ICP: My story

Itching: it's not an uncommon complaint among pregnant women. But intense itching is not normal. What could be considered intense itching? If you're bleeding from the scratching, losing sleep because the itch is so bad, and you would sell your soul to the devil if it meant relief from the itch, then you've got a problem.

I had this itch, and it is called Intraheptic Cholestasis of Pregnancy. This is my story.

I grew up hearing my mom describe horrible itching that she had while she was pregnant. She had it the worst with me, incidentally. Her doctors never could figure out what it was--they knew it was related to the liver, but not much more. My grandmother itched too. We figured that for whatever reason, the women in our family just itched while they were pregnant. 

Fast forward to early in my pregnancy with Kate. We were at a birthday celebration for a family friend, and my mom was chatting with a practicing OB/GYN. She described the itching she had while pregnant, and the OB/GYN said, "There's a name for it now; it's called cholestasis of pregnancy. It's partially genetic, so don't be surprised if your daughter develops it."

My pregnancy was very normal. I didn't get too sick and I only gained about 25 pounds. Sure, heartburn plagued my life, but it wasn't anything out of the ordinary. I figured that since I didn't have my mother's endometriosis, I wouldn't get her cholestasis. 

A week before the itching made its evil debut...

Then at 32 weeks (the night before my brother-in-law's mission farewell) I started itching. Not just any itch, but itching on the palms of my hands and the bottoms of my feet (and everywhere else). This was the telltale symptom of cholestasis. I couldn't sleep all that night, I was so miserable. 

We were late to the mission farewell because we overslept (because I had a horrible time falling asleep). When sacrament meeting was over, my mother-in-law (a nurse, and she knew about my mother's history with cholestasis) found us and noticed how miserable I looked. I told her about the itching and she urged me to get tested.

The itching disappeared the next day, and I boiled it down to stress and just another pregnancy complaint. I went three weeks without symptoms.

Then at 35 weeks, the itching reared its ugly head again, and nothing I did helped it. I knew that this was cholestasis, and I needed to bring it up with my midwives. Stephan was in denial; he kept saying that it must be the dry weather (that winter was unseasonably dry) or I must be allergic to something. I told him that I was going to get tested and there was no harm in finding out what was going on.

I was prepared to fight for a diagnosis. Not very many healthcare providers are familiar with ICP, and I had read many stories online of women whose doctors didn't take them seriously and they had to fight for a diagnosis. Luckily, when I described my symptoms to the midwife at a prenatal visit, she took me very seriously. She ordered a Liver Function Test and Bile Acid Test right then and there, prescribed Ursodiol, and told me to be prepared for a 36-week induction. 

Stephan made the mistake of doing an online search of cholestasis on his phone while I was getting my blood drawn for the tests. Needless to say, he was traumatized by what he found out. Me? I was grateful I was being taken seriously, and I felt the peaceful assurance that everything was going to be fine, and Kate would be all right.

The next day, my midwife called me. My liver function had come back, and my levels were elevated, which meant that there was a high chance that I had ICP. My bile acids test wouldn't be ready until Monday, and we made an appointment so I could come in and find out. She added, "Pack your bags and be ready to be induced that night, if necessary."

That weekend was very long and intense with waiting. We tried to keep busy by buying some baby items, going on an early Valentine's date (since there was a chance I would be in the hospital on Valentine's Day), watching movies, and spending time with family. 

Monday finally came. Stephan got someone to cover his shift at the Math Lab so he could be at the appointment with me. We packed our bags (since we were told to prepare for an induction) and headed to the midwives. We checked in, and waited for what seemed like an eternity.

Finally, the midwife came in. She had my results: I did indeed have cholestasis, but my numbers were low enough that we would wait another week to induce. In the meantime, twice weekly NSTs and once-weekly prenatal appointments were in order until the induction. 

We breathed a HUGE sigh of relief. I wasn't thrilled about being induced, but I was glad to know that the itch from hell (as I called it) would be ending soon. 

That week was spent getting everything together for Kate's arrival...and staying up late scratching myself silly and trying to relieve my suffering. I discovered an lotion called Sarna. Oh goodness, was it wonderful. Minty lotions helped too. I even tried peppermint oil, but then found out that it wasn't recommended for pregnancy (blast, because it worked so wonderfully). 

Then my induction day came. My labor was very long (30 hours), but brought a healthy baby Kate into the world. The nurses said she looked like she was on the early side, but she was very healthy and strong. My itching went away as soon as she was born.

About two months old here (give or take). She looks so skinny.

ICP can cause several complications: premature labor, meconium passage, fetal distress, maternal hemorrhage, even stillbirth. The risk of complication gets higher after 37 weeks, which is why induction is highly recommended by that point (if not sooner). I am grateful everyday for my sweet baby girl, and that no harm ever came to her. I know that not every ICP mom is so lucky.

I share my story so I can increase awareness of this disorder. Not very many people know about it, and 1 to 2 pregnancies in 1000 are affected by it. I wouldn't be surprised if there are more, because it seems like everyone I've talked to knows someone who has had it. 

I am also sharing it for Kate. You see, I have a strong family history of ICP. My mom had it with three out of four of her pregnancies. We're certain my grandmother had it. Recently, we found out that my aunt had it as well. Kate may very well have gotten the gene, and I pray that one day, there might be a cure (or even better treatments at the least), so she doesn't have to suffer when she has her own babies (not for a very long time, of course...heh heh). 

Healthy, happy, and wanting to become mobile!

If you would like to learn more about ICP, please visit icpcare.org. I will write more about it, as time goes on. Feel free to ask questions, I will do my best to answer them. Remember, I am not an expert, just an "itchy mom" who wants to increase awareness and knowledge of this condition :)