Case study

Kelly’s midwife noticed she was scratching during a routine appointment in her second pregnancy, and knew it could be a sign of ICP.

‘‘I was seeing my midwife due to reduced movements, and she saw I was scratching so much that I’d made my arms bleed. Looking back, I’d been itchy for a few weeks by then, but I’d put it down to something simple like a reaction to my washing powder.’

‘I was seeing my midwife due to reduced movements, and she saw I was scratching so much that I’d made my arms bleed. Looking back, I’d been itchy for a few weeks by then, but I’d put it down to something simple like a reaction to my washing powder.’

Thankfully Kelly’s midwife recognised the itch as being a potential indicator of ICP and asked Kelly if she was happy to have a blood test done there and then.

‘She asked me to wait for the results to come back and when they did – with bile acids of around 300 – I was immediately sent into hospital. It was really scary.

‘I was in total shock. I’d never heard of the condition before and the consultants were saying they’d never seen levels as high as mine. They didn’t seem to know what to do with me.’

‘Don’t be afraid to stand up for what you believe and know is right. And reach out for support.’

Kelly was 30 weeks by this point and asked to come in regularly for monitoring and bloods. But with such high levels, the doctors seemed unsure about how to proceed.

‘I had one doctor saying how high my levels were and how serious it was. And then another one would come in and say it was fine to wait for a few days. It was totally mind baffling.

‘I didn’t want to have the baby too soon but I felt I was putting him at risk keeping him in. I went into pre-term labour twice and they stopped it both times because they decided it was too early. The doctors were always convinced that there had to be more to it as my levels were so high, so they kept testing me for other things. It was a total nightmare.’

In the end, Kelly had had enough and was worried for her baby’s safety. Finding it difficult to get clear answers about when her baby should be born, she got in touch with ICP Support. The charity helped her to advocate for a c-section at 34 weeks.

‘My son was barely moving by this point so I know it was the best decision and I will be forever grateful to Jenny and the charity.’

Kelly’s son was born safely at 34 weeks, but sadly has developed his own health issues since, including problems to do with his bowel and bladder.

‘We don’t know if there’s a link – there’s not enough research into ICP and the possible future complications for children. That’s why the work ICP Support is doing is so important. We need to keep raising money to support more research into ICP, including the risk of severely high bile acids on the child and mother, post pregnancy.’

Kelly herself has been involved in several fundraisers. Her biggest wish is a clearer pathway for women experiencing the condition.

‘My son was barely moving by this point so I know it was the best decision and I will be forever grateful to Jenny and the charity.’

‘My experience is that my doctors, although they’d heard of it, were completely at sea about what to do for the best – particularly in my case where my levels were so high. I hope we can get to a place where every hospital has a clear pathway of what needs to be done at what stage, so that every woman knows that their baby and themselves are totally looked after, no matter how severely they experience this.

‘And if you’re going through it now, my advice is to always, always advocate for yourself. Don’t be afraid to stand up for what you believe and know is right. And reach out for support. I truly believe if I hadn’t got in touch with ICP Support, the outcome in my pregnancy could have been so different. I will be forever grateful for everything they did for me and are doing for all the women going through this right now.’

If this story resonates with you because you have experienced a stillbirth, you are very welcome to join our Facebook Precious Memories Group or our general ICP Support Facebook Group. You might also like to call the ICP Support helpline to talk things through.