Intrahepatic Cholestasis of Pregnancy (ICP) & My Gentle, Family-Centered Preemie C-section

I had a typical, healthy pregnancy with my daughter, Priya, until I didn’t. Late in my pregnancy, I became very itchy, my urine was dark in color, I was overly tired and frequently nauseous. I had lamented to friends and family about how I was feeling but was typically met with well-meaning encouragement. I heard things like, “You’re pregnant and chasing a toddler around; of course you are tired!” or, “It’s common to experience itchiness and nausea in your third trimester.” Yet, I could not shake this feeling that something was off.

I started to research my symptoms and came across something called Intrahepatic Cholestasis of Pregnancy (ICP). As I quickly scanned the information, I knew in my heart I had this condition. As I read more, my worry began to increase. The treatment for this condition is to be on a medication that keeps your elevated bile acid levels from harming your baby, accompanied by frequent NST and ultrasounds to monitor the baby, and finally a delivery no later then 38 weeks, my worry grew because I was already over 35 weeks, and when left untreated, the complications can be serious and delivering past 38 weeks has a stillborn rate of 15 percent. Thankfully, I have a provider who excels at really listening to their patients, and when I called with my concerns, they saw me immediately. When I brought this up to him, he ordered the blood test and said they would call with results.

At 35w6d I laid down for bed. Anxious thoughts about receiving my test results the next day filled my head when I realized my baby was quiet. Where the usual kicks and tumbles that kept me up for an hour at bed time every single night, I was met with stillness. I did all the tricks to try and provoke some movement…nothing. Because we were waiting on the results of the blood test, and knowing what complications could arise with this condition, I didn’t want to take any chances, so we headed into Labor & Delivery.

Thankfully, our baby was looking great on the monitors, but right before being discharged by a nurse, my OB caught that the test results had come in. He told me what I had already known in my gut. That my bile acid levels were elevated above 10, which indicated a diagnosis of Cholestasis and that he would need to admit me and deliver her within 12 hours. He said waiting another week when we have had no treatment on board was not safe for her any longer and that she needed out very soon. Thankfully, the whole week I was waiting on my test results I had prepared myself for this scenario and even told my husband on the way to L&D that “I think we are having this baby in the next 24 hours.” So the shock I experienced was minimal.

Because of my previous emergency C-sections, her decreased movements, and the fact that my body had been essentially slowly poisoning her, we opted for a gentle cesarean instead of inducing labor to decrease the amount of stress she would experience during birth.

I have to admit, I mourned the birth I had been preparing and longed for. I had chosen a doula and had put in all the leg work to have my VBAC but sometimes birth plans and birthing your baby safely are not the same thing. Once I knew I would not get my VBAC, I was clear about my desire for a gentle cesarean. My provider explained that a cesarean with a preemie is unpredictable, but as long as she was doing well once she was earthside, my requests would be honored.

My birth plan requested the following:

• I did not want any medication that would make me drowsy for my birth.
• I wanted the radio on to help relax me while in the OR.
• I did not want any drape. I wanted to see my daughter being brought into the world. (This request was met with the exception of needing an air-filled warmer for her on top of us.)
• As long as she was breathing well on her own, I wanted skin to skin immediately in the OR.
• I wanted delayed cord clamping so she could receive her own vital stem cells, red blood cells, iron, and regain her full blood volume.
• I requested that she not be bathed at all but that the vernix should be rubbed in to aide in moisturizing her skin and help protect against infection.
• I wanted my catheter and IVs be removed as soon as possible.
• I requested breastfeeding-safe medication.
• I wanted the support of a lactation team to help me with the learning curve of breastfeeding a preemie and that she would also be evaluated for a lip and tongue tie.

My birth with Priya taught me three important things: First, to always trust your gut. When something feels off to you, listen to your body. Trust your God-given mama instincts. NO ONE knows your body and your baby better then you. Second, find a provider that supports you. Having a birth care provider who listens to you and supports you fully, even during less than ideal birth circumstances like this, makes all the difference in the world. Third, even if you have a less than ideal birth (like my four weeks early, emergent C-section), you can still have a birth that is a healing experience if you feel heard, understood, and your wishes have been respected. Though my story did not look the way I thought it would, I walked away from my less than ideal birth feeling at peace because my providers did everything in their power to give me the birthing experience I desired, and for that I am forever thankful.

If you or someone you know is experiencing itchiness while pregnant, please talk to your provider. Cholestasis of pregnancy, when treated correctly, almost always leads to healthy babies; but when left untreated, it can have devastating consequences. If you feel you are not receiving proper care or support or would like to be informed about this condition, please check this group for the most updated evidence-based research. This is a foundation that brings awareness and proper information to women dealing with this.

Experience and photographs submitted by Emily Russo.