ICP Support made such a difference for Natalie

Relentless itching that left her scratching until she bled, extreme insomnia and fears for her unborn baby turned what should have been a happy time into a living nightmare for Natalie Fryer.

The 34-year-old mum-of-two, originally from Heyside but who now lives in south Cumbria, is sharing her story to raise awareness about a serious but little-known liver condition that she suffered with through both of her pregnancies.

"Itching is almost the wrong word, it was so intense. It takes over and was more like a burning - all over my body. I remember feeling like my eyeballs were even itching. It was like torture," Natalie told the North West Evening Mail.

"It stopped me from sleeping. There were times when I didn't even know my own name, I was so tired."

Former Royton and Crompton School pupil Natalie was suffering from Intrahepatic Cholestasis of Pregnancy (ICP) - a liver condition associated with premature labour, fetal distress and, in the worst cases, stillbirth.

It can also cause extreme physical symptoms for pregnant women, not least the incessant itching she experienced.

Natalie, who lives with husband Mark and children Blake, five, and Sienna, one, is now campaigning to raise awareness of the condition and improve training for midwives.

She is working with the University Hospitals of Morecambe Bay NHS Foundation Trust and wants Cumbria to lead the way nationally.

The 34-year-old, who works in marketing management, said that she was vaguely aware of the condition because her mum had suffered from it, but she had no idea it could be hereditary.

Natalie added: "I knew of it, but not because my mum had discussed it at length with me. She'd just passed comment that we'd all arrived early. I was six weeks premature, my sister was nine weeks and my brother four. At the time she wasn't diagnosed because it didn't have a name.

"When I started itching, during my first pregnancy, I went straight on my phone and looked it up," said Natalie.

She rang Barrow's Furness General Hospital then visited the maternity unit to discuss her concerns and get tested.

Then 32 weeks pregnant, she said it soon became clear that even experienced staff didn't know a lot about it, including the genetic link, meaning she was left in the dark about many of the facts.

From then on, Natalie's pregnancy became a nightmare, with the itching starting on the palms of her hands and soles of her feet and spreading to her legs - which she'd scratch so hard she drew blood.

"My condition was a severe case. People asked me if it was like prickly heat. It was nothing like that. It was so intense," she said.

After an initial spell in hospital, Natalie had to have regular blood tests throughout her pregnancy then had Blake at 37 weeks - being induced early "for her sanity" as a result of the ICP.

She said she suffered from incessant itching right through until after the delivery.

"For five weeks it was constant, day in, day out. There was the odd night where I slept but I think it was because I was so exhausted. It was worst at night. It would start to build up from about 3pm and you'd just dread the evenings," she recalled.

She remembers being induced, all the time thinking that her baby wasn't going to survive.

"For me it was unknown territory. My mum had us all before 37 weeks. I'd convinced myself it wasn't going to be a live birth," she said.

While in labour, the baby's heart rate dropped and she had to be rushed into theatre for an emergency caesarean.

Thankfully Blake survived, but even then Natalie couldn't properly enjoy motherhood due to what had gone before.

"I did suffer from post traumatic stress but I didn't admit it for about six months. I kept getting really strong flashbacks. The whole experience just wasn't a positive one," she said.

The health visitor later picked up on it and Natalie did get support.

But the experience also made her think long and hard about whether to have a second child - not least because of the pressure it placed on her relationship with firefighter husband Mark.

"I have come across women who have decided not to do it again. It was a big consideration for us, because it put a massive strain on our relationship. My husband felt really helpless and the fact he was sleeping and I wasn't caused resentment," she said.

"The sleep deprivation takes its toll. Your mind starts to go and your tolerance goes. I'm not exaggerating, I was worried that we weren't going to get through it as a couple."

She was also worried about the impact a difficult pregnancy would have on Blake, but by this time she had discovered the charity ICP Support, which she said made a huge difference.

During her second pregnancy, Natalie said she was feeling quite good until 28 weeks. This time the ICP developed much earlier than before, and the relentless itching was back with a vengeance.

She said the symptoms returned while she was visiting her parents in Royton.

"I could feel it building up," added Natalie.

"I took myself to the local hospital and walked into the assessment unit. They took my blood straight away and said yes, you've got it.

"This time I knew exactly what was going on. I'd read every single research paper."

ICP Support were a great help, helping her connect with other women -some of who she would speak to online in the middle of the night when she was suffering the most.

She said just being able to reach out to someone who understood made a big difference, while they also shared tips on dealing with the symptoms.

She added that the team from the charity were always there, helping her through those long and difficult weeks.

This time, after the trauma of her first labour, she was booked in for a planned caesarean at 36 weeks.

"I had it for a lot longer second time. By the time the date came around I was just terrified an emergency would come in and I'd have to itch for another night," she said.

Having had both of her babies, Natalie is now keen to support other women through the ICP nightmare.

She said that while she was suffering, she could see that her mum knew exactly what she was going through and felt helpless. Natalie said she does not want to see her own daughter in that position, and is therefore keen to improve awareness and raise funds for more research.

She has recently met other women in Cumbria who have also suffered from ICP and is now working alongside Morecambe Bay hospitals trust, which runs Furness General, to see how they can improve the care available and make sure staff are fully informed.

"This is close to my heart. For a long time I didn't really want to disclose how I was feeling, even to friends and family but I'm at a point now where I keep hearing similar stories," she said.

"We've all had different experiences, but we all agree that there isn't enough knowledge among the professionals and the consistency of care just isn't there."

Natalie said ICP Support - the only charity researching the condition - has developed an online course for midwives, and she wants to see Cumbria lead the way in training its staff.

She said the Morecambe Bay trust has been really supportive, and she hopes to turn her experience into a positive.

"I really think Cumbria can lead the way on this. What I want to see is continuity of care. It would be amazing if every midwife at that trust, and in Cumbria, had completed that course.

"I want to start a national movement. That's my ambition. I'm just so passionate about it," she said.

Natalie is so thankful to ICP for the support she's received that she has also completed various fundraisers to say thank you.