The Goodnight Star is donating 5% of author royalties to ICP Support. This is a little-known charity, close to my heart as I suffered with ICP in all of my pregnancies. I interviewed Jenny Chambers, founder of ICP Support.
Jenny, can you tell us a bit about the charity?
ICP Support’s aims are to provide support and information to people affected by ICP, raise awareness of the condition and promote and fund research into it.
How did the charity begin?
The charity originally began life as an information and support line in 1991. Sadly I had already suffered two stillbirths by the time I was given my diagnosis of ICP, and when I subsequently discovered that hardly any doctors knew about the condition and that women were being told (as I had been) that itching was normal I felt I had to do something.
I ran the information line for 20 years and then in 2012 we registered as a charity
So what exactly is ICP?
Intrahepatic cholestasis of pregnancy (also known as OC – obstetric cholestasis) is the most common liver condition specific to pregnancy, with symptoms that include itching which can be so severe that the woman often can’t sleep and breaks her skin with the constant scratching. ICP is associated with fetal distress, spontaneous premature labour and, in severe cases, stillbirth.
Thankfully, the numbers of stillbirths are small, but it’s devastating for those women who have experienced it. The whole family and circle of friends is affected when a baby dies, not just the parents, so it’s vital that doctors know how to manage and treat ICP pregnancies. But this is challenging in the absence of any proven reason for why babies are at risk.
The exact cause of stillbirth is still being investigated by scientists, but the most likely explanation is that substances called bile acids affect the baby’s heart toward the end of pregnancy (from around 35 weeks onward). Bile acids are produced by the liver and are needed to help us digest our food and absorb important vitamins, such as vitamin K, which helps the blood to clot. However, they are quite toxic, so our body has to ensure that they remain at the correct levels. In ICP this regulation doesn’t happen probably due to a genetic variant within the liver and the bile acids rise above normal levels. They are known to cross the placenta and if very high in numbers may stop the baby’s heart working. Very early laboratory work has been conducted to support this theory, but much more research is needed. In the meantime the challenge of how to manage and treat the condition (which varies around the country) remains.
The good news is that some doctors believe that with careful management, which includes regular blood tests, the use of a drug called ursodeoxycholic acid and earlier delivery of the baby (around 37–38 weeks), the stillbirth risk is reduced to around the same as for any other pregnant woman with no complications of pregnancy. However, this also relies on the bile acids being kept to a certain level, which doesn’t always happen, so some mums-to-be may have to have their babies earlier than this.
Once the baby is born all the blood tests should go back to normal. Future pregnancies are also likely to be affected by ICP, and because the condition is known to be passed down through families it’s important that this information is handed down through the generations (even through the male line, as they may go on to have daughters).
What projects is the charity currently involved in and what has it achieved so far?
I always say that we are a charity with an international reach, which sounds a bit grand but it’s true because we provide support to women all over the world via our Facebook groups, general forums and support and information line. Since changing the name to ICP Support (we used to be called OC Support) our internet traffic has gone up even further. It was important to me to change the name because not only is ICP the term that is generally used by scientists, but it’s called ICP by women in America and other parts of the world. It made sense that we call it just the one name – it’s a confusing and complex enough condition as it is without having two names for it!
As well as providing support we have produced a generic leaflet to raise awareness and we are currently writing an information booklet that we hope can be sent to or accessed online by women from all over the world. It will eventually be translated into other languages.
We have also (albeit on a small scale) funded research into the condition, as we believe that science is one of the answers to keeping babies safe. Twenty years ago there was little or no research taking place in this country, but with the help of women (via the charity) one of the world’s largest research groups headed by Professor Catherine Williamson at King’s College, London has received many samples to study. I’d like to think that these samples have helped her and other scientists to better understand the condition, which in turn will help the doctors who look after women with ICP.
What are your hopes for the charity’s future?
We may be a small charity, but my vision is that one day we will be able to say that we helped scientists discover exactly how babies are at risk and develop ways to protect them so that all unborn ICP babies are born safely.
In the meantime we will focus on providing good research-based information to people affected by ICP, continue to raise awareness through the information booklet and website, host roadshows for women and education days for health professionals and promote and fund research into the condition. That means lots of fundraising, which is hard work but worth it!
If someone is concerned that they or someone they know may have ICP, what should they do and how can they contact you?
They can visit our website for information about the condition and they should let a health professional caring for them in their pregnancy know about the itching. Blood tests can help diagnose the condition, but it’s important to remember that sometimes they can come back ‘normal’ so must be repeated if the itching continues.
Thank you, Jenny, for your time and wishing you and the charity further success in the future.