October is Pregnancy and Infant Loss Awareness month, and as such it is a time that holds special importance for us at ICP Care. This month serves as a potent reminder of our mission to improve health care practices surrounding Intrahepatic Cholestasis of Pregnancy and help deliver healthy babies through education, awareness, and advocacy. Every day in my position at ICP Care, I am so fortunate to see reminders of our work in the form of photos of healthy newborns and happy parents. However, far too frequently I am also reminded of the work that remains to be done when I am confronted with the tragedies of the babies who were lost to this terrible condition. Dealing with the soul-crushing grief from heartbroken parents is a sad reality of my work. Whenever I broach the topic of stillbirth, I like to take the opportunity to remind my fellow Toxic Moms that Intrahepatic Cholestasis of Pregnancy is a highly treatable condition. With the medication Ursodeoxycholic Acid and early delivery, the risk is about the same as an uncomplicated pregnancy. However, there are certain pregnancies which are at higher risk.
Each year I host a local get-together for moms and families in my area where we can meet one another and connect. I must admit that I was shocked at the speed with which a bond can be formed with another person who has shared this experience. As an admitted introvert, I do not typically connect with other people so easily, yet at these gatherings I find myself making instantaneous friendships. A few months ago, I hosted one such gathering and met a new friend. Sarah arrived at our picnic with her husband, wearing her new baby Lydia. I was thrilled to have a new mom joining us. Then, through our conversations, I learned that Lydia had a twin sister, Naomi, who was notably absent. She had been stillborn. Sarah and I spent a good deal of time talking that day. I shared with her our resources for moms and families who had experienced a stillbirth, and asked her if she would like to join us for our annual fundraiser in September. I was so pleased that both she and Lydia were able to attend.
Today, in honor of Pregnancy and Infant Loss Awareness month, I am doing something new for my blog post. Today I share Sarah’s story, in her own words. Sarah’s story is an example of one of those pregnancies that is at higher risk, and shows us both the best and the worst that Intrahepatic Cholestasis of Pregnancy has to offer.
- My husband and I decided to start our family a little over three years ago. Over the course of the next two years, we suffered through three miscarriages and months of trying. After our third miscarriage and no answers as to why they kept happening, my doctor prescribed Clomid. In April of 2015, at 5 weeks and 6 days, an ultrasound revealed not one, but two precious little babies. We were happy yet terrified that we would once again lose them. Though the pregnancy came with challenges early on, for the most part, everything was progressing beautifully.
Fast forward to the middle of September when I started itching. Someone had just given me maternity clothes, so I assumed my skin was sensitive to the detergent they had been using. I had no frame of reference for normal pregnancy itching. It didn’t occur to me that something was seriously wrong, even though I wanted to crawl out of my skin. The nurse at my doctor’s office suggested topical remedies and antihistamines. If I wanted, I could come in and be tested for cholestasis, but she said that condition was rare. Having been to the doctor nearly every week since I had found out I was pregnant, I was tired of appointments and was in a stretch of nearly three weeks between appointments. So, I decided I would wait. I had convinced myself that the itching was better than it had been.At my next appointment (just before 28 weeks), my doctor didn’t wait for me to ask about the itching. He brought it up and ordered the tests. When the results came in a few days later, he called and told me my liver enzymes were wonky (his words, not mine) and wanted me to come to the hospital to rule out preeclampsia. My ASTs and ALTs were in the 600s and 800s. He started me on Urso three times a day. When my BA levels came back the next week, they were in the mid-20s.Two days after I was diagnosed, we celebrated our wedding anniversary with an overnight trip. I put my socks in a mini-fridge at our bed and breakfast. I bought a bottle of menthol lotion that I carried with me everywhere I went. When we returned home and went to see a play, I brought ice packs and rotated them among the itchiest parts of my skin. For eight more long weeks, I continued on this way. I was prescribed more medication to help me sleep through the itch. I went in weekly for NSTs and lab work. I had NSTs twice the week the girls were born. I lost my appetite and primarily survived off of the smoothies my husband made for me. I didn’t gain any weight from the time I started itching in September. Along the way, the itching and the illness became normal. There were days where I thought my itching wasn’t all that bad or that I wasn’t really that sick. It wasn’t until after I delivered the girls that I realized how sick I had been.
Despite doing everything I was supposed to, I went to the hospital at 36 weeks and 3 days thinking I was in labor, two days before I was going to be induced: Twenty-four hours after I had last heard their perfect heartbeats. Naomi was gone. We assume it was because of ICP, but no one knows. There were no answers. Both girls were subjected to the same conditions. Lydia was ok; Naomi wasn’t. November 28, 2015 became the best and worst day of my life.
My girls had both passed every NST with flying colors. We had scheduled an induction for 36 weeks and 5 days, well within the recommended guidelines. My ASTs and ALTs had returned to normal before the girls were born, and my BA levels never rose. My girls were always very active, right up until the end. All of these things factored into my decision to wait until 36 weeks and 5 days to be induced, until after Thanksgiving when my doctor returned.
Though I know I made the best choices I could with the information I had, I still regret my decisions, wondering if earlier treatment might have saved Naomi or if both of my girls would have had a good outcome if we had induced just a day or two earlier. ICP is such a scary condition, because it is unpredictable. There is no way to know whether bile acid levels will surge or how long will be too long. Decisions about when to induce feel a little like Russian roulette – wait a little longer to give the babies a chance to develop further or induce early to avoid the risk of stillbirth. This month, I hope to bring awareness to infant and pregnancy loss by remembering Naomi and the other three babies we never had a chance to meet. But, I also hope to continue to spread awareness about ICP in hopes that maybe one day, research will unravel the mysteries around its devastating outcomes.