Fiona – ICP

Noah, Fiona and Isaac

Everything was absolutely fine in my first pregnancy and I was planning a water birth at the local maternity home which was going to be amazing.  I felt really good and was really enjoying the whole experience until I got to 30 weeks and I began to itch, no rash – just itching, all over my body on my hands, feet, belly, everywhere.  Everyone told me that it was just hormones, that my skin was stretching, that it was normal but I think I knew that it was something slightly more then that.  I mentioned it to my midwife at my next check up and she said that I wasn’t to worry and did a routine blood test.  That night my husband and I went to a childbirth education class and when I got out I saw that I had a missed call from a number I didn’t recognise.  Phoned the number back and it was the large maternity unit just under an hour away from home asking me to go in, then, straight away at eight o’clock that night. The blood test had shown that my bile levels were significantly raised and they needed to give me medicine to bring it back down.  I was diagnosed with Intrahepatic Cholestasis of Pregnancy (ICP) which is a condition where the pregnancy hormones disrupt the flow of bile, causing it to back up and flow into the liver itself which then impacts function.  ICP is diagnosed when the bile levels are higher in the blood are higher then 10, mine were over 200 and can affect 1 in 1000 pregnancies. No one knows for sure what causes it – it can run in families none of my cousins have it nor my sister or mum but I was first to get it in mine,

I was told that I would not be allowed to go past 37 weeks as ICP significantly increases the risks of stillbirth and that I would require regular monitoring to check that my levels weren’t getting too high. I was in complete shock that my itching could be something that serious. I was given ursodeoxycholic acid to help reduce the concentration of the bile and asked to come back for further monitoring.  Unfortunately the medication did not work and the itching was unbearable.  They then started to give me steroid injections to boost the baby’s lungs as it was becoming clear that I would be having him early.  I had to go back every few days to have blood tests done to monitor the bile levels and my liver function. I itched all over, I scratched myself raw as there was no relief, I tried menthol cream, I even tried putting my hands in the freezer to numb them to stop the irritation, it was constant, no better night or day, hot or cold – it just didn’t stop, it was horrific, it felt like my body was on fire.  I was admitted to hospital at about 34 weeks when it became clear that the situation was worsening.  My eyes were turning yellow, I was so tired, I had no appetite which were all symptoms of the liver not working properly.  I was put on the fetal heart machine to monitor the baby’s heartbeat and it was obvious that my condition was starting to impact my baby. They decided to induce me and it was painful, I’m not going to lie, it was sore.  However the heart rate monitor showed that his heart beat was dropping so it was decided that I should have a caesarean right then.  My husband had gone home and was doing a shop when I called him and said that I was having the baby now! I think Ian flew to the hospital, the forty minute drive must have taken him only 15 minutes! Noah was born at 34 weeks and was a really good weight.  I felt better pretty much straight away, the itching went straight away.  I had to have blood tests for about six weeks afterwards to check and I was fine.   I just concentrated on getting us better. I saw him but didn’t hold him until the second day. He had so many tubes and wires and machines on him, holding your newborn is scary enough but he was so tiny with so many things attached to him.

When I fell pregnant with my second son, I was told that there was a risk that I could develop it again (some studies out the reoccurrence rate as high as 90%)  By that time I was living here in Bahrain and when I asked my doctor and she dismissed my fears,  I knew I had to return to Scotland for the birth as she had no clue about ICP.  I started itching at 31 weeks and to be honest was not sure if it was just paranoia on my part! At my 32 week check up I mentioned it to the midwife, who was the same midwife I had seen with Noah, and she took bloods again which meant that I had the same good care as before.  I was offered the choice of another c-section and I took it – I had had one before and knew the benefits to me and my family so Isaac was delivered at 34 weeks. I felt much calmer second time around but it was still scary.  We made the decision that Ian would come back to Scotland once I had been discharged from hospital as I would need him then to help me manage the two boys which he did 13 days after Isaac was delivered so I had my best friend in the delivery room with me.   

Where I did find it hard was feeding both boys.  I was given a photo of Noah to help me produce milk (oxytocin the love hormone is closely linked to the production of breast milk and seeing an image of your baby when you cannot be with them is believed to help stimulate it) I was given a breast pump machine by the hospital with Noah and told to pump or hand express what I could.  I never seemed to get that much, certainly not compared to the others who seemed to be putting mountains and mountains of breast milk in the bank! I wanted to get home – they would have kept him in longer but after the trauma of the illness and the premature birth I wanted home, and my stuff and my own environment.  I felt like a failure when I gave up but the pumping, the baby, the whole thing was so hard and I just wanted to get on with our lives.  After about six weeks I stopped with both of them.  I also received contradictory advice from the hospital and from the breast feeding support worker that they sent to see me at home which just confused me even more! 

But my boys are amazing – you would not know that they were both premature or that I had had a dangerous liver condition. I grew them, gave them six weeks of milk, which was packed full of colostrum which has lots of antibodies and protection for their bodies. It may not have been the birth and pregnancy experience I expected it to be but it’s made me appreciate our little family so much more.

January 2019

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