If you have been following my weekly bump updates you will know that I have been having a problem with itching for the last 10 weeks (since I was 13 weeks pregnant) and it has been getting worse over that time. Since my 20 week anomaly scan with for our baby girl I have been having various bloods and liver testing/ scans done to find out why I have been so itchy. Up to this point there was no answer and almost everything was coming back at normal which was both a relief and a frustration as they can’t help fix something that isn’t showing up!
Well I have now been diagnosed with a rare pregnancy condition called obstetric cholistasis or sometimes refered to as OC for short. Obstetric cholistasis is a condition of the liver. This condition is rare with it affecting around 1 in 140 pregnancies in the UK.
Obstetric cholistasis is a serious condition that usually starts in the third trimester of pregnancy although in the very rare cases like mine this condition can start much earlier. (this is so rare that my hospital have not had a case as early as mine) The condition itself has a lot to do with bile acids,these help your body digest food. The bile acids in pregnant women who have obstetric cholistasis are not used properly and this causes them to build up in the body and at this point they can be detected in the blood.
Bile acids can be detected in a small amount in everyone’s blood since they aid in digestion. Bile acid levels above normal but below 40µmol/L are considered to be a mild case while those above 40µmol/L are considered to be a severe case.
The main symptom of obstetric cholistasis is itching without any rash to explain the itchiness. The itchy feeling is often worse on the hands and feet although it can be an itch all over your body (mine is all over my body). Other symptoms can include dark urine, pale poo and it can also cause jaundice (when the whites of the eyes and skin turn yellow or yellowish).
Obstetric cholistasis has been linked through medical studies to be the cause of premature labour and still birth in some babies whose mothers have the condition. The most recent research into this suggests that the risk of stillbirth for those who have a bile acid level above 40µmol/L is between 1 and 2 in 100. While the risk goes up to between 4 and 5 in 100 in those with a bile acid level of 80µmol/L. The condition can also cause an increased risk that the baby will poo while still in the womb which can cause problems if the baby breathes this in during delivery as it can irritate their little lungs.
Okay, now that I have shared all the information I know from the NHS website and the doctor I spoke to at my maternity unit I will talk about getting diagnosed with obstetric cholistasis.
I am actually going to go way back to when I was 16 weeks +6 days pregnant and in hospital for my perineal infection to be drained through emergency surgery. After I had been taken back to the ward the day of the surgery a few of the nurses asked me about my itching and told me that I would need to get tested. They told me to mention it to my midwife as it can be a sign of a liver problem. After I was discharged and started attending my doctor’s surgery to see the nurses there with my dressings another nurse mentioned that my itching could be a sign that something wasn’t right with my liver. I wasn’t able to get an appointment with a midwife earlier than my 20 week scan which was only about 2 weeks later.
At my scan I did mention it and I was told to go straight down to admissions after the scan and tell them about the itching. I did this and after sitting there for over 2 hours with a rather annoyed partner and a very bored 3-year-old I was told it was most certainly not going to be obstetric cholistasis and it looked like I had a pregnancy rash but that if I phoned back the next day I would be able to get the results of the blood tests they had done. Upon phoning back it did show that my liver function was abnormal and I would be sent on the Monday morning for more in-depth blood tests which would require fasting bloods.
I went to this appointment and had 8 vials of blood taken which got sent off for testing and I was also refered for a liver scan (this was done that same week). I was also told at this appointment that it was very unlikely that it would be obstetric cholistasis as they had never seen a case happen so early but it does happen in the third trimester. That afternoon I got my results from the blood tests and most had come back as normal. It also showed that my liver function result had started to come down which was great news!
At 22 weeks I had a review set with one of the maternity hospital doctors to get the results of those blood tests and my liver scan. Almost everything had come back as being normal with my liver apart from the liver function which was much lower than it had been but it was also still a little high. I was sent to have the fasting blood tests done again on Thursday. On the Thursday morning I went in and had the tests done. If I got a call that afternoon then something had shown up. Later that day I got the call. My liver function and bile acid levels had got really high and after they had spoken to the doctor they had medication I needed to come pick up and take before I went back to the doctor the next morning.
Next morning we set off for our appointment not really knowing what to expect or what was going to happen next and in all honesty I was a bit scared as to what could be wrong. At the appointment the doctor explained my blood results, my liver functions had gone back up and in fact had went over what they had been before which had already been 4 times their normal ranges. My bile acid levels had also gone up and had went from being a level of 4µmol/L to being 111µmol/L (which you will now know is extremely high). She also explained what obstetric cholistasis is. She told me that I have a very early on set of this condition.
At this point in pregnancy we don’t want to do anything or to have to do anything as there is no cure for this condition other than giving birth! We are now trying to control my bile acid levels with medication and finding a way to control the itching as best we can. That is all that can be done at this point. For the next 6 weeks I will have weekly fasting blood tests done at the hospital and it will be reviewed at my 29 week midwife appointment. I was also told that I need to keep an eye on how baby is doing and making sure that she keeps moving around. I have been doing this but I am now becoming very aware of her movements and how many times she’ll have a moving around session during the day. If anything changes I have been told to go up and see a midwife to be safe.
At the moment we are aiming to get to 36-37 weeks pregnant, so we are aiming to get to that point at the moment and unless baby becomes unhappy and shows signs that she isn’t doing well inside we will wait until her lungs are mature. But I won’t be getting to 40 weeks with this pregnancy.
As far as how I feel about all of this goes, I don’t know. I know I should be terrified but I am not. I am scared, of course I am there are risks to our little girl and she will be coming earlier than we thought. In fact she might be here in 13-14 weeks which is pretty scary in its own right.
At the minute I don’t think I am as worried about all of this as the only thing it will really affect now is me and how itchy I am. I think that over the coming weeks I will worry more and more about everything and the potential dangers that come along with this condition. I am worried about how much worse the itching will get over the next few weeks/ months as any information I have found point to it getting worse the further along I get.
I will put any updates on my obstetric cholistasis in my weekly bump updates from this point forward so you can follow along with those too.