Amelia’s ICP Story
Amelia Pregnancy Story ICP Care

In October of 2018 my wife and I were blessed to become pregnant with our first child via IUI. I was in my second and final year of pharmacy residency specializing in pain management and palliative care. Despite the stress and demands of residency we were thrilled to be growing our family and my pregnancy was marked with support from family, friends and colleagues and our employers. It was, unfortunately, also marked with severe morning sickness lasting through the day and most nights. By 20 weeks we had just about perfected the regimen of Diclegis, hydration, ginger candies, and bland snacks to get me through most days without significant disruption to daily life and work. Uneventful weeks passed and we completed our registry, began decorating the nursery and really dreamed of what our lives would be soon. Although my nausea and vomiting was finally under control I had recently become exhausted and was having trouble getting through the full work day without feeling like I was in serious need of a nap. I was feeling first trimester levels of fatigue and not enjoying the stereotypical second trimester energy.

As spring finally came and the cold of upstate NY winter broke we were happy to get back into one of our favorite hobbies, gardening. We had spent one beautiful April weekend almost entirely outdoors in the garden and that Sunday night I was up with itching on my hands for much of the night. I took antihistamines and assumed I had gotten into something in the garden that irritated my skin. I thought nothing else of it even when the antihistamines didn’t help.

That week I had a routine appointment at the OBGYN and while casually chatting with the nurse practitioner I mentioned my weekend in the garden and the severe itching that had ensued. At that her casual tone shifted and she implored me to alert her if this happened again or did not improve. I told her that it really had not improved much but was manageable during the day. At this time, despite, nine years of education and 2 years of residency in health care I had never heard of ICP and had no idea that my itchy hands could be more than an allergy. I assured her I would call if it did not improve but thought to myself that I can handle atopic dermatitis on my own. I hadn’t even tried a topical steroid yet, surely this would be fine.

Later that night when recounting my appointment at home I thought back to how serious she had become and decided to put my symptoms into Google. I first came across PUPPS but this didn’t really fit. I did not have a rash and I only had itching in one place- my hands. Eventually I found ICP Care’s website and the more I read the more the symptoms came together. The extreme fatigue, itching on only my hands, no rash, worse symptoms at night. It all fit. I still hoped it was allergies but told myself if it worsened or did not resolve soon I would call for a bile acid test. Sure enough, it did not improve and the itching spread to my feet as well.

My first bile acid test was around 30 weeks and was >100. Where I live in NY I was told that the test could take up to 2 weeks to return. Fortunately, the timing must have aligned well with when it would be sent out because I got my results in under a week and was started on Ursodiol. The ursodiol helped my symptoms but left me with gastrointestinal side effects. The nurse practitioner who called and gave me my results told me I had ICP. She said that I would have two appointments per week for the remainder of my pregnancy; one for a non stress test + ultra sound and one for just a non stress test. She said that I would be induced between 37 and 38 weeks because I was at increased risk of still birth or intrauterine demise. She told me this in the middle of my work day on a brief and hurried phone call while I sat with patients in my own waiting room waiting to see me for medication management. I remember staring at my computer screen blankly for at least 5 minutes before calling my wife. I felt clueless, helpless and confused. How could I have ICP today when less than a week ago I had never heard of it? How was my previously healthy pregnancy now at increased risk of still birth?

Resident offices are notoriously bleak. I was on a rotation in an anticoagulation (blood thinner) clinic when I was diagnosed with ICP and I remember the extremely poor lighting, obnoxiously loud window air conditioner that smelled weird and barely broke the early summer heat and I remember feeling like I was never there between all of my appointments, frequent trips to the bathroom (thanks to ursodiol) and half-awake state I lived in. I also spent more time researching ICP than I did learning about bridging surgical patients or adjusting warfarin doses. As I researched and pored over the (limited) research I found that at 37 weeks my risk of still birth or IUD would begin to rise. I realized that I wanted my baby out BY 37 weeks. I did not want to be induced that late; not with BA over 100.

My July baby would be a June baby. Except, all of my appointments were with nurse practitioners and as I told them each what I wanted they listened but told me that they could not choose my induction, that would be up to the OB. I told them that I wanted another BA test and was told there was “no point” because the results would take so long. I even scheduled appointments with an OB and would arrive only to find I had been rescheduled with an NP. Finally, at an appointment during week 35 I told the Nurse Practitioner that I was not leaving until I saw the OB. I was willing to wait. I felt that I did not have a choice. I had articles with me, highlighted and marked with my rationale why I needed to be induced at 36 weeks. I was frustrated that I had not been given any follow up BA tests. Every time I didn’t feel my baby move for more than a few minutes I was chugging cold water to try to get him to wiggle. I knew that the bi-weekly non-stress tests were only reassuring for the moments while they were happening.

Finally, an OB became available. He has a kind, gentle manner and listened to my concerns intently. I felt more heard by him than I did some of my physician colleagues at the hospital where I was a resident. He admitted that their practice usually only sees 1-2 patients per year with ICP. He admitted that they could do a better job staying up to date on the literature and he agreed that a 36 week induction was a good call. I left there with an appointment for steroid shots and an induction.

At 36W+3D Charles Webster Persico was born via C-section after a 3 day failed induction. Despite being born late pre-term he score 9 + 9 on Apgar and was able to room-in with us from the start. He needed a little help with his blood sugar (which I attribute to me not eating much for 3 days prior while I was being induced more than anything else!) but was otherwise a healthy baby. Miraculously the pathology on my placenta was clear, as well.

Since my experience with ICP I have had time to reflect and to wonder—what if I was not well versed in interpreting scientific literature? What if I didn’t have access to it? What if that NP hadn’t caught my comments about my itchy hands when were casually chatting? Why had I not learned about this condition in pharmacy school? In a crazy stroke of irony my capstone presentation had been on the use of Ursodeoxycholic acid in cystic fibrosis. How had I never come across its off-label use for ICP? If it had not been for the ICP Care website and Facebook groups I would have felt even more lost and alone. I am eternally grateful for the nurse practitioner who raised a red flag, to those who manage the ICP Care website and to the moderators and members of the ICP Care Facebook group. After 2 &1/2 years I finally realized what I wanted to do with all of this gratitude and reached out to ICP Care to find out how I could volunteer. I am now thrilled and honored to be helping in the capacity of an ICP mom and a clinical pharmacist. I will never forget the support I received during my pregnancy and hope to pay forward a fraction of that to someone else.

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.


Upcoming Events

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.