By Jo Marshall
Carrie Quirk had to fight her corner with medical professionals, who were referring to outdated information on how to treat women with intrahepatic cholestasis of pregnancy (ICP).
‘The worst part of having ICP for me was having a consultant who wasn’t aware of the latest research.’
‘I was diagnosed at around 33 weeks, after speaking to my midwife about my itchy legs. My first bile acid test came back at 9.4, so I was just under the threshold for it, but the next one a few days later was 10.2, so that was enough to give me the diagnosis.’
Carrie was put onto the drug Urso and told she needed to have weekly bloods to keep an eye on her levels. She was also referred to a consultant and it was going to those appointments that she found the most challenging part of her experience.
‘I’d started to do some research into the condition to learn all I could. Knowledge is power and I always like to be well informed.
‘The information I’d gleaned made me feel fairly confident about my low levels and the low risk of stillbirth, as long as they stayed below 100. But my consultant only had access to the RCOG guidelines, which were outdated, and said that all women with ICP should be induced at 37 weeks. It was very frustrating because he wouldn’t listen to me.’
Carrie came across ICP Support quite late into her research but describes it as a game-changer.
‘I had found the Lancet paper (one of the latest studies into ICP) and Jenny Chambers’ details off the back of this. I contacted her to check my understanding of my low bile acid levels – and that gave me a lot of confidence in myself and the treatment I wanted and didn’t want for the remainder of my pregnancy, including my birth.’
Although her doctors were pushing for a 37 week induction, Carrie wanted to hold out for a birth at as close to 40 weeks as possible, which the latest research indicates is safe for women whose levels stay below 100.
‘After talking to Jenny, and confirming what I thought after reading the research, I suddenly felt like I had a leg to stand on with my consultant, and I could be more confident in my decisions. I eventually refused to see him and wish I’d done it sooner. Thankfully, my second consultant was much more understanding!’
‘It’s important to understand what bile acid levels mean for you and baby, so you can make informed decisions along the way.’
Carrie’s levels stayed below 60 and she was able to hold out to have the water birth she wanted.
‘Despite the recommendations for continuous monitoring, I wanted to give birth in water, so I declined it. My son’s birth was really positive and he was born completely healthy.’
Carrie is keen to stress the importance of being knowledgeable about ICP, so that you can advocate for yourself if you need to.
‘Learn about the condition, make your plans and gather your facts. Be proactive. You are in control of your body and your baby’s birth. It’s important to understand what bile acid levels mean for you and baby, and understand the risks associated with increasing levels, so you can make informed decisions along the way. Don’t forget, even if you have ICP, you can still have a positive pregnancy and you can still have a positive birth.’
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.