My Intrahepatic Cholestasis of Pregnancy (ICP) Story

By Raven, United States, January 7, 2015

When the word “Pregnant” showed up on my ClearBlue pregnancy test one afternoon in January, I just about flipped my lid. We hadn't planned for this, my husband and I both agreed we weren't ready, and the natural family planning had been working very well for the past 4 months. Well, as the saying goes, ‘Life finds a way’!
First doctor’s appointment we got to see the fetus on an ultrasound to confirm and my due date was set at September 18th, 2014.
At my next appointment they drew a ton of labs, and I got another ultrasound to confirm everything was still healthy and growing. Scheduled my 12-weeks testing & 16wk appointment.
12wk testing was a complete ultrasound – got a gender guess for a boy based on the positioning of the tubercle. Everything looked healthy – all the labs from the finger-stick were normal & there was no sign of a neural tube defect.
At 20 weeks we got to learn that our baby was for sure a boy! Everyone was shocked, as only girls really run in my family – so I got to break the curse!
All of my 24-week AFP’s were all cleared, and even my chronic hypertension was completely under control for the first time in the last 5 years. I thought we were going to be smooth sailing for the remainder of the pregnancy as well. I was working full-time at a desk job and had been under little to no stress the entire pregnancy. Everything was perfect.
I guess you could say that I had a completely normal pregnancy…up until the beginning of my third trimester.
Just around the time I hit 30 weeks in mid-July of 2014, I began to itch. We aren’t talking about the occasional scratch here and there, but instead what felt like I had flea bites or healing sunburn all over my legs/feet from the knees down and my arms/hands from the elbows down. It wasn’t a debilitating itch, but it was definitely noticeable and very irritating at night as I tried to wind down to go to sleep. What was funny about it was that there was no rash or skin discoloration of any kind – so I was baffled. I mentioned it at my next OB appointment, and my doctor seemed to do a double-take. She asked a few questions, before telling me that I needed to come in for fasting labs first thing in the morning – they wanted to draw a liver function panel and bile acid measurement.
So, I got up at 6 the next morning, went in for my labs, before heading to work. I was told that it would be a 5-7 days for test results to come back, since they had to send the bile acids to Virginia to their special lab, so I would have results sent to me and receive a call with an explanation by the end of the next week.
Sure enough, I received a ping on my MyQuest app on my iPhone six days later. Everything looked good, but as I scrolled down, I noticed that there were a few levels that were abnormal, or ‘out-of-range’. My Albumin levels were low at a 3.4g/dl with a ref. range of 3.6-5.1 g/dL, Alkaline Phosphatase was high at a 141 U/L with a ref. range of 33-115U/L, AST was very high at 69 U/L with a ref. range of 10-30U/L, and my ALT was off the charts at 209U/L with a ref. range of 6-29U/L. The bile acids were 14 umol/L. I had no idea what any of this meant, but the ALT levels scared me a little, so I was on the phone with my OB office that afternoon, requesting a call with an explanation ASAP. I wanted to make sure that my blood pressure stayed under control, so I didn’t want to stew over this for very long – I needed the peace of mind.
I received a call back that afternoon from the triage nurse at the office, stating that she had conferred with another doctor in the practice, and that he said everything looked fine – just watch the blood pressure, since that can elevate liver enzymes if uncontrolled – instructions were to make an appointment to follow up with my doctor at the end of the week. I still felt a little leery of the information, but went on with my day.
At my appointment the following Friday, my doctor entered the room with a very sheepish look on her face – as if she were ready to apologize for something. She stated that the doctor who had given me the information was misinformed – as he had never heard of the condition for which my doctor was testing – he assumed she was testing for pre-eclampsia and HELLP Syndrome. She said that the elevated liver enzymes, in conjunction with my bile acids being slightly elevated as well, were indicative of ICP – Intrahepatic Cholestasis of Pregnancy. The itching is what had tipped her off, as she is one of the only 2 doctors in the practice who recognize this disease for what it is.
Intrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder which occurs during pregnancy. This condition affects the normal flow of bile. Bile acids are chemicals in the bile of the liver that help with digestion. With ICP the bile flow begins to slow down &, consequently, the bile acids build up in the blood. This then results in itching that can vary in severity and type. The itching can be bothersome to severe itching and is often worse at night. Although it has been reported as early as 8 weeks pregnant, it is more common for it to begin in the third trimester around 30 weeks, when hormone concentrations are at their highest levels. Woman can expect to experience itching that begins on the palms of their hands and soles of their feet, dark urine, pale stools, Upper Right Quadrant (URQ) pain, sleep disturbance, & potentially jaundice if the numbers get high enough.
It can also lead to preterm labor in many cases if uncontrolled, as the body becomes more sensitive to the oxytocin hormone and the placenta /calcifies ages more quickly. This has been seen in as many as 60% of deliveries in some studies, however without active management most studies report rates of 30%-40%. Earlier presentations of Intrahepatic Cholestasis of Pregnancy (ICP) seem to carry an even greater risk of preterm labor, as well as twin or triplet pregnancies. Also, there are some data to suggest that neonatal respiratory distress (RDS) following ICP may be a consequence of the disease process.
Still birth tends to occur in the last few weeks of pregnancy. The reason this occurs is not completely understood. Although with proper medication and early delivery by 37 weeks the risk is believed to be that of an uncomplicated pregnancy. Research has shown that a bile acid blood level over 40 micromol/L during pregnancy appears to be associated with an increased risk of complication to the unborn baby. ICP is associated with higher rates of intrauterine fetal demise (IUFD) also known as stillbirth. These are the ways in which bile acids may harm the baby based on research. These include abnormal heart rhythms, abnormal contraction of the veins supplying the baby with nutrients, greater sensitivity of the baby's intestines to bile acids that may cause passage of meconium, intensified susceptibility of the uterus to hormones which may trigger labor and premature aging of the placenta due to exposure to elevated bile acids. Additional research is necessary in this area since some pregnancies appear to be at higher risk than other pregnancies with Intrahepatic Cholestasis of Pregnancy.
She said that she didn’t want to take any chances. She wanted me to spend a night in the hospital with continuous fetal monitoring, and collect a 24-Hour urine sample to rule out pre-eclampsia/HELLP as well. She was also going to refer me to see a Perinatologist once a week in the future.
I checked into Triage at about 6:30PM, only to be told I should have gone to L&D, who told me I belonged at Ante-Partum. It was a mess…no one knows the disease! I spent just under 24 hours there, collecting the 24-hr urine sample, having labs drawn, and having baby externally monitored. I was barely cleared to go home the following evening, as my proteins were 5mg/dl below the cut-off, and had an appointment with my Perinatologist the following Friday.
From then onward, I had weekly ultrasounds (biophysical profiles), as well as non-stress tests twice weekly. I was prescribed 300mg Actigall, which I began taking every 8 hours with food – to control the bile acids. I had labs redrawn every week to check on the liver/bile levels. I was also told I would need to be induced at 37 weeks. The date was set for August 28th to come in and start with Cervadil the night before. I was super nervous.
I had dreamed of the completely normal, drug-free labor and delivery. In the past, my doctor had even agreed to allow me to go to 42 weeks if I was healthy. I wanted to labor at home, come in toward the end, and avoid all interventions. Induction at 37 weeks was NOT what I had in mind, and my hopes were marginally shattered.
Everything was moving along without further incident – baby was measuring well, amniotic fluid levels were good, and he was handling the NST’s like a champ. I stopped worrying about it all, until I noticed that I had lost my mucus plug at 35 weeks + 2 days. There was no bloody show, but it was definitely my mucus plug on the bath tissue. My OB didn’t seem concerned, as it is only indicative of the cervix ripening – not necessarily labor being close. My doula, however, said to be on the look-out for labor symptoms or rupture of membranes.
Sure enough, 3 days later (35 weeks +5 days) at 2AM, my water broke.
I had gotten out of bed to use the potty. I felt a sharp pinch above my right hip – but thought it was gas pains. I got ready to stand from my seat on the toilet when I felt a sudden gush of liquid. I knew instantly what had just happened, and looking down to see a toilet bowl filled with pinkish, bloody fluid confirmed my hunch.
I ran for the closet and started throwing clothes and toiletries into a duffle. (I did not have a bag packed yet, since I thought we were still at least 2 weeks out from the induction, and over a month from my original due date.) I grabbed my cell phone and called the Triage Line at my OB’s office. The nurse said she would page the doctor on-call. I received a call back within 15 minutes from one of the other OB’s in the practice. She asked me a few questions and told me to head in to L&D. She said that normally they would let you labor at home, but since I was high-risk and premature, she wanted me monitored to make sure the baby wasn’t in distress (which can apparently be a cause of premature rupture of membranes).
So, with everything packed up, I called my mother (who lives 3 streets over) and my Grannie (who lives 5 hours away) to give them a head’s-up that we were headed to the hospital. I also called my doula to let her know the situation. She said to keep her posted and let her know how progressed I was, and when I started having contractions.
I got to the hospital, checked into L&D. They wanted to take me to a Triage room to check and see if my water had actually broken, but when I turned to follow the nurse, a doctor walked by and said, “Nurse, her pants are wet. Her water has obviously broken. Take her to a Labor Room.”
So they got me set up in Labor Room #8. I declined the hospital gown, as they were starchy and hot, and opted to wear a sports bra and maternity tank and wrap a sheet around my waist. They got me attached to the external fetal monitor, placed a hep-lock (which took them 4 sticks to get a good vein – I still have paresthesia in the back of my hand from this), drew some blood, and told me to hurry up and wait.
Since I had not yet had my Strep-B test, they stared me on the 1st of three bags of Ampicillin, just in case I was positive. They checked my cervix – verified that my waters had broken, and that I was 4cm dilated, 50% effaced, and baby was at -2 station. I was shocked that I had progressed that much, and quickly text my mother, grandmother and doula.
My mother showed up about half an hour later, having called into work to be there. My grandmother was on the road. My doula would be on her way shortly.
I started to really feel the contractions at about 6am. They were not debilitating, but I definitely had to concentrate and breathe through them. My doula arrived about that time, and was geared-up and ready to assist. My husband took a nap on the sofa, and we had a shift-change with the nurses. They started the second bag of Ampicillin, and did another cervical check. I was at 6cm, 75% effaced, and baby was still at -2 station. My doula had me drinking and eating ice chips between contractions, and getting up at least every hour to empty my bladder.
They started the 3rd bag of Ampicillin at 9am – just as my grandmother arrived. The contractions were getting much closer together – about 2 minutes apart, and I really had to concentrate through them, as they lasted nearly a minute each. They did another cervical check and found that I was still at 6cm, but I was 100% effaced and baby was at -1 station. My doula said that now was the time to get out of bed and onto the birthing ball to see if we could bring that baby down.
I spent what had to be at least 2-3 hours on the ball and on the toilet. And at noon, some of the worst contractions started to pummel into me. They were nearly on top of one another, and the line on the monitor was way at the top of the paper – showing crazy intensity. The nurses asked if I wanted another check, but I said “not until I feel pressure”. I was not interested in getting discouraged this late in the game.
By 12:30 I was seriously considering an epidural – which is crazy, since I am staunchly against using pain-medication of any kind – and my mom and doula had to talk me down. My husband was obviously losing his grip a little and my doula had to give him a ‘pep talk’ of sorts to get him back in the game. From then onward, he was there with a cool rag and shoulder massage to help me out. My doula said that this was likely transition, and that we were probably getting very close now. It would probably be too late for pain meds at this point, anyway.
By 12:45, my doula had me standing at the edge of the bed, leaning over and rocking my hips through contractions. After about ten minutes of this, I was struck with the overwhelming urge to bear down and push. All I could manage to say was, “Pressure!” and my body began to bear down on its own, causing me to grunt and pant against it. Then I felt a small gush of fluid with the pressure and I panicked. My doula went running out of the room to find a nurse, and all I could hear was, “She’s bearing down. Can we get a nurse for a check in here?”
5 minutes later, the cute charge nurse that I loved came jogging in and performed the last check, “Honey, you are almost done. You are 100% effaced, baby is down and engaged, and you have only a tiny lip of cervix left. However, I am pretty sure that when you start pushing, it will slip out of the way when baby comes down. I’ll call you 9.75cm. I’ll go get the doc!”
My doula was like, “You did it! We’re there!”
Another nurse came in and disconnected the IV line from the hep-lock, when I started to bear down again. She was like, “Don’t push until the doctor gets here.”
I was like, “Yeah right...I don’t think the baby is paying attention,” and continued as I felt the urges.
Nurse looked down, “Alright then, I can see the head.”
And went scrambling out of the room, yelling for the delivery team. Apparently, most women take a bit longer to get to this point than I did. A flock of nurses flooded the room. I had one watching the contraction machine, one watching the baby’s heart rate, two breaking down the bed for delivery, and one getting the supplies ready. There were two pediatric nurses – one with the nursery, one with the NICU – just in case he needed help breathing after delivery since he was over a month early. It was a mad house.
Then the doctor walked in. She wasn’t my doctor (since mine was out of town), but she was one of the OB’s in the practice that I was familiar with. She was already scrubbed up, took her seat at my feet and instructed me how best to push with the contractions. After the first push, she said, “You are pushing great, but you are giving me little pushes. I need big pushes if you want to get this baby out.”
I was exhausted, but that was a motivator. On the next contraction, I gave it literally everything I had. All I could feel was intense pressure and the ‘ring of fire’ most moms speak of. They told me to push through it, so I did. Two pushes later (only three contractions total) Milo David Honza was born at 1:34pm. He weighed 7 pounds even, and was 20 inches long. APGAR was 8/10, then 9/10.
I had a 1st degree tear, which the OB put in two stitches, only because it had torn a blood vessel and she wanted to control the bleeding. I had a couple of other ‘skid burns’ close to the urethra, but there wasn’t anything to stitch-up there. She said it was only because I pushed him out so quickly, not that he had a big head. They hung a bag of Pitocin to control the bleeding and help deliver the placenta, since ICP moms are at a far higher risk for post-partum hemorrhage. Placenta was delivered on its own, in one, complete piece – nothing retained.
He was so quiet when he came out, but his eyes were open and he was alert. I can thank the lack of drug intervention for that. They had to suction him a lot, since he was early and born so quickly that he wasn’t able to clear out his own mucus plugs in his nose and throat on his own. I was able to spend an hour with him and attempt to nurse before they took him to the nursery – husband in tow.
My liver enzymes were still elevated in the 48 hours after delivery, so we had to stay an extra night. They were still elevated upon discharge, but were down to normal at my 2-week check-up. The itching had stopped immediately after birth with no further incidence. My baby, however, was yellow.
Milo struggled with his bilirubin levels all through the first month of his life. We were discharged on Friday with a bilirubin of 8.5, but were back in the NICU by Saturday afternoon with a bilirubin level of 21. We spent 3 days there under a UV light, pushing IV fluids, and nursing around the clock to try to bring them down. We got the levels down to an 11 on Monday and were finally able to go back home.
For the next few weeks, it spiked back up to a 17 at his 2 week appointment, then dropped down to a 16 and 15 at consecutive weekly appointments. I refused to “pump and dump” for 24 hours to drop them rapidly, since the pediatrician said they would slowly come down on their own – calling it “breast milk jaundice”.
My OB said that the ICP was likely the reason for my late pregnancy blood pressure spikes, the premature rupture of membranes, and likely his fluctuations in bilirubin levels due to prematurity. Milo turned 4 months old on 12/19/14, and he is doing well. He weighed 10lb 10oz at his appointment at the end of October, & 13lb 2oz at his December appointment so he’s gaining weight like a champ.
I am very thankful we caught the ICP early enough to treat it and that my baby is now completely healthy and happy.
Overall, 1 to 2 pregnancies in 1000 is affected by ICP in the USA with Latina populations at 5.6%. Women carrying multiples, women who have had IVF treatment also appear to have a higher risk and those who have had previous liver damage or issues, or who are missing their gallbladder, may be more likely to develop it. The incidence of ICP also shows a striking geographical pattern, with a higher prevalence in Scandinavia and South America specifically Chile where the reported prevalence is as high as 15.6%. Mothers and sisters of patients are also at higher risk of developing the condition, proving that there is a definite genetic predisposition. There are more women diagnosed with Intrahepatic Cholestasis of Pregnancy (ICP) during the winter months. Although the reason for this is not clear, it suggests that there is an environmental trigger for the condition, such as a reduced exposure to sunlight or a change in diet.
ICP poses several risks that are of great concern. It is associated with an increased risk of stillbirth (intrauterine fetal demise) (after the 38 week mark), preterm labor (before the 37 weeks mark), fetal distress, respiratory distress, and meconium passage in utero. Cholestasis patients have a reduced ability to absorb fat-soluble vitamins (A,D, and K). This may lead to Vitamin K deficiency. There is a risk of maternal intra- or postpartum hemorrhage. Therefore sometimes doctors will prescribe oral Vitamin K. There have been reports of maternal hemorrhage, as well as stillbirth in utero, and postpartum due to ICP induced Vitamin K Deficiency.
Despite the possible outcomes of ICP, proper treatment provides a great degree of reduction in both fetal risk and maternal symptoms. With active management that include the two most important factors in the treatment are: reducing the bile acids in the bloodstream with the medicine Ursodeoxycholic Acid (Actigall) and delivering the mother as early as lung maturity will allow, often by 36-37 weeks gestation. In cases where bile acids do not respond to treatment, it may be necessary to deliver earlier than lung maturity to protect the child from the possibility of stillbirth. Unfortunately there is no cure for ICP, and most treatments are aimed at relieving the itch.
Ursodeoxycholic Acid (UDCA), also known as Actigall or Ursodiol or Urso is currently the front-line medication for the treatment of ICP. UDCA is a naturally occurring bile acid that improves liver function and helps reduce total bile acid concentration in the bloodstream.
I also have a 60-90% chance of developing ICP again in future pregnancies, as well as with use of any hormonal birth control. So condoms it is, until we decide to continue growing our family!
It saddens me that, out of the 20 doctors in my OB’s practice, only 2 of them were educated about ICP, and that was because they had only completed their residencies in the last 2 years, so it was fresh on their minds with the latest research. It seems that ICP is becoming more widely known, but the process is slow and most women have to self-diagnose before they are able to convince the OB’s they need treatment. I was thankful to have such a thorough OB who knew just what to do, as well as the resources of ItchyMoms!

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