Victoria was diagnosed with ICP in her second and third pregnancies but looking back, she’s convinced she had it first time round, too.

“In my first pregnancy, I remember experiencing mild itching on my hands and feet. But it was right at the end of my pregnancy and not that severe. So, I didn’t bother mentioning it to anyone.

“It was only when I fell pregnant again two years later and started itching much more severely from around 30 weeks onwards, that I got diagnosed with ICP – and I realised I’d almost definitely had in my first pregnancy as well.”

In Victoria’s third pregnancy, ICP showed up even earlier, at 20 weeks.

“I remember my midwife saying in my second pregnancy that it’s not guaranteed to happen every time. But unfortunately, it didn’t happen for me that way.”

Victoria says she wasn’t that worried when she first noticed the itch in her second pregnancy.

“It was only that I had itched the first time too, and I put two and two together, that I thought ‘hang on, something might actually be going on here.’ So, I started doing some of my own research – you know, how we all do, looking things up on Google and diagnosing ourselves. Well, ICP came up. But I just thought ‘ok, I’m not worried. This is something I can tell people about and it can be sorted’.

“I talked to my midwife at my next appointment, and she admitted she didn’t know a lot about the condition but agreed to send me for some blood tests to check my bile acids.”

Unfortunately, when Victoria got to the hospital, most of the professionals she spoke to didn’t know a lot about ICP either.

“They said it was really unusual to see ICP in a British white person, and they were unsure about what to do with me. They gave me some creams, which did nothing, but didn’t offer me any regular blood tests. They didn’t think there was any cause for concern.”

“I think that was one of the toughest parts in my second pregnancy – the fact that no one really seemed to know what to do with me.”

With next to no support offered, Victoria struggled with her increasingly intense itch, and the sleepless nights that came with it, on her own and took herself into triage a few times when she felt like she couldn’t cope.

“I think that was one of the toughest parts in my second pregnancy – the fact that no one really seemed to know what to do with me. I felt like a burden, like I was having to pester them to do the checks. And every time they checked, the baby’s movements came back normal.

“I was still worried though, as I knew I had this thing that could have risks for my baby. But there was no one to sit me down and give me a plan of action. I felt very much on my own with it all.”

Victoria was booked in for an elective C-section at 39 weeks and despite her worries, the hospital didn’t offer to move that forward. Thankfully her daughter was born safely.

Four years on, when Victoria fell pregnant again, not surprisingly she was on high alert for ICP showing up again.

“I was obviously looking out for it a third time round. Even at about ten weeks, I already felt like I had twinges of itches in clusters. And I said to my husband ‘I think it’s going to happen again.’

“I was very proactive the third time. I talked about it with my midwife at my booking in appointment, to make sure it was on the radar and didn’t get missed. A few weeks later, when the itch had got worse, I was sent in for bloods.

“Thankfully, things had moved forward in some ways by then, in terms of my hospital’s approach to ICP. Still, none of the consultants I saw seemed to know very much about it. I remember some of them sitting there researching ICP while I was in the office with them. But they did at least have a hospital policy on it by then, and I was asked to go in for weekly bloods.”

Victoria was officially diagnosed with ICP at 28 weeks when her bile acids jumped from 12 to 28 that week.

“It was a massive blow to be diagnosed so early I have to say, as I knew how hard it was going to be to cope with the itch and sleepless nights all that time.

“I wish I could say something positive about how I coped but it was really, really tough. I felt so uncomfortable. I had bruises everywhere from scratching at my skin so much on my legs, my thighs, literally everywhere. I was up most nights until four in the morning.

“The hospital didn’t give me any meds as they said they’d now been proven to be ineffective. I begged them to bring my C-section forward, but they wouldn’t because they said it was against their policy to do so.

“And then one day at around 33 weeks, I noticed reduced movements. So I went into triage to get checked and the readings were normal. Two days later, I had reduced movements again. So, I went back in.

 “This time, when I was put on the monitor, they noticed the baby had a really high resting heart rate. Which basically means that his heart was having to work very hard to keep him alive.

“It all happened very quickly. I was rushed in for an emergency C-section and he was born at 33 weeks.”

Victoria’s son was taken straight to NICU and initially was struggling to breathe due to the high levels of meconium found in Victoria’s uterus and waters as a result of ICP.

“That was really scary. We were in neonatal intensive care for two weeks and then moved to a special baby unit. We stayed in hospital for two months altogether and he came home on oxygen because his lungs still couldn’t get the amount of oxygen he needed into his body. So yeah, the whole thing was a massive ordeal.”

Victoria’s son is now a healthy one year old and has pretty much fully recovered from the experience. But Victoria says it will take them all a while to process and get over what happened.

“I feel infuriated that there’s little to no education around ICP out there. If I hadn’t noticed the reduced movement and done my own research and known about the risks, I might not have taken such swift action. The consultant said if I’d gone in even an hour later it could have been very different.

“I’m now in touch with ICP Support - I just wish I’d found them when I was going through it myself. It’s great that they’re raising awareness not just for those who are pregnant, but among health professionals too.

“But for now I want to do my bit – by sharing my story. I want to shout it from the rooftops. It’s not a nice thing to go through and it’s even harder if you’re going through it alone.

“So I urge people to connect with the charity and join the online groups. And if you’re pregnant and you feel like something is wrong, please, please listen to your body and make sure something is done about it. More people need to know about this condition, and the hospitals need better training on how to support women.

“I’m so grateful I have my three children with me and they’re all healthy but it could so easily have been a different story for me.”

“For now I want to do my bit – by sharing
my story. I want to shout it from the
rooftops. It’s not a nice thing to go through
and it’s even harder if you’re going through
it alone.”

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 email the ICP Support supportline to talk things through.