Although ICP can develop at any time during pregnancy, the majority of women experience ICP towards the later stages of pregnancy. Unfortunately Shola began itching much earlier than that, at 17 weeks.

“We were in Jamaica on holiday at the time, and it was very hot and humid, and I remember thinking, to begin with, that I was swollen because of the weather and flight. But then I began feeling intensely itchy on my back, and on the backs of my legs, and my hands and feet. And I just had a sense that something wasn’t right.”

Shola had experienced some liver issues when she was younger, in reaction to the contraceptive pill, so she recognised the itch as potentially being something hormone or liver related. But when she talked about it at her next midwife appointment, she was told it was likely to just be her skin stretching.

“I wasn’t satisfied with that as an answer. The itch felt too intense to just be as a result of skin stretching. And when I googled ‘itching in pregnancy’ and saw it could mean ICP, I knew I needed to get my bloods done.”

Shola called the East Surrey Day Unit and her blood tests came back within a few hours. They showed she had elevated liver results including abnormally high ALT – and despite only being 17 weeks’ pregnant, Shola’s bile acids were very high, so she was diagnosed with ICP.

“I began feeling intensely itchy on my back, and on the backs of my legs, and my hands and feet. And I just had a sense that something wasn’t right.”

“I remember being worried, obviously, about things like stillbirth. But frustratingly, the doctor was extremely vague and didn’t seem to be able to quantify the risks, especially in a pregnancy as early as mine. They gave me some Urso and some cream (which both did nothing to help my itching) and sent me on my way.”

Shola says that although the hospital agreed to doing weekly bloods and monitoring the baby, there was a lack of information given about the condition and very little emotional support.

“The information I received was all very medical. All the strategies and ideas for how to cope with the itch: I found all of that myself online. Things like putting after-sun in a fridge and using that to try and soothe the itch, or putting ice on your feet, or staying away from caffeine and sugary drinks. All of that was anecdotal and ideas I gleaned from forums online.”

Shola struggled with extreme itching, and the lack of sleep it caused, from then onwards, and was bed bound from 20 weeks.

“My body was a complete mess to be honest. I either had to be freezing cold or naked 24/7. I was bruised and battered all over, and on top of that extremely jaundiced. And I felt very low and on my own, especially because I couldn’t find any stories of women who’d had ICP so early.”

In the end, Shola was offered early induction but opted for an elective C-section at 33-34 weeks.

But her baby had other ideas.

“I was waiting for my C-section appointment but then went into spontaneous labour at 31 weeks. The doctors told me the baby had come early because of foetal distress. It was all very quick: the birth lasted 37 minutes from start to finish.”

As Shola’s baby was born so prematurely, she was transferred to NICU, special care and later transitional care for several weeks, but has now made a full recovery.

“After the intensity of our experience, and the weeks in bed I spent struggling, I’m so, so grateful that she’s here and she’s healthy. She’s 13 months now and well above her birth weight. I could have lost her, so I know the outcome could have been far, far worse.”

Because of the severity of her ICP, Shola was treated postnatally by consultants at King’s Hospital in London. This included genetic testing which discovered she has two genes (ABCB4 and ABCB11) that are involved in developing ICP. She’s now under review by King’s to see if she develops any liver issues later in life.

“I’ve also been told that the consultants will try me on some new medication if we get pregnant again, that’s looking like it could have positive results for women who have my particular gene deficiency. Professor Catherine Williamson, (a world-leading expert in ICP research who is also a Patron of ICP Support, working closely with the charity), was involved throughout my pregnancy and tried to assist my consultant as much as possible.”

As for the support that’s currently on offer for women with ICP, Shola thinks much more needs to be done.

“It’s not enough by any stretch, particularly for women like me, who are diagnosed with the condition much earlier than most people. I wish there was better access and signposting to groups and forums – that would have really helped. I only found ICP Support later on.

“I genuinely think it’s one of the hardest things I’ve been through. But I’m so grateful for my husband Kieron, he was amazing and I couldn’t have got through it without him. I think it’s important to remember the impact on our partners going through this, too. It’s a massive strain on the whole family.

“If I could share any takeaway message from what happened to me, it would be that ICP isn’t necessarily just something that affects women in later pregnancy. Cases like mine are rarer, but they do happen. So if you’re itching, always, always get it checked – no matter how early you are.

“Most of all, I wish that ICP could be talked about as much as pre-eclampsia or gestational diabetes. This condition is as serious as those. People need to know about it. They need to know the warning signs, so they can take action and protect their babies. We need better information and better support. So that more women can be supported, and more babies can be born safely.”

“ICP isn’t necessarily just something that affects women in later pregnancy. Cases like mine are rarer, but they do happen. So if you’re itching, always, always get it checked – no matter how early you are.”

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.