New baby born to mother with ICP



Frequently Asked Questions of Intrahepatic Cholestasis of Pregnancy (ICP)

Intraheptic Cholestasis of Pregnancy Symptoms

I have a rash all over and I itch everywhere! Is this ICP?

Itching is one of the most common symptoms of ICP, but the question to ask here is – Is the rash what is causing the itch? or did scratching cause the rash? There is a complication during pregnancy called PUPPP that presents with a rash and is accompanied by severe itching. In this case the rash is the cause of the itching. Often, a woman with ICP will scratch herself and cause a rash-like appearance to her skin. There are small bumps sometimes associated with ICP and are called prurigo nodules. When in doubt as to which came first, the rash or the itch, a healthcare provider can order a serum bile acid test to be sure. In a handful of cases, ICP has indeed caused a rash, but this is not typically how it presents. It is also possible to have both PUPPP and Cholestasis of Pregnancy. See symptoms page for more information.

Is itching in the first trimester too early to be Intrahepatic Cholestasis of Pregnancy (ICP)?

ICP has been diagnosed as early as the first trimester of pregnancy, even as early as 8 weeks’ gestation. If you are itchy which tends to be worse at night, your healthcare provider should request a bile acid test and liver function test to check the levels. If the results come back normal and the itching continues, both blood tests should be repeated. Research has shown that some women can itch for some time before bile acid levels rise above normal. Your healthcare provider may want to also rule out other possible causes of the itch. Note there is research to suggest that developing ICP this early increases the risk of certain complications such as respiratory distress or fetal distress, yet there isn’t any evidence showing there is an increased risk of stillbirth as long as being treated for ICP. However, research has shown that you have an increased risk of early spontaneous labor.

Why is the itching worse at night?

The reason is not known; however, it has been suggested that it might be due to circadian fluctuations in pregnancy hormones which is (of biological processes) recurring naturally on a twenty-four-hour cycle.

Is it normal with ICP to have a pain in my right side – Right Upper Quadrant (RUQ)?

Some pregnant women with ICP have pain on the right side under the right ribs and others mention the pain in the back just below the right shoulder blade. The pain has been expressed as debilitating and uncomfortable. There are some women that have the RUQ pain begin before the more common itch symptom. Be sure to speak to your doctor about the pain to have it checked with an ultrasound.

Does ICP cause nausea and loss of appetite?

Some women with Intrahepatic Cholestasis of Pregnancy find it difficult to eat due to a severe loss of appetite. It can be difficult or even impossible to force down enough food to maintain adequate weight gain. Some women even lose weight despite their best efforts. Others have nausea and/or vomiting.

My healthcare provider said if I had Intrahepatic Cholestasis of Pregnancy (ICP), I would be jaundiced. Is this true?

There are many symptoms associated with ICP. Mainly itching, however not every ICP patient has all ICP symptoms. One does not have to be jaundice to have it. There seems to be a misconception that if a patient has ICP she will always present with jaundice (yellow appearance to the skin). Only a very small percentage of women get jaundiced during ICP.

Why don’t Histamines such as Benadryl work for the itching?

ICP itching is different than normal itching because the cause of the itching is internal, and more specifically, it is either directly or indirectly caused by bile salts in the bloodstream. “Normal” itching is caused by histamines and it can often be treated by topical lotions or antihistamines. Itching caused by ICP does not respond to either because of its internal nature.

Are there other ICP conditions associated with the disorder?

Compared with women who did not have ICP, women with ICP were more likely to have gestational diabetes and preeclampsia.

Testing for Intraheptic Cholestasis of Pregnancy

Is there a file to send my healthcare provider on ICP? I need medical referenced journals & articles!

Yes you can email your healthcare provider the Healthcare Professional Brochure a useful resource to aid in the diagnosis and management of Cholestasis of Pregnancy. And the ICP Infographic PDF file with the symptoms, diagnosis, treatment etc., and each section links to Medical studies & references.

My bile acid tests are normal. Why am I still itchy? Should I have another blood test?

Please request a copy of blood tests both bile acid and liver function blood test to review results firsthand. It is important to be retested every 1 to 2 weeks with persisting symptoms as bile acid may take several weeks to show elevated results in blood work. Research has shown that some women can itch for some time before bile acid levels rise above normal. In ICP, Liver Function – ALT and AST may rise before or after serum bile acids. Lab evidence of cholestasis includes elevated bile acids (> 10 umol/L) per Society of Maternal Fetal Medicine.

Is fasting required for the bile acid and LFT blood tests?

Some labs require fasting, and others do not. Please follow the laboratory requirements for the test.

Why does the bile acid test results take up to 5 – 7 days to receive in the USA?

There are only a few labs in the country who process that test. It is run in batches only 2-3 times per week. The test itself takes 24 hours to run.

My Liver Function Test ALT and/or AST are elevated?

My bile acids are normal.
ALT and AST may rise before or after bile acids. The ALT is the key indicator. Liver enzymes are only elevated in 60% of women with Intrahepatic Cholestasis of Pregnancy, and when they are elevated it can be before Bile Acids are elevated or after. Alanine aminotransferase (ALT) is the most sensitive of the conventional liver tests for diagnosis of ICP in the presence of itching without a rash.

My bile acid blood tests are normal with treatment of the medicine Urso– Should I still be delivered early?

Early delivery is part of the active management of ICP due to the risks. The risks to the baby rises dramatically in the last few weeks of pregnancy with ICP. If the itch continues and blood work is normal because of the medicine Ursodeoxycholic Acid (Urso) to treat ICP was prescribed; the following needs to be taken into consideration. The bile acid test results take several days to receive from most labs. Both the patient and healthcare provider need to make a decision based on the particular ICP case & factors. Bile acids are subject to increases and fluctuations. In most cases, delivery will occur at 36-37+0 weeks gestation as recommended by the (American College of Obstetrics and Gynecology) recommended delivery at 36+0 to 39+0, by committee opinion published in February, 2019 (Revised Feb 2021. In some cases, when Intrahepatic Cholestasis of Pregnancy is not well-controlled, providers may choose to deliver even earlier such as women with bile acids of 100 μmol/L.

Intraheptic Cholestasis of Pregnancy Treatment

How is Intrahepatic Cholestasis of Pregnancy (ICP) treated?

The medication UDCA-Ursodeoxycholic acid is one of the most important treatments for ICP. UDCA has been shown in meta-analysis to lower fetal risk. It helps to lower the Bile acid, helps to reduce symptoms and most importantly improves bile salt export from the liver and theoretically reduces the risk to the baby. It is an FDA pregnancy category B medication that is not expected to be harmful to an unborn baby. Please review the Treatment page to review the complete list of management & treatments for ICP cases in USA by Maternal Fetal Medicine specialist.

Why am I still itchy after starting the medicine Urso?

Urso will diminish the itching for some, however not every woman. It can take up to two weeks to notice relief when it does help with the itch. This is because the Urso lowers bile acids, which is important to protect the baby, but the itching is caused by another chemical called lysophosphatidic acid. This is the reason itch does not necessarily correlate with the bile acid level results.

Why does my baby have to be delivered early?

Research indicates that preterm birth by week 37+0 reduces the risks associated with ICP. The most concerning risk is stillbirth. It is not known why stillbirth in ICP tends to occur in the last few weeks of pregnancy. To reduce the risks associated with ICP, healthcare specialists consider the benefits of delivery by 37+0 weeks may outweigh the risks associated with early delivery. Please refer to the Metropolitan ICP Protocol

What is at risk to the baby with Intrahepatic Cholestasis of Pregnancy?

ICP poses several risks that are of great concern. ICP is associated with an increased risk of stillbirth (intrauterine fetal death), meconium staining in utero, spontaneous premature labor, fetal distress, and respiratory issues for the baby. The risk of stillbirth in an ICP pregnancy is believed to be the same as that of a pregnancy with no complications (1%) with active management (prescribed medicine treatment-UDCA Ursodeoxycholic acid, and choosing to deliver early). In addition, most doctors chose to monitor women closely and deliver the babies early in order to minimize the risk.

What is risk to the Mother with Intrahepatic Cholestasis of Pregnancy?

Cholestasis patients have a reduced ability to absorb fat-soluble vitamins (A, D and K). This may lead to Vitamin K deficiency. There is a risk of maternal postpartum hemorrhage. Therefore, healthcare professional prescribe oral Vitamin K. There have been reports of maternal hemorrhage as well as stillbirth in utero and postpartum due to ICP induced Vitamin K Deficiency. In the USA all babies born in hospitals receive a vitamin K shot at birth.

Why don’t antihistamines such as Benadryl work for the itching?

ICP itching is different than normal itching because the cause of the itching is internal, and more specifically, it is either directly or indirectly caused by bile salts in the bloodstream. “Normal” itching is caused by histamines and it can often be treated by topical lotions or antihistamines. Itching caused by ICP does not respond to either because of its internal nature.

I am expecting twins, is this more dangerous with ICP?

There is research showing that expecting more than one baby increases adverse outcome including stillbirth and preterm labor. Women carrying multiples appear to have a higher risk of developing ICP. Also, women with multiple pregnancies may have a higher risk of going into early spontaneous labor. Due to the increased risk of stillbirth earlier scheduled delivery may be considered. Note- Perinatal outcomes with intrahepatic cholestasis of pregnancy in twin pregnancies.

Is there anything else I can do?

Please note that these are tips that women who have experienced ICP found useful, however the treatment with the medicine UDCA-Ursodeoxycholic acid helps to improve and manage ICP, meanwhile the below are complimentary self-helps that may relieve discomforts from the itching. Eat healthy, drink plenty of water, wear cool & loose cotton clothing, keep temperatures low and maintain a low stress level. Some women have tried complementary medicines such as milk thistle and dandelion. However, it is important to discuss this with the healthcare provider. See treatments page for more information.

What happens after the birth of my child?

Will my baby have any long term health issues due to ICP?

There is no robust research to confirm ICP babies will have any long term health issues.

Will the itching go away after delivery?

There is still much to be learned about the exact causes of ICP and its manifestation. ICP is sometimes a result of an underlying liver disorder. It is normal for patients to continue itching for some time after delivery, particularly with cases that have been prolonged or in cases where a patient has had several pregnancies in a short time frame, however special attention should be given to patients whose itching intensifies after delivery or does not go away at all. Postpartum Serum Bile Acid and Liver Function blood test are suggested for ICP patients to ensure overall health. A differential diagnosis may include underlying genetic disorder or chronic liver disease such as Hepatitis C, anemia, Familial Intrahepatic Cholestasis, and bile duct obstruction and gall bladder disease. Other conditions that should be ruled out are infections with hepatitis A and B, cytomegalovirus, and Epstein-Barr virus, and autoimmune hepatitis. With regard to the latter, antimitochondrial antibodies can be obtained to rule out Primary bilary cholangitis (PBC), previously known as primary biliary cirrhosis and anti-smooth muscle antibodies to exclude autoimmune chronic active hepatitis. Appropriate imaging studies should also be done to rule out obstructive cholelithiasis.

Do I need to have my liver checked by a specialist after my baby is born?

Postpartum Serum Bile Acid and Liver Function blood test are suggested for ICP patients to ensure overall health at 3-6 months postpartum. Sometimes there may be an underlying liver condition that has caused the itching and abnormal liver levels during your pregnancy. If the results still show elevated ALT/AST or bile acid levels, these blood test should be repeated. If, after 6 months your results are still not improving an appointment with a healthcare provider or referral to a specialist called a Hepatologist experienced and qualified type of doctor to treat people with liver disease. Another specialist called a Gastroenterologist has completed specialty training in the treatment of disorders of the liver and other digestive disorders. It is possible there may be another liver condition. Another possibility is the liver just taking time to settle back to normal. This has occurred with women that experience ICP.

Can I breastfeed my baby after Intrahepatic Cholestasis of Pregnancy?

Absolutely! Breastfeeding is completely safe and normal after ICP. Some doctors may suggest for their patients to continue their prescription of UDCA –Ursodeoxycholic Acid to help normalize bile acids in the blood after pregnancy. The medication may pass into the breast milk, but may help the baby’s immature liver to rid their own body of residual bile acids as well as help with jaundice.

Should I have my gallbladder removed and are gallstones common with ICP?

There is no cure for ICP. Unfortunately for women who experience ICP, a cholecystectomy will not cure cholestasis of pregnancy. For most women, there are no changes in the intensity of itching after a removal. Those that experience ICP have a greater incidence of gallstones, often creating the need for gallbladder removal, but the process itself is not a cure. Also, generally this does not have an effect on the severity of disease. Many women have had their gallbladders removed in between pregnancies and have seen no direct correlation between the gall bladder and the symptoms of ICP. Note that women with ICP have a greater chance of developing a health issue with the gallbladder at a later time in life.

Will I get Intrahepatic Cholestasis of Pregnancy (ICP) again?

Reported recurrence rates vary with some researchers stating up to 70%, however it may be as high as 90%. It is known that women who have ICP in one pregnancy are very likely to develop it again in a subsequent pregnancy. Since recurrence rates are high for ICP, specialists recommend a baseline bile acid and LFT blood test along with repeat tests if symptoms occur. Also specialist recommend close monitoring for symptoms throughout pregnancy.

Will Intrahepatic Cholestasis of Pregnancy be worse in my next pregnancy or can I prevent it in my next pregnancy?

There is no research to show it will be worse in subsequent pregnancies or that it can be prevented. In some subsequent pregnancies symptoms may be noticed sooner such as the itch. Every ICP case and pregnancy is quite different and symptoms may vary. Some women have mentioned milder symptoms started later in subsequent pregnancies compared to their first pregnancy. Please also keep in mind that there is a chance to not develop ICP at all in a subsequent pregnancy! Some itchymoms had it skip a pregnancy!

What is the recommendation for second, third, etc pregnancies? Should I be tested before symptoms?

Healthcare providers do a baseline test early on in pregnancy. There is currently no firm recommendation on this, however some healthcare providers do, while others do not test until symptoms show. It may be a good idea to request a test in your second trimester to check your Bile acid and Liver functions.

Am I more likely to get ICP if I am expecting a boy or a girl?

If you expecting a boy or a girl there is no evidence to suggest that you are more likely to develop ICP.

Will my baby inherit Intrahepatic Cholestasis of Pregnancy (ICP)?

Whether expecting a boy or girl, there is a chance that the baby will inherit the genetic susceptibility. For a baby girl she is more likely to develop the condition if she decides to have children of her own. ICP run in families as it has been seen that Mothers and daughters (aunts and sisters) of affected women have approximately a fifteen times higher chance of developing ICP. For a baby boy although his health is unlikely to be affected, he could pass this on to his children.

What contraception can I use after my Intrahepatic Cholestasis of Pregnancy?

The only methods of contraception that may cause problems for women who have experienced ICP are those containing hormones. However, there have been no large studies regarding the use of contraception following an ICP pregnancy. Discuss contraception options with your healthcare provider about the mini pill or oral contraceptive pill, Intra-uterine devices, hormonal form of contraception that bypasses the liver, such as the Mirena. The copper IUD hormone free IUD called Paragard many women with ICP have said their healthcare providers recommend over the others. Also women with ICP have said Paragard has worked for them. If the pill is the chosen option, it is important to make sure to have a liver function blood test before starting. A Liver Function Test should be checked again approximately six weeks after. If an itch begins after taking the pill consult with a healthcare provider. However, keep in mind the itching shouldn’t be confused with cyclical itching which occurs during the menstrual cycle.

Why do I get occasional itching around my menstrual cycle?

Many that have experienced ICP have noticed itching called cyclical which occurs during ovulation or the start of menstruation. The itching is noticeable, however not similar to the ICP pregnancy itch that disturbs sleep. It is not known why this happens after having ICP, however it is may be that the liver is left sensitive to hormone fluctuations that occur during the menstrual cycle. Request from a healthcare provider to have a Bile Acid and Liver Function blood test to ensure your levels are normal.