By Jo Marshall
Rebecca Wilson had intrahepatic cholestasis of pregnancy (ICP) in both of her pregnancies. Her daughter Evie was born safely at 37 weeks.
‘I didn’t know anything about ICP until I got it the first time round. I started itching, not too badly, but enough to mention it to the midwife when she asked me about itching at a routine appointment.
‘I had blood tests and was called back the next day to say that they were high enough to diagnose me but not super high.
‘With Evie I got conflicting information from different doctors. Some seemed to take ICP very seriously and some didn’t. Even when my bile acid levels went up to 153, one doctor told me that didn’t matter.’
Rebecca decided to do her own research online to arm herself with as much information as she could.
‘Most of it seemed to focus on the risk of stillbirth, which terrified me. I was having weekly monitoring (blood tests and CTG) by then, and was booked in for an induction at 38 weeks. But I became hyper-stimulated and the induction was stopped. Evie was distressed and I ended up with a grade 1 emergency c-section under general anaesthetic, but she was born healthy and we went home a couple of days later.’
‘With my second I was a bit more relaxed as Evie had been born safely so I just assumed Isaak would be ok as well.’
18 months on, when Rebecca and her partner were ready for a second child, they knew that it was likely she would develop ICP again.
‘I just accepted that and we went ahead. And as soon as I got the slightest itch, I asked for a blood test which confirmed I had ICP again.
‘This time I had a consultant who specialised in gestational diabetes, as I had that too, but she was very helpful. We were booked in for a planned c-section between 37 and 38 weeks. But one morning (during my 33rd week) I realised I hadn’t felt him move and went to get checked. They couldn’t find a heartbeat and a scan showed that sadly he had died.’
Rebecca went into labour naturally and gave birth to her son Isaak just after midnight the next day. The post mortem results came back and showed that, in the absence of any other explanation, their baby had died as a result of ICP.
‘I don’t want to scare people. What happened to us is still relatively rare. But it does happen. And it happened to us.’
‘It was then that I got in touch with ICP Support – after we lost Isaak. I was desperate for information and answers about what had happened, so I emailed Jenny Chambers ahead of getting the results to ask whether I should be asking the doctors any particular questions. She emailed back really quickly and has been so helpful ever since.
‘Losing my little boy was, of course, devastating. Heartbroken doesn’t even come close and I know that our lives will never be the same.
‘But I can’t fault the support I’ve had since. My consultant has been very willing to learn all she can from what happened to Isaak. She’s gone out of her way to be there for me. And it’s helped me a lot being part of the ICP Support Facebook group, which is full of useful information, and usually if I have a question someone has already asked it and been given an answer. I’m on the ICP Precious Memories group as well.
‘I don’t want to scare people. What happened to us is still relatively rare. But it does happen. And it happened to us.
‘My advice, if your bile acids go over 100, is to push for early induction. Unfortunately not all medical professionals know about the latest research. So arm yourself with the facts. Join the Facebook group.
‘The team caring for me have been more than happy to take on the new information I’ve shared with them. It didn’t help to save Isaak. But it might help to save another baby.’
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.