Cholestasis Of Pregnancy And The Real Risk Of Stillbirth

newborn in hospital bed

When I was 33 weeks pregnant, I began to itch up and down my legs, down my arms, on my stomach, and on my palms. I itched so badly that I made myself bleed from scratching so much. Nothing would stop the itch. I would get in the shower for relief, but the itch would return shortly after, barely giving me any reprieve at all.

How Serious Can Cholestasis Be?

I began to search online, like every pregnant woman does when anything weird happens with her body, and I found two possible causes: either PUPPP (pruritic urticarial papules and plaques during pregnancy), which is largely harmless, and intrahepatic cholestasis of pregnancy (ICP), which can lead to late-term stillbirth in up to 15% of cases according to some studies. I made a doctor’s appointment immediately.

The risk of stillbirth alone is chilling to any pregnant woman. We had been worried about telling people early on because of the risk of miscarriage, but I was not prepared to deal with the high stillbirth risk the last month of pregnancy. Even avoiding stillbirth, other complications can occur, generally in the respiratory system of the infant, where they often develop respiratory distress syndrome in the womb from the accumulation of liver enzymes and bile acids and by aspirating meconium. I also experienced an enlarged liver that caused upper quadrant pain directly under my ribs.

Causes Of Cholestasis

The primary issue in ICP is the accumulation of liver enzymes and bile acids, and the itch occurs due to these molecules accumulating under the skin. This happens because your cells are no longer properly transporting these byproducts of toxin processing out of the liver and gall bladder. The proteins that usually perform this transport function experience a structural change due to your pregnancy hormones that renders them useless. Once your hormone levels have returned to normal, this transport also begins to function normally again.

Cholestasis can occur outside of pregnancy, and in those cases, the condition is not reversible. In pregnancy though, genetics have also been linked to your likelihood of developing the condition, with populations from Chile and Scandinavia being overrepresented (my family is from Denmark) and an occurrence in the family increasing your probability of the developing the disease.

Demand To Be Tested

When I went to the doctor, he immediately assumed that I had PUPPP and told me not to worry. He would go ahead and test my liver enzymes and bile acids anyway, just to make sure. In our healthcare system, we often receive our test results online before our scheduled appointments. In my case, I saw my levels first, and they were off the charts. The level of bile acids in my blood stream were 8x higher than normal levels, and with levels that high, all known case studies reported distress in the infant.

I could not get in for an appointment for 5 days because a weekend happened to fall between when the test results came in and my next appointment. Given that I have a PhD in genetics, which probably makes me one of the most annoying patients to doctors ever, I found that you can take ursodeoxycholic acid, which should help alleviate the symptoms and lower the acid levels. I got on the phone and made them look at my lab results, and they called in a prescription right away. My appointment that coming Tuesday during my 35th week would focus on monitoring fetal distress and taking stress tests.

This is all to say that if you know something is wrong, demand to be tested. Sometimes it is important to take your health into your own hands.

What The Test Means And Treatment

Normal bile acid levels for pregnant women are now considered to be below 10 µmol/L, which only recently changed from 20 µmol/L a little over a year ago. Levels above 10 µmol/L are considered a diagnosis of cholestasis and require treatment and close monitoring for fetal distress through frequent appointments to detect fetal movement. My bile acid level was 80 µmol/L. Case studies have shown that fetal distress, including respiratory distress syndrome, meconium aspiration, and stillbirth, can occur at levels between 20-40 µmol/L, but fetal distress occurred in all cases with levels above 40 µmol/L.

Ursodeoxycholic acid (urso) can be used to lower these bile acid levels, although it actually did not work for me, probably because my levels were too high for it to make too much of a difference. Fetal outcome has not been shown to be adversely affected by urso, and nausea and diarrhea have been seen in a small number of expectant mothers. Urso itself is a bile acid that naturally occurs and is not toxic, in contrast to the bile acids that it replaces in the bloodstream.

When The Only Option Is C-section Before 36 Weeks

For confirmed cases of cholestasis, the recommended course of action is to deliver at 36 weeks of gestation. Early delivery is the best case for survival for the infant, and by 36 weeks of gestation, the infant’s lungs are mature enough to mitigate some of the risks of delivering early. When I went in for my appointment that Tuesday in my 35th week, they performed a series of stress tests on the fetus and scheduled me for a C-section the following week (but I did not make it that long).

How It Ended For Me

At about 4 AM on the Wednesday morning following my appointment, I started having contractions, although I did not realize that’s what they were until around noon when they started coming faster and more intensely. By the time they were less than 5 minutes apart, I was at the hospital where my water broke, but I was not dilated. By 7 pm, he was out by C-section at 35 weeks. He did aspirate meconium and have some respiratory distress, and we ended up with a 10-day stay in the NICU. In addition, I had HELPP, which I’ll talk about at a later date.

Given the risks to him due to the cholestasis and the risks to me (HELPP syndrome), I think he really did come at the right time. I went into labor likely due to the stress of both conditions on my body, and he is now thriving in the 85th weight percentile. You can’t even tell he was a preemie. It was a scary time. We learned a lot and thankfully had the best possible outcome. The condition does reoccur in future pregnancies but does not always, but at least now we’d know what to look out for.

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24 Replies to “Cholestasis Of Pregnancy And The Real Risk Of Stillbirth”

  1. Fab post to raise awareness! I was threatened with this is both pregnancies, I apparently just get really itchy but I nearly didnt mention it to my midwife the first time as I didn’t know about OC and thought it couldn’t be anything serious! How wrong I was! So glad you had a good outcome #coolmumclub x

    1. Thanks! It is really scary!

  2. Oh my goodness I honestly had no idea about Cholestasis, how scary. He really did come at the right time given the risks. Thanks for sharing this important post on #coolmumclub xoxo
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  3. Such an important and informative post – shared shared shared!
    #coolmumclub

    1. Thank you!

  4. OC can often be overlooked if not seen by the right HCP. I’m guessing you are in the US, over in the UK midwives are supposed to discuss symptoms of OC along with other probs with pregnant women during their antenatal appointments. Any kind kind of generalised itching during pregnancy and we take blood samples. At our trust we ask for them to be processed as urgent too. Glad you had a good outcome x
    #CoolMumClub
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  5. I also had this condition with my pregnancies. The first one, the consultant almost didn’t agree to induce me early as she was looking at blood results for the wrong date. When I corrected her about the last date I had bloods done, she found the correct ones and in an instant, she went from fobbing me off to telling me i’d be induced six days later, at 37 weeks exactly. My levels were insanely high. We spent 4 days in, only 2 on NICU, thank goodness. My second was better and worse, it came on earlier but we knew what to expect and they took good care of me. We were induced again at 37 and out the same day with no issues. I often think how different my life could be though, none of my family really know what was at risk. Thank you for raising awareness xx #stayclassymama

    1. For how serious it is, it’s not something many people tell you about, and I’ve seen multiple stories of women having to convince their medical professionals that something is wrong. I just hope writing about it more will help at least somewhat in raising awareness. Thanks for stopping by!

  6. So important. I read through and realised I was holding my breath! Thank you for raising awareness #pocolo

    1. Thank you!

  7. Wow this is so useful! I had no idea about this, but I’m sure this will be really helpful for moms who are experiencing the same thing. I’m so sorry you had to go through this I can only imagine how difficult it must have been, really happy that everything turned out okay! Thanks so much for sharing with #StayClassyMama!
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  8. oh bless you never heard of it but so so scary. I had a preemie too and youd never guess xx
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  9. This must have been so scary at the time. I remember reading everything when I was pregnant! Doctor Google was my best friend but it just goes to show it’s best to raise your concerns! Very informative post #stayclassymama
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  10. I am so glad you demanded your right to healthcare and were persistent with follow up care instead of waiting for the appointment for 5 days! I shudder to think what outcome could happen if you hadn’t done that. #GlobalBlogging

  11. Had never heard of this, so glad you wrote about it, will be so useful to those who are going through something similar. Sharing.
    #GlobalBlogging
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    1. Thank you!

  12. I’m back with #DreamTeam
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  13. Wow, thanks for sharing this. I’d vaguely heard that it was important to get itching checked in pregnancy but I had no idea it could be so serious. Glad it all worked out ok for you in the end #DreamTeam
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  14. Thank you so much for sharing; I knew about the risks but only after losing my own son (although not as a result of cholestasis.)
    It’s so important to raise awareness so that women feel empowered to seek the best possible care. Losing your child is devastating, so anything which helps raise awareness of risks and could help to reduce the number of families who go through this trauma is AMAZING. #dreamteam

  15. Such an informative post – and definitely something we need to be talking about! I’m so happy that you took your symptoms seriously and advocated for yourself (and your little guy) when it was most needed! Thanks for the awesome read <3

    1. Thank you!

  16. Thank goodness you were both ok! What an experience to go through, and good on you for sharing something so important. I completely agree when you say that sometimes you have to demand to be seen. Lot’s of things can get overlooked if you don’t make a stand if you think something might not be right. Of course having a phd helps too 🙂 #DreamTeam x
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  17. I have never heard of this before. What a frightening time this must of been for you all! It’s so important that we feel the freedom to speak up when we have a concern about something. I think all too often we keep quiet because we think it’s nothing. Good on you for speaking up! A very imformative post! Thanks for sharing! #globalblogging

  18. Im so glad your story had a postive outcome. This iant something ive heard of before so its great youre raising awareness. #dreamteam.
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