As Intrahepatic Cholestasis of Pregnancy (ICP) Awareness month comes to a close, we would like to share Michelle Stephen’s personal story about ICP…
“A year ago, at 6:15, I felt the world was crumbling down because I was afraid to lose my baby.
I was afraid to lose him since the moment we knew baby was in my womb.
To begin with, Robert and I didn’t know what was happening. We went to a clinic to have a pregnancy test taken, which came back positive. However, the doctor thought I had an ectopic pregnancy because I was bleeding. I was asked to come back in the following days to have blood tests done to check for my HGC hormone levels. This hormone normally doubles every day during pregnancy. A couple days after my last blood work, the doctor from the clinic gave us a call and asked us to go to the ER to get an ultrasound and see what was happening because the hormone wasn’t going up as expected. Ectopic pregnancies are very risky. That day, my husband had to go to work, so his parents came from Michigan to be with us in the hospital.
After a long wait, when I finally had the ultrasound taken, it was possible to see a flickering on the screen. It was our baby’s heart! We knew then that Robbie had been alive for 8 weeks. Even though he was where he was supposed to be in my uterus, I was diagnosed with a sub chorionic hematoma. They thought this was going to be the cause of miscarriage. They explained to us that it didn’t matter what I did, or what I stopped doing, it was likely to happen and it was not going to be my fault. There was nothing to do, but to wait. It was the early hours of the next day and it was time to go home. We were walking through a very long hall. My mother in law, Julie, was reading the discharge documents. Then she asks me if I was told that baby’s heartbeat was 176 beats per minute. It was then when I realized how much I loved him and I started crying! I didn’t want to lose my baby!
That night, Robert and I went to bed, we hugged each other and put our hands on my belly. We cried until we fell asleep.
The days went by, and I would tell baby with a huge pain in my heart that I would totally understand if he had to go, that we already loved him with all of our being. But if he chose to stay, to hold on hard, very hard, to be able to keep growing.
We had more than a couple of scares. Four weeks later, when Robbie was 12 weeks, we went to a medical Center to get another ultrasound. The sub chorionic hematoma was smaller, which meant it was dissolving! Also, baby was growing perfectly! The following weeks were easy. We’d see my belly grow, and we decided to share the news!
At the beginning of December, one day I started feeling really itchy in different parts of my body. That night was hard to fall asleep because I just wanted to scratch and scratch myself. My husband and I thought it was due to weather change, dry skin, and so on. The next morning, I had a regular checkup appointment with my OBGYN. She was about to leave the room when I mentioned this itchiness to her, and that I had even enjoyed to scrub my face that morning when I took a shower. She asked me if my feet soles and hand palms were itchy. I said no. She grabbed her laptop and ordered some lab tests and asked me to go to the lab afterwards. We asked about them, and she said not to worry until it was actually a problem; she thought it was nothing serious. Of course, after hearing this we felt worried. That night I started putting more lotion on my body. We actually thought my itchiness was due to dry skin, because it would stop.
Next week, my OBGYN gives me a call. Robert was working. It was a Friday. My memory of finding out I indeed had ICP was as if it hadn’t been me the one who picked up the phone. As if I was looking at me from outside the window, not being able to hear and understand what the doctor was talking about. Just words: I’m sorry, cholestasis, high risk, tests, early induction, monitoring, ultrasounds, growth… she gave us an appointment for the next week to talk to us. Having gone to google didn’t help; nor being alone.
When I started treatment I felt more secure, and Robbie kept growing as he should have. By the end of January, we decided to find out the sex of our baby during a growth scan, and that’s when we found out baby was a boy! Everything was going well. Intrahepatic Cholestasis of Pregnancy (ICP) is a liver condition that leads to elevated bile acids in the blood and poses risks to the unborn baby. The first and sometimes only symptom is itchiness. The treatment for ICP is Ursodeoxcycholic acid and early delivery. What’s the cure? Giving birth.
The following weeks I had more frequent checkups with my OBGYN. After week 32 I would have Non-Stress Tests twice a week at the hospital. NSTs help monitor baby’s heartbeat, movement, and to see if I had any contractions.
We came home after the fourth scan at 33 weeks. Robbie was doing well, and everything was going as expected.
The next morning, on March 3rd 2017, at 6:15 I woke up because I felt something was going on. My water had broken. I was so worried and distressed. I woke Robert up. He was so sleepy because he’d gone late to bed. He took Charlie, our dog, on a quick walk while I was getting changed. I tried calling the clinic emergency number. We decided to take off to the hospital.
The way to the hospital felt like ages. Feeling as I was losing more amniotic liquid. We get there, we sign up, then triage. Doctor tells me I have contractions and I’m 2cm dilated. He adds that I needed steroids injection to help baby’s lungs mature. He hoped for at least 24hrs more for baby to be in my womb, because that’s what it takes for the injection to work.
We then were in a room. After monitoring, contractions, epidural, and two pushes, Robbie came to this world at 19:58. He was crying, God bless. In the room there were around 15 people.
They were ready to act since nobody had a clue of what Robbie was going to need. Thank God he didn’t need all of them. We had skin to skin for a little bit, and then he was taken to the Neonatal Intensive Care Unit. He spent 9 days in the NICU, progressing little by little, and achieving his goals! He was released on March 12, and we brought him home for the first time. Those were the longest 9 days of my life.
Intrahepatic Cholestasis of Pregnancy is a disorder not well known, and it’s also rare. I am now a volunteer for the 501(c)(3) nonprofit ICP Care. I help moms understand what they’re going through. In our Facebook group we offer support and we’re there for other moms. I’m just trying to offer a hand just the way I had one when I needed it.
Robbie and I were the luckiest to have an OBGYN who knew about cholestasis of pregnancy. Not every mom is as lucky as we were.”
Our thanks to Michelle and everyone at ICP Care for all of their hard work to help raise awareness and educate women about ICP. To learn more about ICP, please visit icpcare.org.