By Jo Marshall
Devorah was diagnosed with ICP in her fifth pregnancy and says the support from the ICP Support Facebook group was invaluable in helping her through it.
‘I was already considered to be at risk in my pregnancy as I have Crohn’s Disease. So when I found out I had ICP as well, that was a double blow.’
To start with, Devorah had thought the itching on the palms of her hands and soles of her feet was due to her eczema, as the weather was humid in Manchester, where she lives, and that’s when her eczema tends to flare most.
‘I mentioned it at my next midwife appointment, and they immediately seemed concerned so they took bloods there and then. I got a phone call the next day to say my bile acid levels seemed high but I should go to the clinic at the hospital for more thorough testing.’
Once ICP had been diagnosed, Devorah and her husband began reading about the condition online.
‘That made us feel really nervous, particularly as I was already considered high risk, and was now even more so. I was given weekly blood tests and a liver ultrasound, prescribed antihistamine to help me try and get some sleep at night, and given some aqueous cream with menthol. But none of those things really helped.
‘It was really helpful to read other people’s experiences and know I wasn’t the only one going through this. I didn’t ask for advice or support personally, but I read through a lot of the posts that I found relevant to me.’
‘In some ways, it was good to have a diagnosis so we knew what we were dealing with. But I hardly slept at night because I was so uncomfortable and when I did eventually fall asleep it was out of sheer exhaustion.’
Devorah says that the ICP Support Facebook became something of a lifeline.‘It was so helpful to read other people’s experiences and know I wasn’t the only one going through this. I didn’t ask for advice or support personally, but I read through a lot of the posts that I found relevant to me, and that was a huge help and comfort.’
In the end, Devorah was induced, partly because of ICP but also her Crohn’s.
‘My baby was measuring small on the last scan, so they decided to get him out. Because of my previous labours and births, I didn’t have any pitocin or other drugs, they went straight into breaking my waters. From then the baby was born after only 2.5 hours – the quickest labour and birth I’ve experienced.’
Devorah wishes there was more awareness of ICP.
‘I think, other than my husband, who saw how bad the itching was, no one really understood what I was going through unless they had experienced it themselves.
‘Reach out and get support from ICP Support and the Facebook group. They can’t wave a magic wand and take the itch away, but it really does help your mental state to hear from other people going through it too.’
‘It wasn’t just the itching, it was trying to keep it controllable in the middle of the night! I would have a bowl of freezing cold water next to my bed that I would dunk my feet in throughout the night. There were also the weekly blood tests that I had to go into hospital for, which could sometimes take hours out of my day because of all the waiting.
‘My advice for anyone going through this now is to remember that nothing will completely remove the itching, and to literally try and sleep when you can – even if it’s during the day. And don’t be embarrassed to mention it to your midwife/healthcare professional so bloods can be taken as soon as possible.
‘Also reach out and get support from ICP Support and the Facebook group. They can’t wave a magic wand and take the itch away, but it really does help your mental state to hear from other people going through it too, to know what you should be asking for from your doctors, and most importantly to know that you’re not alone.’
If this story resonates with you because you have experienced a stillbirth, you are very welcome to join our Facebook Precious Memories Group or our general ICP Support Facebook Group. You might also like to call the ICP Support helpline to talk things through.