Intrahepatic cholestasis of pregnancy (ICP), sometimes called cholestasis of pregnancy, is a liver condition triggered by pregnancy that affects one to two in 1,000 pregnant people. It’s unknown exactly what causes ICP, but it’s thought that the hormonal changes during pregnancy slow down the flow of bile, causing this fluid to build up in the liver. Eventually, bile salts spill out into the mother’s bloodstream and cross the placenta into the baby’s amniotic fluid.

The primary symptom of ICP is intense itching, often in the hands and feet. Many pregnant people experience this as their only physical symptom, though less common symptoms can include nausea, dark urine, light-colored stool, fatigue, changes in appetite and jaundice. Research suggests ICP most often affects pregnant individuals of Scandinavian, Indian, Pakistani or Chilean backgrounds.

ICP can be harmful to the mother but is arguably a more serious concern for the baby, leading to lung problems, preterm birth or even stillbirth.

Yet, despite its seriousness, many expectant people have never heard of ICP. This is something Laura Bonebrake, MD—an obstetrician-gynecologist and a mother who experienced ICP in all four of her pregnancies—wants to change. Here, Dr. Bonebrake shares her story with The Healthy @Reader’s Digest.

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Laura’s story

By Laura Bonebrake, MD, as told to Charlotte Hilton Andersen

Itching. It may not sound like a big deal at first. Sure, it’s annoying, as anyone who has ever had a mosquito bite can agree. But the kind of itching I experienced was so intense that I couldn’t sleep, had difficulty eating, and I looked like I’d been sunburned from rubbing my skin raw trying not to itch it with my fingernails. The worst part, though, was how consuming it felt.

Once the itching set in, usually in the evening, it was all I could think about for hours. “Don’t itch! I have to itch! Don’t do it, don’t give in! How am I going to handle this for months? I can’t not itch!! I CAN’T DO THIS!”

The insane itching was a symptom of a disorder called intrahepatic cholestasis of pregnancy (ICP). I experienced it during all four of my pregnancies.

(Got itchy skin and you’re not pregnant? Here’s what itching could be telling you about your health.)

From itch to diagnosis

In 2010, rare pregnancy conditions were just an academic concern for me. I was in my residency, studying to be an OB/GYN, while also pregnant with my first baby. It was busy, but everything was progressing well.

That is, until at 24 weeks along, I began to notice a strange itching sensation between my fingers. Over the next few days, the itch spread to my hands and feet. I’d read about ICP in my studies but I’d never seen a case. I’d learned that it’s usually diagnosed in the last trimester of pregnancy, so I wasn’t sure if that was my problem.

Yet all the symptoms fit. I requested a blood test to measure the bile acids in my blood. The test results came back positive. I was officially diagnosed with ICP.

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Dealing with an un-itchable itch

My doctors prescribed me Ursodiol, a medication that helped control the itchiness (although it didn’t eliminate it). I was able to continue my training and work during my whole pregnancy, but sometimes I would have an itching attack for no apparent reason. It usually came on about 5 p.m., and it felt like something was stuck between my fingers.

It would progress into an itching that would spread to other parts of my body. I would spend hours rubbing my hands and feet on the floor, the carpet, my pants, or whatever was close. I’d binge-watch TV to try and distract myself from the urges. Sometimes putting on menthol lotion relieved the itching for a time so I kept a bottle handy at all times, so much so that it became my “signature scent.”

(Check out these 8 trusted home remedies for itchy skin.)

Surviving four itchy pregnancies

ICP babies have a three times higher risk of lung problems and are more likely to be stillborn. As an ICP mom, this frightening possibility was often on my mind—so I was ecstatic when, at 36 weeks pregnant, my doctor induced labor. Seeing his heart rate on the monitor, I realized that I made it to the finish line and my baby was going to be safe!

It was such a relief when my first child was born via c-section, in 2011. He had respiratory distress syndrome and had to spend one week being treated in the the neonatal intensive care unit. After that, we were able to take him home. He was happy and healthy and he hasn’t suffered any problems from the ICP since.

We knew we wanted to have more children and with stillbirth a possibility, I tried everything I could to boost my liver health, including downing kale smoothies, sipping lemon water and eating a liver-healthy diet.

The disease recurs 60 to 90 percent of the time…so I was disappointed, but not terribly surprised, when the familiar sensation came back 16 weeks into my second pregnancy. Once again, I successfully managed the disease…and in 2014, my second son was born at 37 weeks. He had minimal complications and only had to spend four days in the NICU.

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In 2016, I got pregnant a third time. This time the itching started very early. I was officially diagnosed with severe ICP at eight weeks, one of the earliest cases ever recorded.

Through testing, we discovered that my bile levels were so high they were practically off the charts. These two factors combined increased the risks to my baby, making this pregnancy my most difficult one. We did weekly monitoring to make sure the baby was safe. At 35 weeks, after monitoring showed the baby’s heart rate dropping, they delivered my third child immediately. She spent four weeks in the NICU recovering and it was a very scary time for us.

Even after that, my husband and I conceived in 2018. The itching started even before I took the pregnancy test—in fact that’s how I knew I was pregnant—and I broke my own record, getting diagnosed at just five weeks pregnant. Thankfully this time the disease was relatively mild, and my fourth child was born at 36 weeks. She only had to spend five days in the NICU.

(Here are 9 more little body changes that could signal much bigger health problems.)

Don’t dismiss itching

Today, my kids are all healthy and happy. But it was such a scary and frustrating experience that I’ve made it my mission to raise awareness of ICP. There are some promising new treatments on the horizon, including volixibat, but women can only receive treatment if they get properly diagnosed. That’s why I’ve partnered with ICP Care, a non-profit that educates people on diagnosing and managing the disease. (The nonprofit organization was founded by another ICP mom, Donna Benavides, as an avenue for support and awareness after she tragically lost her son Jorden in 2003.) Itching during pregnancy is one of those symptoms that can be overlooked…but intense itching during pregnancy needs to be taken seriously.

For more information on ICP diagnosis, management, treatment, and outcomes, check out ICP Care.

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