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My Experience of ICP (Intrahepatic Cholestasis of Pregnancy aka Obstetric Cholestasis) and 5 Charities and Support Groups to Contact

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Guest Post: Danielle at https://www.instagram.com/_ourlittletrio_/

ICP (Intrahepatic Cholestasis of Pregnancy aka Obstetric Cholestasis), so what’s the itch?

You’d be forgiven if your first thought reading this was ‘what on earth is ICP, I’ve never heard of it.’ That was very much my reaction whilst sitting in the Maternity Assessment Unit (MAU) early on a July Sunday morning. 

So just to clarify, Intrahepatic Cholestasis of Pregnancy (ICP (aka Obstetric Cholestasis) is a potentially serious but uncommon liver condition that affects 1 in 140 pregnant women. With ICP, the bile acids that usually flow from your liver don’t flow properly and start to build up in your body instead. 

Remember your Mama Academy pregnancy wallet that you should have been given to hold all your important notes? Well it really is more than just a wallet for popping things in and the advice on it has helped many women with concerns throughout their pregnancies.  

Towards the bottom of the ‘call your maternity unit’ section you will see the symptom ‘itching (particularly hands or feet).’  This is mentioned as Itching is the most common symptom of ICP and medical advice is required quickly to treat the problem as soon as possible. 

March 2020 – The month our world turned upside down and then flipped again!

We found out we were expecting early in March 2020. We were so pleased, all of a sudden our entire world had changed for the better. In and amongst all the joy, I was anxious – I was about to be a first-time mum and everything seemed to be on a downward trajectory due to the Covid situation. 

Then it happened, we went into lockdown. Pregnant women were seen as an ‘at risk group’ and all of a sudden our world had flipped again.  I found myself having to have conversations with my work place far sooner than I would have liked to about me being pregnant; being anxious I had planned to wait until the 12-week mark. Not that I had anything to worry about, my employers were great but I was under strict instruction not to attend the office. Working from home quickly became the new normal.

I was having a breeze of a pregnancy. Ok, I was tired and my back ached but I didn’t have the morning sickness or the strange cravings that other people spoke or complained about. I was just moving (well, waddling) along nicely. 

Lockdown 2020 – Summer of heat and storms.

Of course with the country being in lockdown the British weather decided to come in all its glory, the heat was matched only by the impressive thunderstorms. 

It was July when things changed for me, suddenly I had this itch that wouldn’t go away no matter what I tried. When it started on my neck and back, I brushed it off as it being my skin changing because of pregnancy and figured it would go away as quickly as it came about. 

The itch didn’t go away. It got progressively more intense and before I knew it, it was so severe that I couldn’t sleep at night. I was a mess. I was tired from being pregnant, tired from being itchy, tired from not sleeping. I got a telephone appointment with the GP who, from our conversation, diagnosed heat rash (we were finally having a good summer after all). I was prescribed a cream and unfortunately that didn’t help. 

happy man with hot drink looking at wife
Photo by Amina Filkins on Pexels.com

26 July 2020 – A date I won’t forget.

More days passed and the itching didn’t ease up. By now, I had certain expectations of how the baby would move and it was July 26 that I had my first experience of reduced fetal movement. I panicked, as any expectant mother would so my husband phoned 111 (I was far too emotional at this point.) 

We were referred to our local MAU who checked the baby and carried out blood tests and then sent me on my way as it was the middle of the night. They reassured me that the baby sounded fine on the monitor and there was nothing else that could be done until my blood results came back. 

We got the call the following morning that I had to go back as they needed to discuss my results. This is a phrase that I’m sure panics most people because surely if it was good news they would just tell you over the phone?

My Intrahepatic Cholestasis of Pregnancy (ICP) Diagnosis

I’m not a doctor and this information was relayed to me after one of the longest nights I had ever experienced and because of the ongoing Covid restrictions I was alone. I was told that my fasting bile acids came back at 38.5. Now, depending on which NHS trust you fall under they may use different levels but I understand its generally accepted that levels over 14 are high enough to diagnose ICP. 

In addition to this, my liver levels that I understood should sit around 60 were at 660. They eventually peaked at 878. 

Based on all of this, I was diagnosed (pending further checks) with ICP. 

Edit since original publishing… ICP Support – the largest ICP research-based charity in the world

Since this blog post was published, the swan effect mum was approached by ICP Support (http://www.icpsupport.org). ICP Support are the largest ICP research-based charity in the world and they wanted the following statement to be added so that any readers were provided with the right information. Of course, we are thrilled to have these facts and are thankful for them reaching out and offering their advice, guidance and support:

This is an issue that we have been battling against for the past 30 years. It is incredibly important that bile acid blood tests should be non-fasting. This is because your bile acids fluctuate throughout the day naturally (whether or not you have ICP) and they are highest after eating. ICP is managed by your bile acid level and we want to know how high they can become. If you fast before a bile acid test, you won’t get a true reflection of your peak bile acid level and you can in fact miss a diagnosis of ICP if fasting bile acids are taken. We have conducted research on this which was published last year so that we can provide scientific evidence that shows this is the case and we often recommend that women show this paper to their health professionals if they insist on fasting bile acid tests. (Here is a link to the paper: https://obgyn.onlinelibrary.wiley.com/doi/10.1111/1471-0528.16669

I was given a leaflet…

It may have just been a bit of bad luck on my end but the person who diagnosed me confessed that she didn’t know enough about the condition to discuss it because it is uncommon but she did know that ‘all of the worst things that I am imagining could happen, could actually happen.’ With that, she handed me a leaflet and left.

I had to let that sink in. There I was – pregnant for the first time, sat alone in hospital being told that everything could go wrong. I reviewed the leaflet, there it was in black and white, ICP can lead to an increased risk of stillbirth. Mentally, this was huge thing for me to not only try and overcome but also process so that I could pick up the phone and repeat the conversation with my husband.

I was admitted to the ward and to start with having blood tests every 6 hours, I honestly felt like a walking pin cushion. On top of this I had X-rays, MRI scans and liver scans. All of the other checks for autoimmune diseases came back negative, ICP was confirmed as my diagnosis and all of a sudden an illness that I knew nothing about became my reality.

people woman sitting technology
Photo by MART PRODUCTION on Pexels.com

The big 37 weeks

After being diagnosed, I had regular checks and monitoring. Weekly day care appointments on MAU and fortnightly appointments with my consultant. I was fortunate enough to have a lovely consultant who saw me for each and every one of those appointments. 

In addition to the scheduled appointments, I was told to keep a low threshold for my concern and to attend MAU if I felt like I needed to. Some weeks it felt like I was stuck in a revolving door of trips in and out of the hospital all the while with my husband sat in the car park. 

I had been advised that it was likely I would be induced at 37 weeks, because the risks associated with ICP seem to increase beyond this (although research data is limited). I didn’t even know what being induced involved and it definitely wasn’t part of what I imagined having a baby would be like. 

As 37 weeks drew closer, my levels started to normalise. Seemingly, the medication I had been taking was working and my consultant was no longer recommending an induction at 37 weeks.

This felt like such a huge milestone and I honestly thought I would be so happy to reach it. Instead, the only thing I could think about was the possibility of the risks increasing. My consultant took the time to speak to me at length about why delaying the induction to 39 weeks was better for both the baby and myself and I agreed with him. Despite this, I spent the rest of my pregnancy concerned.

38 plus 4 pregnant

Turns out my little one didn’t want to wait until 39 weeks either! I was so relieved that he arrived spontaneously and safely, I was so relieved that all the worry ICP had caused me was finally over and the itch had finally stopped. Now, the only worry I have is the usual new mum worry – ‘is my baby breathing?’ ‘Is my baby ok?’ ‘Is my baby eating enough?’ ‘Is my baby meeting his milestones?’

ICP Support – The community I never knew I needed. 

I reached out to ICP support via social media – something that I had never done before. I just needed to speak to someone who had been through what I was going through. I am so pleased I did. I was welcomed to the group and offered advice and information about the latest research into ICP. 

I couldn’t recommend this charity enough and if you find yourself in the same situation as I was in I would urge you to reach out to them as well. You can find the link to the ICT Support Facebook Group HERE.

Please, trust your instincts.

If you find that you are experiencing any symptoms or have any concerns, then please trust your instincts and seek help. 

No one wants to think about the possibility of things going wrong during what should be one of the happiest times of your life. I do feel like there is a lot of taboo that still exists around talking about pregnancy as anything other than a perfect wholesome experience but the only way to raise awareness of these uncommon conditions is to talk about them.

Please don’t ever feel like you will be in the way if you attend your local MAU and everything is ok. I attended a lot and trust me, your unit would rather you attend and everything be ok than not attend and something to happen.

Thank you for reading. Here’s a little bit about me…

I’m Danielle, a young professional from the midlands. I’m a daughter, a wife, a pet mum to a little miniature Dachshund and recently a new mum to a wonderful baby boy. My husband, Daniel, and I are trying to navigate our way through married life as parents and have set up our little family Instagram @_ourlittletrio_ 

Intrahepatic Cholestasis Of Pregnancy

Hear more from Dani and her journey with ICP here…

Listen to Dani’s ICP journey on The Swan Effect Mum’s Coffee and Chat Podcast HERE

Listen to the podcast here….

Or you can watch the unedited video of the podcast over on The Swan Effect Mum’s YouTube Channel HERE

Help and support available for ICP

Should you be experiencing any of the symptoms that Danielle has mentioned in her post, then please seek medical advice as soon as you can. Below you can find a list of charities and websites connected with Intrahepatic Cholestasis of Pregnancy:

  1. NHS Website: HERE
  2. Tommy’s Website: HERE
  3. British Liver Trust Website: HERE
  4. NCT Website: HERE
  5. ICP Support Website: HERE

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