Story
Our beautiful daughter, Sienna Rose Stedman was born sleeping on the 24th September 2025 at 37 weeks gestation. It was only once she was born and after conducting our own research that we discovered that I had ICP (Intrahepatic Cholestasis of Pregnancy). Although I had every symptom of this condition in pregnancy, these symptoms were wrongly attributed to my underlying health conditions of eczema and Gilbert’s Syndrome. Unfortunately, ICP can only be detected by a bile acid blood test which is not done routinely and although my GP referred me to the obstetric team querying ICP due to the severity of the symptoms I was experiencing, they still felt there was no need for any additional testing, and as a result, the condition was not diagnosed until it was too late.
I was also on a medication called Azathioprine to treat my eczema, which I was told was safe in pregnancy by my dermatologist. Again, after we researched this further, we discovered that a government alert had been raised in May 2025 advising that anyone on this medication whilst pregnant should have a bile acid test. Neither my obstetric team or dermatologist was aware of this update. Throughout every step of my pregnancy, a lack of knowledge, professional curiosity and training along with system errors failed our family. This will live with us forever.
Although locally changes are already underway, we are trying to ensure these changes are implemented in hospitals nationwide. We are striving to make bile acid tests mandatory for every pregnant woman, along with spreading an awareness of ICP which is silent but potentially deadly, to ensure no other family goes through the same trauma, as this has been utterly heart-breaking for us all.
My wonderful friends Helen James and Kirsty Macdonald are running the Bath & Bristol Railway Run on the 19th April in memory of Sienna. Helen will be running the Half Marathon and Kirsty will be running the 10K. I am truly grateful to both of them for doing this for us, Sienna and for other families - words cannot describe.
We hope that increased awareness and improved testing protocols will help save lives and spare other families from similar loss. If we had been aware of the symptoms and dangers ourselves, our beautiful girl would be with us today.
Funds raised from the event will support:
Equipment for the Forget-Me-Not Suite at the Royal United Hospitals Bath NHS Foundation Trust
Research into ICP A dedicated awareness campaign to improve recognition of symptoms and prevent future tragedies
Natalie Harley & Dan Stedman