ICP Care Ambassador
My name is Justina Guarino. I am 32 years old, born and raised in Connecticut. I am a wife and mother of 2 girls.
In 2020, my husband and I became pregnant with our first child. This pregnancy was difficult because I had severe hyperemesis but despite that our daughter was growing beautifully. However, at 33 weeks I woke up with extreme itching on the soles of my feet, the palms of my hands, and stomach. I knew something was not right and my husband advised me to call my OBGYNs office. I called my OBGYNs office and explained to them my symptoms. The nurse asked that I immediately go to the lab to get my blood drawn as they wanted to test my Bile Acids, ALT, and AST. I asked the nurse why they specifically wanted those labs done and she said that they were concerned that I have Intrahepatic Cholestasis of Pregnancy (ICP). I never heard of Cholestasis of Pregnancy and had no idea what it even was. My doctor called me telling me that my results came back. My Bile Acids were elevated, and I had Cholestasis in Pregnancy. She explained to me what Cholestasis was and the words such as stillbirth, high risk, early delivery, and respiratory distress. I remember tears just running down my face and being so afraid. She told me I would be getting induced at 37 weeks and that I would need to take a medication called Ursodiol and start NSTs and BPPs twice a week. I was a mess, and I was afraid for our baby girl and myself. I was induced at 37 weeks which was Monday, September 7th, 2020. Coincidentally, it was Labor Day, so it was the perfect day to get induced and start the process. I was in labor for a total of 37 hours and gave birth to a perfect healthy baby girl on Tuesday, September 8th, 2020.
When I found out I had ICP in my first pregnancy I went to Google and started researching everything on Intrahepatic Cholestasis of Pregnancy (ICP). I came across ICP Care and was introduced to educational resources and support from other moms who had the same condition in pregnancy. I felt seen, I felt heard, and I didn’t feel alone. After I had our first daughter, I started to dig more into ICP because having this condition in pregnancy brought on so much anxiety. I didn’t know anything about this condition in pregnancy or the fact that my symptoms would go away after I delivered. I would go on the ICP Care website weekly. I started learning more about the condition, I started to educate my medical team, my husband, my family, and friends and myself. I joined the ICP Care support groups and heard other ICP stories from other moms who went through this. I started sharing my story about my first pregnancy with ICP on social media and had friends reach out to me saying because I shared my story it alerted them, a family member or friend to call their OBGYN.
In September of 2022, my husband and I found out we were pregnant with our second baby girl! This pregnancy was so much different than my first. I changed OBGYN practices and had a team of wonderful medical professionals, I had the resources and support from ICP Care, I didn’t have hyperemesis; we weren’t in the middle of a global pandemic, and I was feeling really good. I knew there was an high chance of developing ICP again since this was my second pregnancy but there was also a 10-20% chance of me not having it. At 21 weeks, I started having minimal itching and monitored it for a few days. Since this was my second ICP pregnancy I knew it wasn’t dry skin. I knew it was ICP coming back and much earlier into this pregnancy. I called my OBGYN, and they told me to come into the office. I went into the office, and we came up with a gameplan. I left the office and went directly to get my Bile Acids, ALT and AST drawn. My Bile Acids came back and were elevated. My doctors called me and discussed that they would be putting me back on Ursodiol and sending me to be seen by a Maternal Fetal Medicine (MFM) to discuss further. Luckily, I was able to be matched with an MFM who specialized and knew about
Intrahepatic Cholestasis of Pregnancy. We went through all my previous bloodwork, family history, etc. She believes that I got Intrahepatic Cholestasis of Pregnancy in both of my pregnancies due an excess number of hormones in body and possibly have a hormonal imbalance. I shared with her the resources and education I knew about ICP and the ICP Care website. My medical team wanted me to get my Bile Acids, AST and ALT done weekly to monitor my levels. In this pregnancy my Bile Acids ranged from 3-90. In addition, I was getting NSTs and BPPs twice a week with MFM. We had to go to the hospital and be elevated by labor and delivery a few times due to a few complications. A doctor who was on the floor came in to see us. She told me that I was a medical mystery because all my bloodwork was normal, but my Bile Acids were elevated. She went on to say that she never met a patient with Intrahepatic Cholestasis of Pregnancy. I immediately started to educate her on the condition and shared the ICP Care website with her. I asked her to please educate herself before she tells another expectant mom that she is a medical mystery.
At 37 weeks and after 32 hours of labor we welcomed our second ICP daughter. She arrived on Sunday, May 14th, 2023, and it truly was the best Mother’s Day gift.
My pregnancy journey may be over, but my ICP Care journey is just beginning. I will continue to fight. I will continue to advocate, educate, and research this unknown condition in pregnancy and help other moms. I am so grateful for ICP Care and all the resources that they have provided to me in both of my pregnancies. Both of my ICP babies were worth every single itch and there is something truly so special about ICP babies. Always remember you may be a patient but please never STOP advocating for you and your baby. You are not alone! xo