ICP Care Team Member
As a mother of three ICP babies, my hope is to help women like me to get the treatment they need to protect the lives of their unborn babies. I have a degree in biology from the University of Wisconsin, and I am happy to be able to use my science degree and background, as well as my sister, who is now a doctor, to help women learn about this disease and seek the proper medical attention.
My ICP story began with my first pregnancy, and like so many women with ICP, my first ICP pregnancy went undiagnosed. In retrospect, I can see many of the warning signs – I remember asking a friend if she, too, had been really itchy when she was pregnant. I had terrible right upper quadrant pain throughout the pregnancy; pain so debilitating that I found it nearly impossible to drive or even sit in a car. Even sitting in a chair could be excruciating. I had terrible bruising all over my legs, a sign of vitamin K deficiency which is another danger associated with ICP, and when Sydney was born she went into distress. I am thankful every day for my doctor who intervened promptly, allowing her to be born safely. After delivery, I also hemorrhaged, yet another complication of this disease.
In my second pregnancy my sister was in medical school and I asked her about this intense itching that I had that was keeping me from sleeping and causing me to intentionally scratch the skin off my feet just to get a little reprieve. She made the diagnosis of ICP and sent me to my doctor where we ran liver function and bile acids. Liver functions came back elevated within hours, but I was hospitalized for preterm labor the next day before bile acid results were received. I was treated with Ursodeoxycholic acid and delivered Alec at 36 weeks. My third pregnancy saw worsening ICP as my bile acids and liver functions were not able to be controlled with medication. Lucas was born at 35 weeks via urgent Cesarean section as he was breech. He suffered from failure to establish breathing at birth and needed to be transferred to another hospital for more respiratory support. He did well, and three days later, when I was discharged, I was able to go pick him up and bring him home, too.
After pregnancy, I learned about the importance of follow-up care for all women with ICP. Approximately six months after Lucas was born, I was diagnosed with Familial Intrahepatic Cholestasis (FIC). This came after follow-up testing for worsening ICP-like symptoms, and many appointments with gastrointestinal specialists and finally hepatologists. FIC is a genetic liver disease that caused me to develop ICP secondarily when pregnant. It also explained why my ICP was not able to be controlled by normal medications, as FIC does not respond well to Ursodeoxycholic Acid. Looking back at my medical records, I can see that I had been to the doctor many times before this for FIC symptoms – unexplained itching and intense right upper quadrant pain – but we were looking for answers in the wrong places.