June is Intrahepatic Cholestasis of Pregnancy (ICP) awareness month and is celebrated in memory of each baby lost to ICP. Cholestasis of Pregnancy is a liver disorder that only occurs during pregnancy and is characterized by elevated bile acids in the mother’s blood. ICP slows the flow of bile acid which leads to acid build up in the liver. Eventually, these acids turn into bile salts which then flow out into the mother’s bloodstream, through the placenta into the baby’s amniotic fluid. If left untreated, ICP can pose serious risks to the unborn baby.

Donna Benavides, founder of ICP Care, lost her first-born son, Jorden, to ICP twenty years ago. He passed away during her 37th week of pregnancy on June 10, 2003. Donna shares her story here:

“My journey through ICP began with my first pregnancy in 2003, with my son, Jorden. I had been grateful for my health all my life, but towards the end of my pregnancy, something was wrong – I started feeling itchy. At 32 weeks pregnant, I had itchy hands and feet, then the next week it spread to my arms and eventually, my entire body was itchy. Two-weeks later, at 34-weeks, I brought the bothersome itch up with one of my obstetricians, who suggested hydrocortisone cream. Unfortunately, the cream had no alleviating effects for me; my itching persisted.

During my 35-week appointment, I spoke to another obstetrician who ordered bile acid and liver function tests. She told me she suspected ICP, but I had never heard of it. The trusty pregnancy book that I read from cover to cover didn’t mention ICP and my friends and family had no idea what it was either. At my 36-week appointment, my husband joined me and after enduring another week of itching, which intensified at night, I was diagnosed with severe bile acids over 100 µmol/L.

For most, moderate to severe itching is the only symptom of ICP. Other symptoms include:

Pain in the upper-right quadrant
Dark urine
Light-colored stool
Malaise
Jaundice (very uncommon)

My doctor scheduled non-stress-tests (NST) twice a week and induction by week 38. She did not prescribe Ursodiol, a medication used to reduce toxic bile acids, and which helped me during my later pregnancies. I was already confused and scared as a first-time mom, but now I was faced with a high-risk pregnancy.

Researching ICP online, I read that there was only a 1% chance of losing my baby due to ICP. My husband continued reassuring me that everything would be alright and I was reassured by my overall good health, my upcoming induction and my optimism.

On the evening Jorden passed away, I woke up at two in the morning to him moving more actively than usual. I knew he was uncomfortable, but I was unaware that changes to your baby’s normal movements in utero can be a sign of distress. In fact, this was the day after my reactive non-stress test and just two days before my induction.

Based on my research and the past experiences and expertise of my doctors, I was convinced that continued monitoring and early delivery meant that my son would be safe. I soon learned the untimely truth that many itchy moms still face to this day – some healthcare providers are not fully educated or aware of ICP and the proper treatment and management of it.”

Potential risks and complications for babies in ICP pregnancies include:

stillbirth (intrauterine fetal demise)
premature labor
respiratory distress in the neonate
meconium staining
preeclampsia
gestational diabetes

“After the heartbreaking loss of our son Jorden, I joined an online support group for Mom’s affected by ICP which provided me with comfort and reassurance. While the risk for ICP recurrence is about 90%, it didn’t stop me from having a family. Six months later, my prayers were answered when I became pregnant with our second son, Branden, born in 2004. My new healthcare team specialized in high-risk pregnancies and when I was diagnosed with ICP for the second time, I was prescribed Ursodiol and scheduled for delivery, by induction at 35+ weeks. Subsequently, my blessings continued in 2006 with my surprise baby, Evan – and, just like before – I was diagnosed with ICP at 33 weeks pregnant. Thanks to my excellent medical team, who provided the best management, treatment and care, I will forever be able to remember the joy of bringing my sweet boys home; they are memories I hold dear to my heart.

There is currently no cure for ICP and women with the disease require active management and monitoring to lower the risk of complications to the unborn baby. I feel blessed and truly cherish the special moments shared with my three sons – they have brought peace and joy to my life. In support of other moms with an ICP diagnosis, I founded ICP Care to provide patient support and education, raise public awareness, advance research and improve health care practices for ICP patients. In 2023, we launched the ICP Patient Registry to help to drive research to improve understanding and the treatment of the disease.”

June is ICP Awareness Month. To learn more about ICP or to find support, visit liverfoundation.org or icpcare.org.

Support for Mothers affected by ICP