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‘Don’t ignore an itch during pregnancy’ – my ICP story

ICP pregnancyIntrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder. It affects the normal flow of bile, which results in itching that can vary in severity and type. ICP is rare – in the US it affects between 1-2 in 1,000 pregnancies.

“I was 36 weeks pregnant with my second child. I didn’t feel very well, always exhausted and itchy, but I thought nothing of it, after all I already had an 18-month-old boy with boundless energy.

I told myself baby number two was always different because you can’t put your feet up whenever you want. Then I went for my obstetrician appointment.

This appointment was different because my husband was able to come with me.  We sat down and my doctor asked (as he always did): “How are you feeling?”. I gave my usual response: “Good, except for the usual pregnancy ailments”.  My husband however told the obstetrician that I wasn’t sleeping, was always exhausted, and was itchy all over.

Here started my Intrahepatic Cholestasis of Pregnancy (ICP) journey.

I was immediately admitted to the hospital as an outpatient, and blood tests were ordered. I spent eight hours at the hospital that day, as my and my baby’s health were thoroughly checked.

The next week was one of the hardest I have ever been through. I didn’t understand what was happening, I had no idea what ICP was or how it would affect the little girl I was carrying, and on top of this I had to hold it together for my son.

I googled ICP and what I found sent shivers down my spine. ICP can result in premature delivery, fetal distress and stillbirth. I didn’t want my baby to die, so I focused on her movement. I spent almost every day in hospital, only going home at night. Then on 22 June the doctors told me that I needed to be induced.

At 37 weeks and 2 days my beautiful little girl Gemma was born. The itching stopped, and I finally got some sleep.

I felt so lucky. Before my diagnosis I had never heard of ICP, and if my husband hadn’t been at my obstetrician appointment I would have continued to put my symptoms down to general pregnancy issues.

Three years later I had another ICP baby (ICP carries a 90 per cent chance of reoccurring). This time I was prepared, and it was therefore a very different experience. I found a website called “Itchy Moms” that told me everything I needed to know about the condition. I was well informed and knew the symptoms I was looking for. My doctor and I had a plan in place, and in my mind my baby was always being delivered at 37 weeks.

My second daughter is now a beautiful, happy two-year-old.

I have been lucky, but there are mums out there who haven’t been. They have lost their babies because of ICP. I urge you that if you have a partner, friend or even an acquaintance that is experiencing an itch during pregnancy, let them know to tell their doctor.

Don’t ignore an itch during pregnancy, it can kill.”


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This information is not intended to be  a substitute for professional medical advice. Please seek the advice of your doctor if you have any questions or concerns.

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Amanda Ley

About Amanda Ley

Amanda Ley is 40-year-old mother of three beautiful children; Toby (6), Gemma (5) and Zoe (2). She has just moved back to Sydney from Brisbane and now resides in Willoughby. ...

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14 comments so far -

  1. I was pregnant with my daughter (second pregnancy, the first was totally normal) when I started feeling itchy all over at 34 weeks. I didn’t have any rash or anything obviously wrong with me, but I couldn’t sleep and felt like I was going to lose my mind, so I did a Google search online and found out about ICP that way. I called my midwife, and she had me go in for blood tests the same day, which confirmed I had high bile acid levels. I was induced at 37 weeks, and my daughter was born totally healthy after 5 hours of active labour.

    The itchiness did go away immediately after her birth, but I find that I occasionally still experience *some* (much less intense) itching at certain points in my menstrual cycle. 2 years later. Has anyone else experienced this? I brought it up once to my family doctor, but he didn’t seem to think it was a big deal. Maybe it’s all in my mind?

  2. Hi im 29weeks pregnant and have really itchy legs and hands and tummy but legs are the worst. Ive been to my gp who gave me blood test and steroid cream. The blood test came back fine and doctor put it down to me having PUPS pregnancy. But hear u ng these stories it sounds so similar what is the difference between ICP? Should i be going back to the doctor? He did say my liver was a little bit high but nothing to worry about

    • Hi Di. We’re not medical professionals here but I would say that it couldn’t hurt to raise this with your doctor to make sure that he is aware of it. Or else get a second opinion. It is better to be tested and find there’s nothing wrong than NOT be tested and find there IS something wrong. All the best xx

  3. I had no idea there was an awareness week. I have had four ICP pregnancies. My third pregnancy was the absolute worst for the itch and just… feel strung out from the lack of sleep and the ridiculous itching. I remember brushing my hair and next thing I know I’m brushing my hands and feet trying to make the itch stop. Or forks, or essentialy any sharp object lol.

    I hope awareness of this condition rises not just for the general public but in medical professionals as well. I had to fight bitterly to be taken seriously with my ICP symptoms and had to demand testing for it. I’m so glad I persisted and found out. Because of that knowledge I knew fetal movement was key for monitoring my little ones well being. Out of the four ICP pregnancies, my fifth child’s birth was the only one that was an emergency induction because he stopped moving (my bile acids weren’t extremely elevated prior to that, then they spiked and he stopped moving). He was born healthy and hasn’t stopped moving in the four years since. My other 3 ICP deliveries happened in the 37th week and we’re scheduled.

    • Hi Dustie, Thanks for your comment and glad to hear that you’re little boy was born healthy! You’re right … we do need to raise awareness about this condition for medical professionals as well as the general public. Thanks again for doing your part in this. xx

  4. I was living in Asia and had a great pregnancy but two weeks before my due date, some itchy spots appeared on my ankles which I dismissed as mosquito bites. 2 days later, they were still there but I noticed a few more on my shins. Wow they were itchy and they didn’t seem to ease up. Over the course of the next week the bites turned into welts and spread to the front of my legs, up my bulging belly, down my back and behind my legs, almost everywhere except my face. It was the most excruciating and unrelenting itchiness I have ever felt. 10 times worse than chicken pox. I tried every potion, lotion and cream under the sun, antihistamines, cold compresses, cold showers, cold baths and absolutely nothing would alleviate the itching. I was getting 1-2 hours of sleep per night, usually after a cold shower and then dousing myself in cold Pinetarsal (it was also the middle of winter). Sleep deprivation is the worst form of torture. Sleep deprivation plus itchiness is enough to send you off a balcony head first. After 5 days of this unknown condition that was about to send me to the mental asylum, I finally took myself to the clinic at our nearby hospital. The Doctor prescribed stronger antihistamines and cortisone cream and diagnosed me with some sort of unknown allergic reaction. The meds did bugger all. Another 2 days and I finally went to the Oby/Gyn who diagnosed me with ICP and I was also told the only remedy was to deliver the baby and the itching be alleviated once the placenta was removed. I was also told it could pose a risk to my unborn baby and for both of these reasons; an induction the following week looked highly likely – blood tests then confirmed her prognosis. It suddenly occurred to me an entire week had gone by and I was completely sleep deprived, my blood pressure was now high and I was intensely strung out. So much for a relaxing maternity leave. What followed was a failed 1st induction, then a 2nd induction which led to a 24 hour labour, my baby ending up in distress and finally delivery via emergency-c and the baby spending a few days in NICU before I was even able to hold him. Overall Let’s just say…my birth didn’t go to plan and I’ve suffered from PTS syndrome as a result of the trauma suffered from the ICP and delivery. I’m so glad there is more awareness for ICP; I had never heard of it and something that wasn’t covered in my antenatal classes nor any reading materials while pregnant. Perhaps living in a foreign country impacted things. I really hope your article and the ICP awareness week will help people to identify the symptoms and be informed before going through a similar experience that I did.

    • Hi Claire. Thanks for sharing your story with us. What a terrible experience for you – exactly the reason we hope to share some information on the condition. I’ve had three children (plus I work on a site about pregnancy and parenting!) and had not heard of this until recently. Take care. All the best xx

  5. I was diagnosed with ICP at 33 weeks. I had read about it previously in a book about pregnancies and what to expect. If not at all for this book it would not have been my mind at all.

    33 weeks, I started itching at night on my feet and hands and it was more than a normal itch. It continued for a few nights and I knew it right then and there that it was ICP. I convinced my GP to get my blood tests done and she was more or less convinced I was over reacting. My tests came back fine apparently. When I spoke to my OB I had convinced him this itching was not normal as I was a complete mess from no sleep. My OB rang my GP and asked to double check the test results. I had to re-do the test as it seems the original test was not looking for the correct marker. I was right and it if was not for my OB they would have ignored me!

    Weekly blood tests had to be done and was induced at exactly 37 weeks. My son is almost 3 today.

    I am now 28 weeks into my second pregnancy and still worried it will return.

    • Hi Marie, Thanks for sharing your story with us. Is so lucky that you already knew about ICP and talked to your doctor about it. We hope that with some awareness others will do as you have done. Hopefully you won’t have to go through it again. All the best with the rest of your pregnancy xx

  6. I had ICP with my second baby. I was diagnosed at 31 weeks and with medication was able to get through until I was induced at 37+5. It was scary at the start, I was prepped for a 32 week delivery, just in case they couldn’t get my liver levels under control, but thankfully they managed to get them back to within normal range. I can tell you that I was well and truly sick of the hospital after twice weekly ctg and blood tests for almost 7 weeks! At 37+4, I went in for a blood test and my levels had shot back up again, I was induced the next day. My little girl is now 8 weeks and I’m hoping that my next blood test will show normal range blood levels again. It’s a pretty horrible pregnancy complication, but if it’s diagnosed before the blood levels get too high, the chances are good :).

  7. I had ICP with my second baby. Excruciating itching under the skin especially on my feet and hands. It started in full force at 37 weeks though I later realised I’d had mild symptoms and exhaustion for many weeks before (which I had dismissed as usual pregnancy tiredness and stretching skin etc).

    Unable to sleep from the itching, I googled symptoms at 2am and found myself in hospital being induced a mere few hours later! It doesn’t always recur as I was fine for my third pregnancy.

    The bottom line – don’t ignore symptoms (itch, lethargy, orange wee etc). It never hurts to get checked if you have concerns. It can be extremely dangerous for the baby but with prompt action is manageable. Also I bounced straight back after the birth so once the little one is born, the symptoms were gone same day! Don’t be scared – be informed.

    • Thanks for your comment – I think you hit the nail on the head when you say ‘don’t be scared – be informed’. We are finding that it is sometimes a fine line between informing our readers of conditions like this and frightening them! Of course though it is better to ask the question and to find out that you don’t have something than to find out you have something you haven’t heard of when it is too late. xx

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