too soon.  This is bad news for the baby since the placenta provides it with food and oxygen.  Urso stops this premature aging from happening.  Another problem that ICP causes is that it can create problems with the baby’s heart.  Guess what?  Urso can prevent those problems, and protect other cells from being harmed by bile acids too.  We also now have evidence that tells us that Urso really does improve outcomes for babies.  Huge differences were seen in outcomes for babies whose mothers took Urso during their ICP pregnancies when they were compared to mothers who took other medicines, a placebo (a fake pill, usually made of sugar), or no medicine at all.  You can review the entire study here:

Misconception #3.  Frequent fetal monitoring can prevent stillbirth.

It’s really common for moms with ICP to have various types of fetal monitoring.  There are non-stress tests (NST’s) which check the baby’s heart and can detect whether or not the baby is becoming distressed.  Biophysical profiles (BPP) use ultrasound to look at many different signs of baby’s health.  Doppler flow studies check the blood flow through the umbilical cord.  For most high-risk conditions, doing this monitoring regularly can predict which babies are at risk for stillbirth.  ICP is different.  With ICP stillbirths happen abruptly and without warning.  Now, this doesn’t mean that I don’t think ICP moms should do the monitoring.  I’ve known many moms whose babies were saved when they were found to be distressed during monitoring.  It can be extremely useful, but it can’t completely prevent stillbirth.  The only way to prevent stillbirth is with the medicine UDCA and early delivery.  Occasionally at ICP Care we run into doctors who don’t want to deliver early unless the baby fails an NST.  For someone who is not a specialist and doesn’t have complete knowledge of ICP, this seems to be a smart move, because in pretty much every other condition this works.  Not so with ICP.

Misconception #4.  Mild ICP pregnancies can safely carry to full term.

There was a study published in 2002 that identified a mild form and a severe form of ICP.  It found that there was a higher risk associated with severe ICP, which had total bile acids of over 40 umol/L.  This was a significant finding, and it is used all the time by doctors to help make decisions about timing of delivery.  Unfortunately, the authors of this study concluded that cases of mild ICP need not be delivered early.  Even more unfortunately, some doctors still believe this.  It doesn’t seem to matter that there was an immediate flurry of protests from other researchers (some were even published in the same journal with the original study!).  It hasn’t helped that these researchers pointed out that mild ICP in their study had higher risk than a “normal” pregnancy and that they didn’t have a group that could be considered normal in their study to compare their results to.  It also hasn’t helped that they argued that they only studied one population and that ICP has many different variants found in many different populations around the world, or that mild ICP can change to severe ICP overnight, but it takes a week to get results so there is no way to monitor the severity effectively.  The idea that mild ICP can carry to 40 weeks or beyond has been hard to dispel, but the recommendation is that all ICP pregnancies be delivered early, usually 36-37 weeks.

Misconception #5.  If you are not jaundiced you do not have ICP.

This is simply not true.  It is estimated that only 10% of women with ICP will develop jaundice.  I don’t know for sure, but I suspect that this misconception dates back to the 1950’s when ICP was first described.  It was then called benign recurrent jaundice of pregnancy.  It makes sense that women with jaundice were the first ones to be identified.  After all jaundice is a pretty obvious sign that something is wrong!  Since then it’s been well-established that most women with ICP don’t get jaundice.

Misconception #6.  It is safer to wait until 39 weeks and give baby more time to grow and develop.

Nope.  This has been a big struggle lately, and there is a good reason for it.  The American Congress of Obstetricians and Gynecologists (ACOG) has been very concerned about the high rate of Cesarean sections here in the United States.  One major thing contributing to this is elective early term delivery – when people choose to induce earlier than 39 weeks for no reason other than convenience.  ACOG, for good reason, is trying to put a stop to this.  However, in their own words, “Avoidance of nonindicated delivery before 39 weeks of gestation should not be accompanied by an increase in expectant management of patients with indications for delivery before 39 weeks of gestation.”  In plain English this means that doctors should continue to deliver high-risk conditions earlier than 39 weeks.  Cholestasis of pregnancy is specifically listed on this same publication as one of the conditions that requires early delivery.

Misconception #7.  Early induction in cases of ICP leads to a higher risk of Cesarean section.

In the typical pregnancy, the earlier you induce, the greater your chance of Cesarean section.  This isn’t true for ICP.  Multiple studies have shown that there is no increased risk of having a C-section when you induce early with ICP.  You can see one of them here:  Why is this?  Well, it turns out that bile acids make our uterus more “irritable” – it is more sensitive to the hormone oxytocin, which is what causes contractions.  This is the same hormone that is used in many inductions, though it goes by the name pitocin.

Misconception #8.  A normal liver panel or normal bile acid test rules out ICP.

An abnormal liver function test or bile acid test can be used to diagnose ICP, but having normal results doesn’t rule it out.  This is difficult, because usually normal results are very reassuring, and it can be very frustrating for someone trying to be diagnosed when the results keep coming back normal.  However, in some cases it can take 12 weeks or longer for any lab abnormalities to show up after symptoms appear, and this observation has been documented in the scientific literature.

Misconception #9.  ICP only occurs in the third trimester.

ICP is most common in the third trimester.  About 80% of cases are diagnosed after 30 weeks.  But that means 20% are earlier, as early as 6-8 weeks.  About 10% are diagnosed in the second trimester and 10% are diagnosed in the first trimester.

Misconception #10.  Normal range for total bile acids is as high as 19 (or 24.6).

This misconception is easy to understand.  Two of the biggest labs in the United States use 19 umol/L and 24.6 umol/L as the upper limit of normal for total bile acids.  They are wrong.  A recent analysis of a pregnant population in California found that the normal range extended only to 8.5 umol/L using the same lab.  Currently the Society for Maternal-Fetal Medicine recommends that bile acids over 10 umol/L be used to diagnose ICP.  Their publication can be seen here:

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