Being off work while my hip heals is reminding me of this time 31 years ago when I was on maternity leave with my first daughter, Victoria. I can remember wishing the days away and just wanting it to all be over because I was big and uncomfortable (and itchy!).
They always say, ‘be careful what you wish for’, don’t they?
Victoria died on Halloween when I was 36 weeks and four days pregnant. She was born the next day. It took me many years before I began to like Halloween again. On the night she was born my then-husband and I looked up at the stars and told ourselves that she was one of them. We didn’t know the cause of her death at that time – the diagnosis of ICP was to come years later following yet another heartbreak – the stillbirth of my other daughter, Olivia.
And then last week I saw the heart-wrenching article about a young couple whose baby, Poppy, was recently stillborn because of ICP. They were publishing their story to raise awareness of the condition just as I did when I was diagnosed with it – it brought it home to me that there is still so much to do.
Raising awareness is brilliant. It has achieved a lot in the last 25 years and means that virtually all women in the UK who itch will be tested for ICP – that’s the complete opposite of what was happening when I was diagnosed back in 1991.
But raising awareness hasn’t been enough to ensure that all women are tested for ICP if they itch before the third trimester of pregnancy (28 weeks onward); raising awareness hasn’t changed those hospital policies that refuse to test women’s bile acids once diagnosed; and raising awareness can’t help to develop better treatments for ICP. It also hasn’t resulted in a guideline that all hospitals can follow to ensure the safe arrival of an unborn ICP baby.
And that’s why I am passionate about supporting research as well as raising awareness, because good quality research can effect change. Here’s a list of some of the things regarding ICP that research has helped to achieve:
- The introduction of ursodeoxycholic acid (albeit that it’s not a wonder drug)
- The introduction of bile acid testing
- The formulation of the hypothesis that it’s the baby’s heart that is affected by very high bile acids levels and which causes stillbirth
- The discovery that the itch isn’t directly related to bile acids and that two other substances are involved in the itching
- The realisation that earlier birth may help prevent stillbirth
- The knowledge that there are longer term consequences for women and their children, but which may be helped through diet
- The understanding that what takes place in our gut influences ICP and that knowledge of this could lead to better drug treatments to alter the environment in the gut (maybe a specially prepared probiotic drink!)
And don’t just take my word about why research is important. Have a look at our fantastic short film that parents helped us to make last year for a conference on ICP. Please be warned that it does contain images that you may find distressing.
But I know that there is still some way to go, because what’s been achieved hasn’t been enough to prevent Poppy’s death or help any of the other parents whose babies died because of ICP – that’s because research takes time and it takes money, and it’s not easy to fund research into a condition when there are so many other competing (and worthy) causes.
Perhaps that’s why I got a bit frustrated back in June and set up my fundraising page to raise what I imagine many people might consider is a ridiculous amount of money to aim for in such a short time. But I have to try, because knowing that yet another set of parents have had their hopes and dreams for their baby crushed and that they face a life time of ‘What ifs?’ or wondering what their baby would be doing is heartbreaking and I think that any amount that I raise (which will all go to research) has got to be worthwhile.
Next May Poppy’s parents will be facing what would have been her first birthday and tomorrow I will be silently wishing Victoria a Happy 31st Birthday and wondering…
If you can, please help us stamp out stillbirth caused by ICP and make a donation. And if you can’t donate please share this blog post to help raise awareness of ICP and what we are trying to do.