I frequently wake up thinking of how lucky we were. Before my first pregnancy, I have never heard about Intrahepatic Cholestasis of Pregnancy. I did not know how common it is for pregnant women to hear that their itching is normal when it is not. I was told that too. In 2017, at 36 weeks and 3 days pregnant, I called the nurse because the palms of my hands and the soles of my feet were itchy. Now I know she should have told me to go to triage, they should have scheduled a non-stress test, and my bile acids should have been measured. But they told me wait, to not worry. During that weekend the itching extended to my body.
Fortunately, on Monday morning my doctor acted fast, she knew that my signs were typical of cholestasis of pregnancy and sent me to the delivery room without waiting for my lab results. That day, at 37 weeks I delivered a healthy baby boy that is 5 years old now. It was a week after my delivery, once my labs came back, that it was confirmed that my bile acids were indeed above the normal standards, and I was told that I could develop cholestasis in a second pregnancy. Two years after, I thought I was ready for a second baby, but my second pregnancy has harder than I expected.
Guadalupe Manrique Maldonado with her children
Here is what I learned:
1. Cholestasis of pregnancy is unpredictable and knowing that is scary
Even when I was informed and felt prepared, the reality is that a second pregnancy with cholestasis comes with a lot of stress and anxiety. I followed every indication from my healthcare provider that could help me to stay physically healthy, but I could not foresee how stressful and mentally exhausting a pregnancy with cholestasis could be from beginning to end.
There were so many concerns. Am I eating healthy enough? What kind of fats should I consume? The anxiety would keep me awake at night, Is this itching cholestasis? How early can the symptoms begin? Would I be able to tell if my baby is in fetal distress? should go to the emergency room? Uncountable scenarios were created in my head which was detrimental to my mental health before and after my delivery. Today, I am sure it would have been easier if I would have had the support of my therapist back then.
2. Self-advocacy and good communication with your healthcare provider are key
I knew there was a high probability of having cholestasis again, and I would come to my checkup appointments with many questions: what if my bile acids increase before showing symptoms? How can I differentiate dryness from cholestatic itchiness? Should I have basal bile acid levels measured? Soon, I understood that speaking up on my behalf was essential. I was fortunate to be in the care of a health provider that was willing to discuss my concerns and
manage my pregnancy according to them.
Because my doctor listened to me, I got my bile acids tested when my itching was very mild, and I was diagnosed with cholestasis of pregnancy just when my bile acids started to elevate. I also received pharmacological treatment immediately and I was scheduled for bi-weekly non-stress tests. My daughter, now 3 years old, was born at 36 weeks and 4 days. It was during a non-stress test that my doctor noticed she was in fetal distress, and I delivered my baby girl that same day after an emergency labor induction.
Each journey with cholestasis of pregnancy is a different and unique experience but taking care of your mental health is essential and might offer you resources that will also help you to advocate for yourself and to communicate efficiently and assertively with your healthcare provider.
Guadalupe Manrique Maldonado is an ICP Care ambassador. ICP Care is a 501 (c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education, raise public awareness, support the advancement of research and improve health care practices. For more information please visit www.icpcare.org
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