My Life Changing Experience with Cholestasis of Pregnancy
Life Changing Cholestasis of Pregnancy Story

An Itchy Pregnancy can be a Symptom of a Serious High Risk Pregnancy Condition

I learned this through devastating consequences. My health was never an issue for me throughout my life; however that trend soon changed dramatically toward the end of my first pregnancy. At 32 weeks pregnant, I began to have itchy hands and feet, noticing the itch spreading after a week to my arms and eventually to an all over itch. I brought up the bothersome itch to one of my obstetricians that suggested hydrocortisone cream at my 34 week appointment. The cream did not work with the itching persisting; I spoke to the other OB, during my 35 week appointment. She ordered a bile acid and liver function blood test that day. Like most doctors, she tried to make me feel calm without having to concern me with the possible risks that came along with it. My doctor suspected Cholestasis of Pregnancy which was the first time I had ever heard of this pregnancy condition. My trusty pregnancy book that I read from cover to cover did not mention it. The friends and family I spoke to did not either. The next scheduled appointment at 36 weeks, my husband joined me; I was finally diagnosed after enduring another week of itching surfacing more intensely at night.

Intrahepatic Cholestasis of Pregnancy (ICP) slows the normal flow of bile out of the liver leading to the buildup of bile acids in the bloodstream. (Mayo Clinic, 2014) The elevated bile acids pose the following risk to the unborn baby; fetal distress & abnormal heart rhythm, meconium staining, respiratory issues, preterm labor and stillbirth (intrauterine fetal death). (Society for Maternal Fetal Medicine, 2014)

On that day, I had additional blood work drawn and a non-stress test. We asked the doctor a few questions and she reassured us by letting us know she had cared for other patients with ICP. The plan was set for twice a week non-stress-tests (NST) and I would be induced early by week 38. I was confused and scared this being my first pregnancy now facing this condition. At work on the internet, I read more about Cholestasis of Pregnancy and printed out some information to discuss with my husband, yet since the statistic on the article was only 1% chance of loss of the baby due to ICP, he wasn’t that worried. My instincts told me otherwise, however he also assured me that all would be alright. The day after my reactive non-stress test just two days away from being induced, we lost our son Jorden due to this deadly condition.

My initial research on the internet about this rare condition and my doctor’s past experience with ICP led me to believe monitoring and early delivery would mean my son would be safe. Soon I learned the truth many itchy moms face. There are many healthcare providers with some knowledge that may not be completely up to date with the proper treatment and management of ICP. The proper management includes the medicine called Ursodeoxycholic Acid, weekly blood test, monitoring and early delivery by week 37-38 or earlier.

During my subsequent pregnancies ICP reared its ugly head as the recurrence rate is as high as 90% for severe ICP cases such as mine. This time my doctor was a high risk pregnancy doctor Dr. Victor Gonzalez-Quintero a Maternal Fetal Medicine specialist, I was diagnosed earlier with my second and third son and they were born by week 36 via induction. Another important difference during my last two ICP pregnancies, was being prescribed the medicine ursodeoxycholic acid to help manage the bile acid levels. The total daily dose was increased by my doctor throughout my pregnancy. The medicine has protective qualities for the baby and makes the itching more tolerable. The fractionated bile acid and Liver function blood tests were checked bi-weekly as well as monitoring with Biophysical profiles. My happy and healthy boys are now ten and eight.

The life altering events that lead to the loss of my son Jorden is one I set out to help prevent for other women with ICP. I founded the ICP Care nonprofit organization with the mission to connect, support, educate and empower those affected by Cholestasis of Pregnancy. The website www.icpcare.org is a resource for those affected seeking research-based, medical referenced information. ICP Care is managed by dedicated women all affected by Cholestasis of Pregnancy. The ICP Care Facebook support group has members from the USA and around the world seeking support and guidance. The awareness of this condition is vital for the general public, patients and especially healthcare professionals. ICP Awareness strategies will continue and most exciting is assisting in funding research in the United States with leading ICP experts! Together we will all make a real difference with ICP.

Author: Donna Benavides is a mother of three and Founder of ICP Care.

References:

F. Rigby, MD, et al, 2014. “Intrahepatic Cholestasis of Pregnancy Medication.” https://emedicine.medscape.com/article/1562288-medication

Rigby, MD, et al, 2014. “Intrahepatic Cholestasis of Pregnancy Treatment & Management.” https://emedicine.medscape.com/article/1562288-treatment

Intrahepatic Cholestasis of Pregnancy Follow-up on Medscape https://emedicine.medscape.com/article/1562288-followup

J.K.Mays, MD, et al, 2011. “Induction of Labor at less than 38 weeks in Cholestasis of Pregnancy: A Six-Year Cohort.” https://www.ajog.org/article/S0002-9378(12)01420-2/fulltext

Mayo clinic symptoms of cholestasis http://www.mayoclinic.org/diseases-conditions/cholestasis-of-pregnancy/basics/symptoms/con-20032985

SMFM Understanding Intrahepatic Cholestasis of Pregnancy https://www.smfm.org/publications/96-understanding-intrahepatic-cholestasis-of-pregnancy

Intrahepatic Cholestasis of Pregnancy Overview on Medscape https://emedicine.medscape.com/article/1562288-overview

Y. Bacq, et al, 2012. “Efficacy of Ursodeoxycholic Acid in Treating Intrahepatic Cholestasis of Pregnancy: A Meta-analysis” https://www.gastrojournal.org/article/S0016-5085%2812%2901187-0/fulltext#acknowledgment

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.