My ICP story began in 2011 when I was pregnant with my first child. Unfortunately, my sister had had the condition with her daughter, so when I started feeling itchy at 17 weeks pregnant I was concerned. I was diagnosed with ICP at 20 weeks. This is relatively early to be diagnosed, but not unheard of. One of the main physical symptoms of ICP is itching. Some women itch more on the palms of their hands and feet, but for me it was all over. It was relentless. I scratched my skin till it bled. I was so scared about ICP coming backSomehow I managed to work, but I would come home and immediately jump into a cold shower. It was very difficult to sleep and I was exhausted. With the worry for my baby that meant it was a very difficult time. ICP, the symptoms and management are not always well understood by the medical profession, so I felt like I was constantly battling to get the treatment I needed. It was decided that I should have my baby early at 37 weeks because of the associated increased risk of stillbirth at full term (for severe ICP, which mine was). My son was born and was very healthy. The itching stopped soon after his birth. Having a newborn baby was easier than been pregnant, as although I was tired, I felt well!
Five years later we decided to try for another baby. I was so scared about ICP coming back and knew the chances of it happening were high. It returned with a vengeance, and this time I was diagnosed at 8 weeks. I was on the highest dose of medication and still my bile acid levels were not coming down. The itching was even worse than before. I could not work, I could not wear normal clothes (I lived in baggy pyjamas) and I was utterly sleep deprived. My skin was covered in scratches and sores where I had scratched so badly. I itched everywhere, all the time. There were times when I broke down completely, feeling totally unable to cope. I would get up at night and lie on the cold kitchen tiles to try to get some relief, but it never came. There were times when I broke down completely, feeling totally unable to copeI could not sit and relax as that seemed to make the itching worse, so I would pace around the house day and night, trying in any way to pass the time. I tried additional medication, but it just made me feel worse. I could not look after my son at all. I couldn’t even hug him, as any contact made the itching feel as if it was worse. For my five-year-old little boy to not be able to hug me was heart-breaking. It was a very difficult time for my husband too. I asked what it what it was like to see me like this and in his words, ‘it was horrendous, I felt helpless, you looked so ill’. He was caring for me and my son as well as worrying about our unborn child.
As a last attempt to try to reduce the bile acid levels and help with itching I had plasma exchange. This is a well used medical procedure for other conditions, but is more experimental with ICP. Under the care of Professor Williamson (a world leading expert in ICP) I went into St Thomas’ Hospital in London and had the plasma exchange. Being 7 months pregnant and having all the blood taken out of my body, the plasma siphoned off and replaced, and the blood returned to my body was not how I had imagined pregnancy! I had some short-lived relief, but still the condition remained severe. I am one of the very few people in the world to have had this treatment for this condition. I had my baby at 34 weeks gestation, as the experts felt this was the safest, earliest point at which to give birth. My little itch arrived in January 2017 and was a very healthy 6 lb 5 oz. She spent a week in special care before we got to take her home. The itching took a few weeks to completely go away this time. I was exhausted, but just so happy that my ICP story had a happy ending.
When I was pregnant with my daughter ICP Support were so amazing to me. They supported me, sometimes daily, and were always there when I needed someone to talk to. Doing the Great North Run for ICP Support is my small way of saying thank you. The money I raise will help run the charity, and very importantly fund the much-needed research into this condition to ensure that all the little itches are born safely.