June 2015 is ICP Awareness Month. ICP stands for Intrahepatic Cholestasis of Pregnancy. It’s a rare and serious liver disorder that occurs during pregnancy. If untreated, it carries a 15 percent chance of stillbirth.
I was diagnosed with ICP when I was pregnant with Lily. To help spread awareness of this scary condition during ICP Awareness Month, here is my story.
When I was 37 weeks pregnant with Lily, I began to get really itchy. Not just mosquito-bite itchy. The kind of itchy where I wanted to claw my skin off. My arms, my belly, the palms of my hands, and the soles of my feet would go through bouts of sudden itching, with no accompanying rash. Since it happened to coincide with a particularly brutal heat wave in Southern California, I figured it was just late-pregnancy heat sensitivity.
On Friday, August 29, I went in for my last check-up before my C-section, which was scheduled for the following Friday. I hadn’t been itchy that morning and was feeling great. Consumed with excitement about my last week of pregnancy, I gave my doctor a big hug and told her I’d see her in the operating room in a week.
Later that morning, I took Matt and Nate to their My Gym class. I was standing with a couple of mom friends and, without realizing it, scratching my arms and palms. One of my friends asked if I was OK.
“Ya know, I’ve been really itchy lately. It must be some weird late-pregnancy symptom,” I said.
“Hmm…I never experienced that,” she replied.
My other friend hadn’t, either. That’s when I began to wonder if maybe something else was going on.
The rest of the day passed with the itching coming and going. We had a nice family dinner out, then went into the boys’ room to start their bedtime routine. As we sat on the floor and read books, my soles suddenly got so itchy that I had to stand up and start rubbing them on the carpet. Then my palms started to itch.
“You know, I’m gonna jump online and Google my itching,” I told Keith. “I just want to make sure this is a normal pregnancy symptom.”
Keith always discourages me from Googling symptoms because I can be a bit of a hypochondriac, but even he was curious about the itching. So as he finished putting the boys to bed, I went into the office and started to research.
What I read terrified me. It turned out that my itching was not a typical pregnancy symptom. It was, however, a major symptom of Intrahepatic Cholestasis of Pregnancy, which most often begins in the third trimester of pregnancy. Here is a list of the most common symptoms:
- Itching all over—often more severe on palms and soles—without a rash present. The itching can be constant or recurring and is often worse at night.
- Dark urine and/or pale stools
- Preterm labor
Other symptoms may include:
- Right upper quadrant pain
- Loss of appetite
- Mild depression
More About ICP
ICP affects the normal flow of bile. Bile acids are chemicals in the bile of the liver that help with digestion. With ICP the bile flow begins to slow down, causing the bile acids to build up in the blood. ICP is associated with an increased risk of stillbirth, preterm labor, fetal distress, respiratory distress, maternal hemorrhaging and meconium passage in utero.
But it’s very rare. Overall, ICP affects only 1 to 2 out of every 1,000 U.S. pregnancies. In the past, it was thought to be a benign condition. For those reasons, some health care providers are not fully aware of the possible risks ICP carries or of the most up-to-date treatments.
Proper treatment of ICP generally includes medication, weekly blood tests and monitoring, and delivery of the baby at 37 weeks gestation.
Once I showed Keith the information I’d found, he was concerned enough to place a call to my doctor, (who was, of course, heading out of town for the long Labor Day weekend). He left a message with the answering service and she called him back quickly. As soon as he told her my symptoms, she advised us to go into the hospital right away to get tested.
Of course, we lived thousands of miles away from family, but one of our wonderful friends (also a mom of young twins) was able to come over to stay with the boys. We headed to the hospital at around 10 pm to begin a long night of monitoring and testing.
I was hooked up to a fetal heart monitor to make sure Lily was OK. I got a special ultrasound. Most important, I got two important blood tests—a Fractionated Bile Acid Test and a Liver Function Test. The Bile Acid Test measures the level of bile acids in the blood, while the Liver Function Test measures liver enzymes.
When we got the results of my Liver Function Test a few hours later, they showed that my liver enzymes were, in fact, elevated. Unfortunately, the Bile Acid Test had to be sent to a lab and would take several days to come back, so they couldn’t definitively diagnose me with ICP.
We returned home around 2 am, exhausted and scared, with orders to closely monitor Lily’s kick counts and to return to the hospital on Sunday for the same round of monitoring and blood tests. We dropped the boys off at a friend’s house on Sunday and went back in. The fetal monitoring and ultrasound went well, but my liver enzymes were still elevated. Unfortunately, my bile acid results still had not come in.
That meant back to the hospital we went on Tuesday for more monitors and tests. At least my parents were in town by then to stay with the boys, but it wasn’t exactly how we’d envisioned the last week of pregnancy going.
I was at the beach with my family the next afternoon—two days before the scheduled C-section—when my doctor called to say my test results had finally come in: I did, indeed, have Intrahepatic Cholestasis of Pregnancy. I panicked, fully prepared to head right into the hospital to have Lily. But she had consulted with a maternal fetal medicine specialist, and they both felt that my bile acid levels were not high enough to require delivery right at that moment. They felt the benefits of carrying Lily the full 39 weeks outweighed the risks at that point.
Keith and I went in the next day for more monitoring, and all looked good. The next day—after a frightening and stressful week—I gave birth to a beautiful, healthy, 8 lb.-4 oz. baby girl.
As scary as our experience was, it was nothing compared to what most women with ICP go through. ICP is typically diagnosed earlier in the third trimester—sometimes even before that. That means most women with ICP experience weeks of intense itching (often to the point that it disrupts their sleep) and other symptoms, weekly blood tests, a huge amount of fear and stress, and an early delivery—and, in rare cases, worse.
I’m not trying to scare anyone unnecessarily, as itching during pregnancy is usually nothing to worry about. But if you are pregnant or planning to get pregnant, I urge you to read up on Intrahepatic Cholestasis of Pregnancy. If you experience intense itching with no rash present—especially if it’s on your palms and/or soles—call your doctor. Even if it turns out to be nothing, it’s better to be safe and get it checked out!