ICP Awareness Month
June is ICP awareness month. ICP stands for Intrahepatic Cholestasis of Pregnancy AKA Cholestasis. I’m taking this opportunity to tell my story of being diagnosed with this condition, and my experience with it so far. I’m not a Doctor, so I’m not giving medical advice with this article. At 29 weeks pregnant, I’m right in the middle of dealing with everything this diagnosis brings. Yet I feel like over these past 11 weeks, I’ve learned a lot and experienced a lot that can help other Moms along the way.
What is ICP?
ICP is a group of liver disorders specific to pregnancy which interfere with the flow of bile. Bile is a substance produced by the cells of the liver to aid in digestion of fats. During normal liver function, the bile which is produced is transported out of the cells and into the bile duct by special pumps.
During Intrahepatic Cholestasis of Pregnancy, the cells are unable to transport the bile out of the cells normally, which leads to bile acids building up in the blood. Elevated bile acids in the blood are associated with increased risk to the unborn baby. It is important to note that Intrahepatic Cholestasis of Pregnancy is not a single disorder, but a heterogeneous group of many different disorders which all lead to elevated bile acids. This means that the disorder presents very differently in different affected women.
The major risks are:
- Preterm labor/delivery
- Fetal distress
- Meconium Passage
- Respiratory distress syndrome (RDS)
- Failure to establish breathing (sometimes called fetal asphyxia)
- Maternal hemorrhage
One Day I Just Started Itching
This is my fourth pregnancy, and it is true they are each a bit different. Over the course of these pregnancies I’ve dealt with a wide range of symptoms and I’ve read about many more that I’ve been lucky enough to avoid. One day during my second trimester, at 15 weeks along, I developed severe itching on my chest. It started suddenly and didn’t let up. My chest was red and full of scratches. A couple days later I told a friend about this mysterious itching. I wondered out-loud if it had been caused by a new jacket I wore a few days prior. I hadn’t washed it, so I thought maybe it had irritated my skin. Still though, it had been two days and the itch hadn’t lessened.
Then one day the itch started to spread to my shoulders, arms, back, and legs. Every time I got in the car I had to make sure to take my coat off so I was able to scratch my back and arms freely, because they itched almost all the time.
The night time was the worst. I started to be able to almost set my clock by it. Between 10:00-10:30pm the intense itching would start up. No matter what I did it didn’t seem to help. Scratching with my nails wasn’t enough. I started using the edge a dull pair of scissors that I kept in my nightstand.
Dr Google, What’s Wrong With Me?
During one of these late night itch sessions I started to think, “Something seems wrong here… Do other pregnant Moms itch like this?” “Is this a weird pregnancy symptom I’ve never just never experienced?”
I went through some possibilities in my head. Did I mention I have read A LOT of pregnancy articles and books? Especially having my first child after just turning 18, I read every article and book I could get my hands on. So in my mind I knew that pregnancy can exacerbate sensitive skin, and I had heard of something called PUPPS. I hadn’t changed any detergent or used any new lotion, so I didn’t think it had to do with that.
I decided to consult with my good friend, Dr Google. You know how medical professionals always say, “Don’t google it.” I never take that advice. haha! I like to read up about every possibility when I’m facing something unknown.
As I began my search I found the first two scenarios that had come to my head. It could be sensitive skin (I was sure it wasn’t), PUPPS didn’t seem to fit since it tended to show up in the third trimester and came with a visible rash. I didn’t have a rash at all, although I did have abrasions from scratching so hard my skin would tear open.
Severe Itching During Pregnancy is Not Normal
Then I stumbled upon an article that said, “Severe Itching During Pregnancy is Not Normal.” I clicked in and started to read about a condition I had never heart of: ICP – Intrahepatic Cholestasis of Pregnancy. I felt a little panic start to rise as I read that this condition triples the likelihood of stillbirth.
I read a ton of articles about ICP that night. It seemed really unlikely that this condition is what I had, so many factors didn’t fit with my situation and my medical history. Still, I knew I wanted the blood test to be sure. The stakes were just too high. I texted the article to my husband with the note, “This is what I want to ask the Midwife about at our next appointment. I probably don’t have this, but I want to be tested just to be sure. Please read this so you have an idea what I’m asking about, and we’re on the same page.”
It’s Never That ONE Thing
You know when you go on Web MD with a headache and there’s 50 things it could be from, and one of them is the brain tumor. One of them is the ultimate worst case scenario. Veterans of the medical school of Google like myself pretty much know, it’s never that one thing.
I told my husband on a car ride the next morning after my itchy research marathon, “There are a lot of reasons that ICP wouldn’t be the likely reason for my itching.”
- ICP is a rare condition, only effecting about 1 in 1,000 pregnancies. That’s only .1% of pregnancies.
- It typically occurs in the third trimester, I was early in my second trimester. The itching had started at just 15 weeks, I was 17 weeks by this point.
- The itching wasn’t confined to the palms of my hands and the soles of my feet. In fact, my hands and feet really weren’t itching at all.
- ICP is more prevalent in certain parts of a population or geographical area — in the Latina population, and also in the geographical areas of Scandinavia and South America (especially Chile). None of these applied to me.
- Carrying multiples can be a factor – mine is a singleton pregnancy.
- IVF treatment can be a factor – I’ve never received this.
- Liver issues or damage in the past can contribute, I’ve never had any issues with my liver
- I don’t have a family history of it. No one in my family that I know of has ever been diagnosed with ICP. No one had ever even heard of it!
“You Can’t Have ICP, It’s Too Early”
Despite how unlikely it was that I had Cholestasis, I called the help nurse at my OB’s office and shared my concerns. She went through the likely culprits of changing my detergent or using a new lotion or perfume that irritated my skin. I assured her that I hadn’t and that this itching was very severe.
When I brought up ICP she asked if the itching was on the palms of my hands and soles of my feet. I told her it wasn’t. She asked if it kept me up at night, I told her it didn’t. The nurse told me that that’s where ICP begins, and that I couldn’t have that anyway, because it was too early. She said ICP was diagnosed in the third trimester.
While it is true that 80% of cases are diagnosed in the third trimester, 10% are diagnosed in the second trimester, and 10% in the first. Since this is more rare, not all healthcare providers are familiar with these early onset cases.
She told me to take Benedryl at night and call if that didn’t work. It was Wednesday, and I had an appointment with the Midwife on Monday, so I figured I’d talk to her then.
Between that Wednesday and Monday the itching got even worse. I did more research, and asked in a facebook group if anyone else had experienced intense itching like this during pregnancy — was I crazy to consider ICP? I got tons of responses, and I was referred to an ICP support group on facebook.
On Monday I told my midwife what was going on. She decided to order a blood test for ICP. I felt so relieved. She said they would test for AST and ALT, which had to do with my liver function. They would also test for bile acid levels.
“Getting The Call(s)”
The first call I got was on Tuesday. My AST and ALT were both within the normal range, my liver function looked good. This made it less likely that I had ICP, although I still could. I was excited to hear that, and waited for another call for my bile acid results. That would be the determining factor to see if I was diagnosed.
That night the itching got even worse. It was so hard to fall asleep. Once I did, the itching was so intense it woke me up several times. That’s when I knew, I have ICP. I felt it in my gut, and just knew it.
The next day the nurse called with the results, my bile acids were elevated to 11. I was officially diagnosed with ICP. She stated how surprised that she was that I was diagnosed so early at 18 weeks.
The midwife had called a prescription in for Ursodial, that I needed to start taking 4 times a day. She said I needed to pick it up right away and get started.
For a second I felt almost relieved. Finally a diagnosis, and a reason for what I’ve been experiencing. Now we can begin to treat the problem.
As soon as I hung up the phone though, I started to cry. I was so scared for my baby. How could it be that my body that was growing this little person that I already loved so much, was also poisoning him? I was shaking and immediately called my husband and reached out to my Mom, sisters, and best friend.
A Bottle of 120 Pills
Filling the prescription was a bit surreal for me. Typically I don’t even take Tylonel during pregnancy. Now I’m handed this huge bottle of pills, and I could hardly believe it was only a one month supply.
I decided I wanted to option of delivering my baby at a high-level NICU, so that if he was preterm, he wouldn’t have to be transferred. Although I had originally hoped to do a shared care plan between my Midwife and a Doctor in Davenport, that ended up not being a possibility. I won’t get too far into the process of weighing the possibilities, but it was an emotional process for me. I absolutely LOVE the Midwife that I was with, and have received care from her for 14 years. Since I was pregnant with my first daughter.
This was my first experience with a high risk pregnancy, and so I had many considerations I’d never had to think about before. In the end I went with a Doctor in Davenport, IA. It’s about an hour drive from my house. I was being offered more monitoring for this baby during the pregnancy, and the ability to deliver at a larger hospital with a NICU equipped to take care of earlier preterm babies. Although I hope this baby won’t be premature, it’s a possible outcome with ICP which can be made more likely because of my early diagnosis.
The Treatment Plan
My Doctor is so wonderful and supportive. We decided on a comprehensive plan to monitor baby:
- Once weekly appointments from 20 weeks – 25 weeks. Checking heart tones & blood pressure, and answering any questions I had. I had a lot! 😉
- Growth scans every 4 weeks starting at 24 weeks, since baby has been a bit behind on growth since the beginning.
- Once weekly NSTs (non-stress tests) + appointments for weeks 26 & 27.
- Twice weekly NSTs + appointments + once weekly BPPs (ultrasounds) from 28 weeks on.
- A bile acid blood test at or shortly before 36 weeks to determine if induction should be done at 36 weeks.
- Induction no later than 37 weeks.
So far it’s been very reassuring to have all of these appointments. Baby has failed one NST so far, so I checked into triage at the hospital for further monitoring. Thankfully after a couple of hours, everything was looking good and we were free to go. Failed extended monitoring at the hospital would result in immediate induction. Fingers crossed that we can avoid this scenario.
Fight the Itch, Save a Life
If you are pregnant and having severe itching, please talk to your Doctor or Midwife. I would highly recommend joining the Itchy Moms ICP Support group on facebook. This has been immensely helpful to me in dealing with the anxiety and the unknown during this pregnancy. Also, please visit ICPcare.org, they have many wonderful resources to learn more about this condition and even find a care provider who is knowledgeable about the best practices when treating it.
Eight weeks or less until we meet this sweet baby. Although this diagnosis comes with a lot of uncertainty, I know I’m doing everything in my power to keep this baby safe. Every one of my kids teaches me something new about myself and about life. I think this little guy is teaching me that not everything goes as planned. He’s teaching me to be flexible and to be open to finding joy in new and even challenging situations. He’s teaching me that despite all of the control I try to have over my life, sometimes we need to roll with the punches. Thanks little guy, we can’t wait to meet you.
Update : 1 Year Later
Our little stinker continued to give us plenty of scares, and throw us plenty of curve balls. I developed Gestational Diabetes, but was thankfully able to control it with diet.
He failed several NSTs due to prolonged heart decelerations and/or non-reactive strips. So his heart rate wasn’t going up and down like it should have been. His heart rate wasn’t spiking like it should have been, even when they “buzzed” him. For anyone not experienced with NSTs: If baby isn’t responding the way they like to see with heart accelerations according to their gestational age, they will sometimes “buzz” baby. A device vibrates and makes a loud noise against your belly. It raises baby’s heart rate by startling them a bit. Well our little one wasn’t showing those heart accelerations, even when “buzzed” twice a week. Nurses kept telling me we must have a really chill little guy in there. At the time I thought they were just being nice, but they were so right!
Our little Owen Lennon was born healthy at 37weeks 1day, and is the most easy-going baby ever. The induction went wonderfully, and I was able to follow my birth plan: no pain meds, lots of walking, and laboring in the tub. He weighed 5lbs 8oz of pure perfection. Aside from some trouble keeping his body temperature up, and doing some “singing” as he got his respirations under control, he had zero complications. No NICU time for him, and it was my easiest recovery yet.
After he was born I could easily see why he would fail his NSTs, he was so sleepy, it was hard getting him to wake up to eat! He didn’t cry, but made a quiet little sound that sounded like a tiny kitten. He experienced failure to thrive in the beginning because it was so difficult to keep him awake to eat, he got down to 4lb 10oz. However, by the time his actual due date hit, he was back up to his birth weight! He is now 10 months old, and such a bubbly and happy and HEALTHY baby.
Thankful For Amazing Medical Care
I saw The Group in Davenport for the last half of my pregnancy, specifically Dr. Day. I cannot recommend them enough. Every staff member I interacted with was so friendly and knowledgable. Dr. Day is amazingly compassionate, warm, honest, knowledgeable, and helpful. She always made time to listen to my questions (I had a lot). Her and the rest of the staff at the Group always made me feel seen and heard, confident that my care was a top priority. I delivered at Genesis East in Davenport, and they were absolutely fantastic as well. If you find yourself facing this diagnosis (or even if you don’t), and you are in my area, I would recommend them 100%.
In Closing, Again
It’s June 2020 as I write this update and I can’t help but read the “In Closing” paragraph above and smile. With COVID-19 and everything else 2020 has thrown our way, I can’t imagine a better lesson than “being flexible and open to finding joy in new and challenging situations”. We love you so much buddy! You were worth EVERY. SINGLE. ITCH.