By Jo Marshall
Hollie dealt with her ICP with hardly any support or accurate information in her first pregnancy. But finding ICP Support second time around changed all that.
‘When I first started itching, I turned to Google (as a lot of us do) and searched to find anything I could about “skin itching in pregnancy”.
‘I was reassured that, although there was a serious condition that caused this, it was apparently “extremely rare”. I found lots of websites that told me the itching would only be on my hands and feet, and most likely occurred in women of South Asian origin. Phew, I thought! It’s not that then.
‘So I stuck it out, counting down the weeks putting up with the itch and the exhaustion from not sleeping.’
At 37 weeks, Hollie went for a routine hospital check-up and casually mentioned her itching. Her bloods were taken as a precaution, and she was sent home.
‘Later that evening, at around 9 p.m., I received a call from the lab. The voice at the end of the phone informed me my blood had shown “high bile acid”, which meant I had obstetric cholestasis (now known as intrahepatic cholestasis of pregnancy or ICP) and I needed to contact my midwife first thing in the morning.
‘Naturally, I went into panic mode. I started furiously researching. All I kept finding were the words “stillbirth”, and my husband and I, plus my mum and dad, barely slept that night.
‘I did some research and it was then that I found ICP Support on Facebook. I couldn’t believe that so many women had it, and that there was so much information. I just wasn’t looking in the right place before.’
‘I called my midwife in the morning, and she told me there was nothing she could do and to take my bag and go to the hospital. I was frightened. I felt completely alone. I literally felt like, until I safely delivered my baby, I was a ticking time bomb. I was induced four days later.’
Hollie’s itching stopped after her son’s birth, although she went on to develop cyclical itch (which can occur just before menstruation or ovulation), not much is known about why it happens.
‘In 2020 we decided to have another baby. I’d already been told it was highly likely I would have ICP again in any subsequent pregnancies. So in preparation I did some research and it was then that I found ICP Support on Facebook.
‘That was a big turning point – knowing I’d found the right people to talk to about this condition. I read and read, and I couldn’t believe that so many women had it, and that there was so much information available, including recent research. I just wasn’t looking in the right place before.
‘Reading through post after post on the ICP Support Facebook group and gaining information from other women going through ICP made me confident that I understood ICP this time. The work by Dr Caroline Ovadia, which I also found via ICP Support, enabled me take control of my pregnancy and advocate for myself.’
‘Once I made contact with the charity, and the Facebook group, I felt so much more informed. I was able to clearly articulate what I wanted to happen.’
At her booking-in appointment, Hollie proactively mentioned her ICP history, and her midwife said they wouldn’t test her for it routinely; however, if she got an itch they would.
‘Sure enough, at around 21 weeks, I was itching. My midwife asked me to go to the hospital and they took my blood. ICP was confirmed. I saw my obstetrician that afternoon and I told her everything I knew. She laughed and told me I knew more than her (jokingly) but she was brilliant and put a plan in place to monitor me weekly.
‘My bile acid concentrations were up and down but fortunately never got too high. Due to other medical problems as well as ICP, it was decided I would deliver my baby at 37 weeks via c-section. Once again, the itching stopped after delivery.’
With two ICP pregnancies now behind her, Hollie feels passionate about raising awareness of ICP and letting women know about ICP Support.
‘It can be really hard feeling like you’re going through this on your own, like I did first time round – and not having access to good information online can really add to the worry.
‘But once I made contact with the charity and the Facebook group, I felt so much more informed. I was able to clearly articulate what I wanted to happen, because I’d read so much about other women’s experiences and the advice on the best protocol to follow.
‘There is still so much more we need to understand about ICP but until we do the most important thing is that we continue to raise ICP’s and the charity’s profile, and make sure all pregnant women and healthcare providers are aware of “the itch”!’
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.