Today, my baby turns four months old. Tomorrow, the world will join together to recognize Rare Disease Day, a day when people who have suffered rare diseases share their stories and spread awareness of those conditions. This is the first year I have a story to share, and it is the first time I’ve shared it in its in entirety. Though I have talked about pieces of my story both publicly and to family and friends, only my sweet husband knows the whole picture. Only he was there during the nights when I slept with bags of frozen peas on my feet because numbness was the only way to quell the itch. Only he heard my unspoken fears about whether our baby would be born alive. Only he saw my heart break, and only he knew how to reach past the pain and touch it in a way that allowed it to slowly mend.
Intrahepatic Cholestasis of Pregnancy affects between 0.1 and 0.2% of pregnancies in the US. It is a hormone-influenced liver disorder that generally “resolves” upon the birth of the baby. There is very little research on the disease, and there is no known prevention or cure.
ICP usually begins in the third trimester. In cholestasis, the flow of bile (a digestive fluid from the liver) is impaired, causing it to build up in the skin. This results in intense and severe itching, often beginning on the palms and soles of the feet. Toxins are not removed from the body. Nutrients are not pulled from the food. The itching becomes so intense that women literally scratch themselves raw with no relief. The sleep deprivation, psychological suffering, and nutrient deficiencies often result in depression, and sometimes even suicide.
The itching began for me when I was 35 weeks. It started small. I noticed that I was scratching my legs more than usual. Within days it was affecting my arms, palms, torso, back, and feet. It was most severe at night. In the beginning, I thought it was an allergic reaction or a normal pregnancy “thing.” But I had been pregnant before, and had never experienced this. Still, every pregnancy is different, right? It only took a couple of days before I knew that something wasn’t right. THIS wasn’t right. It wasn’t normal. It was like a fiery, searing itch so deep in my skin that I couldn’t reach it no matter how hard or long I scratched. There was no relief. There was no sleep. By the third night, my husband was using an electronic massager on the itchy areas for hours every night just to allow me to fall asleep. In an hour or two I would wake up to pee, and the itching would be so fierce I couldn’t fall back asleep. I would spend the night wandering the house, sitting on the washing machine with my legs in the chest freezer, crying from the relief the cold numbness brought. Jon would wake up, pull the massager out, and get to work again so that I could close my eyes and rest. By that third night, I had bloody lesions on my legs from scratching. I literally could not help myself. For two weeks straight, from that first itchy night to the night of Ander's birth, I got 1-4 hours of sleep a day.
The same week, I went into pre-term labor for the second time. The first instance had occurred at 28 weeks, but had luckily stopped on its own. This time, it didn’t stop. The contractions got stronger and closer together over the next 8 hours, and I finally went into the birth center to get checked. We were able to stop the labor, and I went home.
I started researching pregnancy itching. It didn’t take long before I knew what I had. Intrahepatic Cholestasis of Pregnancy. I was a textbook case. The words jumped out at me. “Itching.” “Dark urine.” “Fatigue.”
I knew that fatigue. I had been so tired for the last few weeks, even before the sleeplessness started, that sometimes it seemed like an impossible task to stand up and move from the living room to the kitchen. My arms felt too heavy to lift. I just thought I had pregnancy fatigue worse than most people. I don’t know how I took care of my toddler during that time. I know I didn’t do it on my own. There were days when I felt unseen hands literally lift me to my feet.
As I researched, more words jumped out, and my stomach felt sick. “Pre-term labor.” “Meconium aspiration.” “Stillbirth.”
Babies die from ICP. Lots of them. One minute, they are fine—almost full-term, squirming around in their amniotic fluid—and the next, they are still. It happens so fast. Monitoring gives no guarantees. As a mother nears full-term, and hormones rise to prepare for birth, bile levels rise. Liver enzymes rise. Babies enter a danger zone.
At the birth center where I was going to be delivering, there were three midwives and an OBGYN. They are hands-down the most brilliant, competent, and inspired medical professionals I have ever known. I called on a weekend and told them that I wanted a blood liver panel drawn. From that first moment, they took me absolutely seriously. They talked with me about what I was experiencing, and then bumped up my appointment to Monday. They took a blood draw as I had requested. The OB said the last ICP pregnancy she had handled was over a decade ago.
Bile levels should rest between 1 and 7. Anything over 10 is considered cholestasis. Anything over 40 is severe cholestasis.
It took a week to receive my results. My levels came back at 46.
In cholestatic pregnancies, as the bile levels rise and liver function breaks down, bile and toxins move through the placenta to the baby. In mild, untreated cases, stillbirth rates can be as high as 15%. In severe cases, as high as 40%. If caught early enough, there is medication that can be used to mitigate the risks.
Mine was not caught early.
Mine was not caught early.
I was now a high-risk pregnancy. I could not deliver at a birth center. I could not deliver on my own. ICP babies are generally induced and delivered no later than 37 weeks. Most are delivered earlier. Everything I had wanted and planned and hoped for and counted on had changed. I was 36 weeks 6 days when my diagnosis came back.
My OB sat me down and we talked. We talked about the risks and the options. We could do another draw that day and monitor for a week, with ultrasounds every day. At the first sign of fetal distress, we could deliver. We could give him that one extra week to grow. Boys’ lungs often mature slower than girls’. There was about a 50% chance he would be a NICU baby at 37 weeks. We could try some natural induction methods instead of a harsh medical induction. She could put me on medication to bring the bile levels down.
Or we could schedule an induction immediately and get him out.
We both leaned toward giving him one more week. They drew another blood panel, knowing the results would take a week to return. I was prescribed the medication to bring my levels down. Jon and Eden and I went home. And we prayed. We prayed a lot. We were given priesthood blessings. In Jon's blessing, he was promised that the answer to what we should do would come clearly, in the wee hours of the morning. In my blessing, I was promised that I would be allowed to go into labor naturally, and that my son would be born healthy.
In the morning, we awoke. Jon had received no answer, so he figured we were on the right course. We would wait a week, assuring a healthy baby and a better chance of a natural labor. But at 7 am, I got a call from our doctor. She had awakened at 2 am with an intense agitation about the decision to wait. She hiked a mountain in the dark, seeking answers for our family, and came down with a certain knowledge that we needed to induce immediately or we would lose him. I don’t know what she experienced on top of that mountain. That is between her and God. But I knew that, just as Jon’s blessing had promised, our answer had come clearly, in the wee hours of the morning. It just hadn’t come to him.
We packed a bag and headed to St. Joseph’s Hospital. We were not ready for a three-week early baby. But we both felt an overwhelming peace. More than I have perhaps ever felt. There was a reason for this. This was part of a higher plan.
When we got to the hospital, we discovered that I was already in labor. Naturally, as I had been promised. They decided to augment it with Pitocin to get the baby out as quickly as possible. That labor was like walking through hell with angels at my side. I have never experienced anything so intense and excruciating. I have never felt so close to heaven. Partway through, I asked for pain medication of any kind--begged really--but my doula calmly got in my face and explained that it would be too dangerous for the baby. They didn’t know if his lungs were ready. He would likely be sedated by the medication. His heart rate would drop. There was a high chance of him aspirating meconium. It would be an emergency C-section. He might or might not survive.
At 9:36pm, I gave birth to Ander Orion, naturally and with no medication. I was on oxygen at that point, and his heart rate had dropped. But then he came. And he was perfect. He was healthy. He was BIG.
The itching was gone within hours of his birth. My levels dropped to normal. My recovery was a breeze. One week later my second blood panel results came back from the day before induction. My levels had risen from 46 to 96. My liver enzymes, which should have been 20-40, were in the 400s.
Intrahepatic Cholestasis of Pregnancy has a 90% chance of recurrence in severe cases. They don’t know why it happens. I had none of the risk factors. I did not have the genetic mutation that is present in 40% of the cases. I was not carrying twins. I had not been on progesterone supplementation. I had never even had hormonal birth control. I was not over 40. I had no history of liver or gallbladder issues. I ate a whole-food, mostly sugar and preservative-free diet. There was absolutely no reason for me to have gotten this disease. But I did. And if we have future children, statistics say I will have it again. I cannot think about having another child without accepting the fact that I have a chance of burying that child. And if not, a preemie is likely. For a while after Ander was born, I struggled emotionally with that. I struggled with not understanding the WHY—with feeling like it wasn’t fair. I had done everything, EVERYTHING, possible to have a healthy pregnancy. And in the end it felt like it didn’t matter. None of it mattered. I got sick anyway. My own body was killing my child. I didn’t DESERVE that.
But here’s the thing. We don’t have challenges because we deserve them. We have challenges because we need them. I prayed a lot, and I never got a “why.” All I got was, “It was necessary. You did everything you could have. This was part of the plan.” And, in the end, that has to be good enough. In the end, the peace comes. It might take days or weeks or months or years. But it comes.
And with peace comes hope. Maybe it’s just me. Maybe it’s just because I’m an optimist. But 10% of the time ICP DOESN’T recur. Why not for me? Whether or not we have more children, I cannot submit to fear. If I bow my head to statistics, then hope dies. And I refuse to live like that.
Ander’s name means “Man of Courage.” It is the name he chose before he was born. He is a survivor. And though science says I now have an “increased chance of liver cancer, gallbladder disease, etc etc” in the future, I'm not worried. The scabs on my legs have healed. My heart is mending. I’m a survivor, too.
Happy 4 months to my little Itch. He’s worth everything.