My experience with Intrahepatic Cholestasis of Pregnancy (ICP)

Close to the end of my pregnancy with Elisabeth, I was diagnosed with Intrahepatic Cholestasis of Pregnancy (ICP) or more commonly referred to as Cholestasis or Cholestasis of Pregnancy. June is recognized as Intrahepatic Cholestasis of Pregnancy month (everything has a month or day, right?) and I would like to help spread awareness by sharing my experience. 

I am choosing to share this experience because it was almost dismissed and as I have read about other people's experiences, I have learned that this condition is often overlooked and sometimes, tragically, too late. ICP is a condition that affects the liver during pregnancy where instead of bile being broken down in your liver it spills out into the blood stream, causing the most common symptom of itchiness. The most severe risks are those that can affect the baby such as the baby going into distress and breathing in meconium or being stillborn. Doctors told me that this was more likely to happen past the 37 week mark which is why they typically induce you at that time. 

My purpose for writing this is to spread awareness of this condition and encourage others to watch for signs of ICP in their pregnancy. Please share this blog post if you would like. If you experience any of these symptoms please talk to your Doctor,  OB or midwife about it and ask for a requisition to have your bile levels and liver function tests checked. I feel this is important because it is not part of the routine blood tests you get during your pregnancy. 

My story will share the symptoms I experienced but not everyone will have the same symptoms or experience. For more information on ICP, I would encourage you to visit the ICP Care website. 

 My pregnancy with Dominic was free of complications, I felt pretty good throughout the whole pregnancy, just uncomfortable at the end. My pregnancy with Elisabeth started out the same. No morning sickness and besides feeling more tired in the first trimester, I felt pretty good. In fact some people were convinced that I was having another boy because my pregnancy was so similar. 

At 30 weeks, I started feeling some pain in the upper right quadrant of my abdomen. I mentioned it to a few people, some of whom responded with, "oh, is baby in your ribs?" I thought it was probably due to the way she was positioned but I didn't feel her pushing against my ribs or anything so thought I should mention it at my next midwife appointment. 

At 32 weeks I mentioned the pain I felt to my midwife and said that, being short (in height), I thought maybe it was the way the baby was positioned. She said that upper quadrant pain on the right side could sometimes be an indicator of two more serious issues. One being preeclampsia but was quick to rule that out as my blood pressure had always been normal and I wasn't having headaches or blurred vision. The other being ICP.  She asked if I felt itchy and I said just on my belly which she said was normal, the itchiness to look out for was on the soles of your feet and palms of your hands. However, as she felt the baby's position, she said that maybe it was the way the baby was positioned. 

I hadn't heard of ICP so I decided to Google it, as I read about people loosing their babies to stillbirth I was relieved to think that I didn't have this condition. I didn't have the common risk factors associated with ICP: family history, prior liver condition and Chilean or Scandinavian ethnicity.  

A few days later I started feeling itchy on my hands and feet, arms and legs. The thought of ICP came to mind but then I wondered if I was feeling itchy because I was reading about it. I also thought that maybe the itchiness wasn't intense enough. Sometimes it was a mild itching but sometimes it was intense and I had difficulty sleeping. The pain also increased, with the worst pain being felt when driving. 

I went back and forth in my mind about whether to bring it up to my midwife again. I decided that I should ask for the requisition to get the blood work done, just to put my mind at ease. My next appointment was at 34 weeks, I left work, picked up Dominic from daycare and was on my way to my midwife appointment when I got a text message saying that my appointment was being canceled because one of my midwives was at a birth and the other on vacation. My house was on the way to the clinic so I stopped off at home and called the clinic to ask if there was another midwife I could see. At first I was told to expect that cancellations could happen and that I would be rescheduled for the following week. I persisted in asking if there was someone else available if I could just meet with them. I was told that she would find out and call me back. 

I got Dominic a snack and a few minutes later I got a call that another midwife could meet with me. I got to the appointment and the midwife spent the first 10 minutes lecturing me on needing to be more understanding about midwives taking vacation and going to births. I definitely know the importance of people needing to take vacation and that emergencies come up but I also feel that other patients needs should be accommodated and that the midwife on vacation should have someone cover for her. Anyways, I just responded that the reason I wanted to be seen was because I wanted a requisition to rule out ICP. 

When I told her that I was feeling itchy, she responded that it was winter. When I said that I had been experiencing the upper right quadrant pain for the past 4 weeks she asked if it ever went away and I mentioned that the pain often subsided when I was lying down. "So, it does go away" she responded. I asked again for the requisition, saying that I just needed to put my mind at ease. She left and came back with another midwife who went over my symptoms and agreed that a requisition would be a good idea. The second midwife also said that she was glad that I was able to get in. Two days later, I went to the lab to get the blood work done and urine sample. Maybe TMI but another symptom I had initially overlooked was that my urine had been very dark the past few weeks which I assumed was from the iron supplement I was taking. I drink a lot of water throughout the day so I knew that I wasn't dehydrated.

A few days later on February 5, at 35 +1 weeks pregnant I got a phone call from my midwife. I was at work, just about to eat lunch. When I saw that it was the midwife calling, I knew right away that she was calling to say that I had Cholestasis. The itching was getting more intense. I answered the phone and was told that my bile levels and liver function tests came back high and I was given the diagnosis of ICP. The midwife gave me the name of an OB that I would now be under the care of. She told me that I would likely be induced at 37 weeks and that the condition could cause stress on the baby. She then said that the Hospital had been notified and wanted me to go in right away. I felt like it was a lot of information to take in over the phone but at the same time was grateful that I could get this information right away. 

I called Kyle and told him what was happening, he came and met me at work and we went to the hospital. I was so worried about my little baby, still inside of me, not knowing what to expect. Kyle gave me a blessing of comfort in the parking garage of the hospital and then we went in. 

I was given a non-stress test, had my vitals checked, had blood taken and prescribed some medication to help bind the bile. I was told that I would probably be induced on February 17. In 13 days. Then I started making a mental list of all of the things I needed to do. Taxes, cleaning, packing the hospital bag for me and the baby, a bag for Dominic, finish work 2 weeks earlier than I had planned, etc. Dominic was born on his due date, I was expecting that Elisabeth would be as well.

About every 3 days for the next 13 days, I went to the hospital for a routine non-stress test, vital check and blood work. The baby's heart rate and my blood pressure was always good so that was reassuring. However, each time I went in I was told about the risks associated with cholestasis which included stillbirth. When you hear that as a risk, that is all you think about. When Elisabeth was 3 weeks old, my twin sister had a stillborn baby at 19 weeks and it is a devastating experience.   

Each time I went to the hospital there was a discussion about whether I might be induced earlier. We had also had a high risk ultrasound and OB appointment in that time. I felt very well taken care of and that everyone was being thorough in the work they did. At that point, I wasn't worried about the baby being born earlier, I just wanted her to be in my arms. I felt like she would be safer on the outside. I was constantly poking her to make sure that I could feel her move. 

I only went to the hospital twice during my pregnancy with Dominic, once to get a Rho-gram shot (I have a negative blood type and Kyle is positive) and then to deliver him. In my last two weeks of pregnancy with Elisabeth, I was becoming quite familiar and more comfortable with going to the hospital. Keep in mind, this was pre Covid-19 pandemic, it would probably have been more stressful during the pandemic. Elisabeth's due date was just two days before the pandemic was declared.

On Sunday, February 16, I was told that my induction was scheduled for 8:30 the next morning. I had been told that unless I was at least 3 cm, I would have to start with cervadil and come back 24 hours later. I was hoping to start labour on my own so I had a massage and on Sunday went for a long walk with Dominic. 

That night was the most intense itching I had experienced and I spent most of the night sitting at the kitchen table with my feet in a bucket of ice water. 

Monday, February 17 was Family Day in Alberta which sounded like a good day to have a baby. After dropping Dominic off at my friend/neighbours home (making sure to let her know that we would probably be back) we headed to the hospital. It was a typical freezing cold, snowy February in Edmonton. 

We checked in at the hospital and to my astonishment and relief, I was 3 cm dilated and was able to be admitted. I started on the Oxytocin at 10:30 am. It took awhile for labour to kick in. I applied for maternity leave and went for a couple of good naps while the nurses continued to increase the dose of Oxytocin. My biggest regret was only having a smoothie for breakfast as I wasn't allowed to eat anything after the induction started.

The baby's heartbeat was continuously monitored until she was born. It was good to always have the reassurance that she was doing well; although, it was hard to get up and move around. The Doctors and nurses were all very supportive in my desire to labour without any intervention. I didn't feel that support with Dominic which is why I was excited to be accepted by a midwife; however, I didn't really have a great experience with the midwife office I was with. 

Fast forward to 12:20 am on February 18, 2020, our Elisabeth Vita Carcerano was born. The first thing Kyle said was, "She's Italian!" - she had a pretty dark complexion and dark hair. Opposite to Dominic who was fair skinned and blond haired from birth. 

Elisabeth was perfectly healthy when she was born and we went home 14 hours later. For me, the itchiness lasted about two weeks after I gave birth. Not fun on top of postpartum recovery but we were both healthy and that was the most important thing to me. 

Elisabeth is 3 months old now and from the day she was born, she has always seemed like she is where she is supposed to be in terms of growth and development. She is typically a very content and interactive baby who sleeps well. Unfortunately due to the Covid-19 pandemic, no one on either side of our families have met her yet but we hope that they will be able to soon. 

I hope that by sharing my experience, others can have a positive outcome like we did.