Reaching out after itching torment of ICP

Oriana Pavitt with Roddy 6, Lawson 3 and Noah 1. Picture: Scott Taylor.
Oriana Pavitt with Roddy 6, Lawson 3 and Noah 1. Picture: Scott Taylor.
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THE itching was unbearable. Oriana Pavitt would scratch at her hands till the skin was nearly bleeding; her feet were constantly rubbed on the carpet as she sought relief.

None was found. It wasn’t her skin which was itching, it was her blood. And at 34 weeks pregnant, she knew it wasn’t just “one of those things” which can happen when a woman’s body is in baby-building mode.

“It just seemed wrong to me,” she says. “This was my second pregnancy and I hadn’t felt anything like it when I was pregnant with Roddy, so I knew I needed to talk to my midwife about it.”

Blood tests were done, and the results were what the midwife had feared: Oriana had ICP, a liver condition which can affect one in 140 women during pregnancy and is
believed to be the reason 11 babies are stillborn every day.

It’s also believed that pregnancy hormones affect the flow of the liver’s production of bile acids for digestion purposes so that it builds up in the blood – causing the itch and, if unchecked, serious complications for the baby.

Oriana already knew what that was like. Roddy, her first child, had to be induced after she suffered pre-eclampsia, a dangerous rise in blood pressure. And although the Dalkeith mum was put on to medication to regulate her liver, she knew she was facing a similar birth experience.

“I had never heard of ICP at all before being told it’s what I had. It’s just not something that had ever been mentioned,” says the 38-year-old, who has just run her first half-marathon on behalf of charity ICP Support as part of the Edinburgh Marathon Festival in a bid to raise awareness about the condition. “But the higher the levels of bile acid and liver enzymes like ALT (alanine transaminase) in the blood, the more of a risk there is to the baby.

“So suddenly I was being closely monitored, having checks of the
baby’s heart rate twice a week and extra ultrasounds. I got to 38 weeks before being induced with Lawson.”

Not that it deterred Oriana and husband Stewart from expanding their family. When Lawson was 15 months, and Roddy just four, Oriana became pregnant again.

“I was told that it could happen again in any other pregnancy, there was a ten per cent chance it might not. They don’t know why it happens. It’s just luck of the draw, or unlucky really. However, when I was 16 weeks with Noah I started to notice the itch again.

“With my history I told my midwife that it didn’t feel right. The blood test began to show the enzyme ALT level was rising slowly, and then at 22 weeks that’s when the bile level was high enough for ICP to be diagnosed again.”

Back on medication and being monitored, the itching began to get worse.

“It was all down my legs and I’d be clawing at them, doing the carpet shuffle to try and scrape my feet to get rid of it,” she recalls. “It’s the sort of itch you can’t get rid of no matter what you do because it’s in the blood, it’s just awful.”

Then, when she was 34 weeks, Noah’s heart rate dropped. “I was rushed into hospital and strapped to monitors and told if it didn’t rise in half hour he’s have to come out.

“Thankfully it picked up or I’d have been wheeled into theatre. But by then my bile levels were over 50 – 40 is the danger level – and the itching was unbearable.

“The medication was having no
effect, not controlling it at all. The consultant called it and said he needed to come out.”

So Noah was born at 35 weeks, young enough to be classed as premature.

“He spent three days in intensive care and 13 weeks in the neo-natal unit at the Royal Infirmary, getting his breathing under control, then regulating his body temperature and then establishing feeding from a
bottle.

“It was a really hard time. I had the other two boys, and so when Roddy went into nursery I’d get to the hospital with Lawson to see Noah for two hours, then go home. Then when Stewart came in from work I’d head back to the infirmary. You’re not supposed to drive until six weeks after a caesarian but I had to after about a week just so I could get to the hospital.”

As for itching, that disappeared – quicker after Noah than it did with Lawson, but Oriana says she feels she’s suffered no long-term effects.

“I did have to get a liver biopsy after Lawson just to ensure there was nothing else wrong, but my liver is fine.

“Everything went back to normal once they were born. I get cyclical itching these days, but nothing near as bad.”

Noah is now one year old, and to thank ICP Support, which helped her with information, she decided to tackle her first half-marathon.

“I started running last September when I thought I would give it a try and went with a running group. It was hard work but I found that I
actually enjoyed it. Then around
November I looked up the Edinburgh Marathon and saw that they did a half also and I thought, ‘I could do that’.

“So I signed up with the intention of all monies raised going to ICP Support – they very kindly provided me with a running vest.”

She completed the half in three hours and eight minutes – “longer than I wanted, but I was glad just to get over the finish line,” she says with a laugh.

“The first ten miles were fine but the final three were the hardest. It hasn’t put me off and I’d definitely do it again.”

She says the same about ICP and pregnancy. “I haven’t ruled out another child. And at least I’d be very well prepared for what could happen,” she says.

“At the moment though I’d just be happy if more women were aware of ICP and what it can mean to them.”

One in 140 women every year

INTRAHEPATIC Cholestasis (ICP) is a liver disorder which occurs during pregnancy, and can be diagnosed at any time from eight weeks onwards.

It is also called obstetric cholestasis and affects one in 140 pregnant women each year in the UK.

The causes of ICP are not yet fully understood but it is thought that pregnancy hormones may be a factor.

Symptoms include itching – from mild to severe, mostly of the hands and feet, and jaundice as well as excessive tiredness and a lack of

appetite.

Blood tests are done to diagnose ICP – one to see how well the liver is working by testing certain enzymes and the other to test bile acid amounts in the blood.

Bile acids are thought to be harmful and can cause complications for the baby.

If ICP is diagnosed, a range of medications can be prescribed and post-pregnancy the symptoms resolve quickly.

The condition is associated with an increased risk of premature birth, foetal distress and stillbirth, so hospitals monitor women with ICP more closely and are likely to deliver babies earlier to minimise risk.

There is no evidence, as yet, of any long-term effect on the health of mums or babies.

For more information on ICP visit www.icpsupport.org