As you know, I am raising money for ICP Support to honour the memory of the 5 babies we lost to miscarriage last year. This charity may not be an obvious choice as it is not a miscarriage charity. However, they have been such a huge support to me, I wanted to explain a little more about why I have chosen them and what ICP is.
ICP – intrahepatic cholestasis of pregnancy. What a mouthful! Sadly for me, it now rolls off the tongue after living with it and the aftermath for 3 years. I say aftermath because the condition is unique to pregnancy … it is meant to go away within hours or days after birth. Might have known I would be the unlucky one! Since being diagnosed with ICP early in my pregnancy with Boo, my life has changed.
What is ICP?
Few people, unless they experience it, will have heard of ICP. It is a rare condition of pregnancy that effects your liver and the flow of bile acid. The flow of bile acid becomes sluggish and spills over into your blood stream. While this isn’t life threatening for the mother, it is associated with preterm labour, fetal distress and in very severe cases, still birth. You can read more of the facts and research on the ICP Support website. This is not something any mum to be wants to hear, and so naturally, the diagnosis can cause a lot of anxiety. In fact, this is where my current mental health problems began.
In most cases, women are diagnosed in the third trimester but it can develop as early as 7 weeks. When I was pregnant with George, my bile acids had already risen fairly high at 7 weeks. I already had the condition.
The condition usually presents as itching**. For me, it was a burning itch under your skin that is so distracting you MUST itch it. Almost like there are fire ants walking around under the surface of your skin setting a trail of burning itching. The itch is awful. Most commonly the itch is on your hands or feet. For me, when I was pregnant with Boo, it started on my back and then hands and feet. At its worst, my eye balls itched and I longed to scratch them. Thankfully for me I always have terrible reactions to mosquito bites so I have had years of practise of not itching but it was torturous when my eyes itched. Resisting itching is exhausting and a lot of the time it was far easier just to go ahead and itch … until my skin bled. This is common for people who have ICP. It also meant very little sleep because I would lay awake at night unable to switch off from the constant itching.
On top of the itch, I also felt unwell. Sluggish beyond being tired – a heavy ache in my limbs making it hard to move. This feeling of being under the weather and sick meant that I never got the second trimester energy burst people talk about! I went straight from hyperemesis gravidarum to itching. I was diagnosed at 18 weeks with Boo (although I started itching at about 15 weeks). I could no longer run … in fact going for a walk left me so depleted I would sleep or throw up.
Then another unhappy symptom appeared – RUQ pain. Pain around my liver. Some people get this and describe it as a dull ache. I would describe the pain as a dull ache interspersed with agonising burning that was unbearable. This required lots of testing to see if I have gall stones – I don’t. There isn’t much research into why women experience this pain yet. ANother reason why I want to support ICP Support – hopefully one day they will find out why and be able to help.
Other symptoms can also include jaundice, dark urine and pale stools***. This happened to me a couple of times in pregnancy when my levels increased (although never the jaundice – I was spared that one!).
I mentioned to my midwife at a regular check up that I was itching and thought nothing of it. She said she would add another test to my regular bloods. I don’t remember if she told me why. It was not on my radar that anything was wrong. I was just glad that the HG had ever so slightly subsided! A couple of days later, I had some urgent messages on my phone to call the hospital. Again, I thought nothing of it. I worked in a school with no phone signal, and by the time I had finished teaching for the day, I thought it was too late to call. So I went home, none the wiser. When I finally phoned the next morning I was in for a bit of a shock. They had been trying to contact me for 3 days and they told me I needed to go to hospital straight away. I told them I needed to teach. They told me I needed to go to hospital. I had a bit of a meltdown … no one gets told to go to hospital right away unless it is serious. I drove home in shock and waited for my husband so he could drive me because by this point I was terrified.
On arrival, we were ushered into the side room. This is the room no pregnant woman wants to enter. A quiet room out of sight. Away from all the pregnant bellies. Away from the happy ultrasound room. I remember sitting on the bed swinging my legs because I was too nervous to sit still. By the time the midwife came in, I was ready to hear bad news. So when she said I had a condition that carried a 40% chance of stillbirth* the room became even smaller, I stopped hearing anything else she said and my world changed. I had by transferred to the alternative path for pregnancy. No more birth plans, and giddy excitement. This event was traumatic. I was now fully engulfed by anxiety and fear. A feeling I didn’t shale the whole entire pregnancy.
*Most research now shows that in the most severe cases there is a slight increased risk of stillbirth ie., nothing at all like 40%. The midwife did state this but I didn’t hear it because she also said that some old studies showed that the risk was as high as 40%. My husband assures me she gave other far more promising figures, but all I heard was 40%. That was in my head the whole pregnancy. For up to date research go to ICP Support’s website.
And that is why I needed ICP Support. The charity is made up of doctors, scientists and women who have had the condition. They understand. They listened to my fears and reassured me. Every. Single. Day. They provided me with facts and research to calm my fears. They told me how to relate my concerns to my consultant. And they let me know that they had felt the same way, and it was OK.
I spent hours and hours in the hospital during Boo’s pregnancy. Every time she hadn’t moved for a few hours I would become terrified and dash off to the hospital. This was on top of the 3 visits I made each week to have Boo’s heart rate monitored to make sure she wasn’t in distress. While this reassured me, I would also sit there looking at her heart rate, terrified that I was hurting her and there was nothing I could do about it. Due to the frequent hospital check ups, it became too difficult to work. I spent the majority of my pregnancy alone at home. Slowly losing my mind as I ran through every way that I was already harming my daughter. Terrified that we would lose her any minute. Sure that we would be one of the unlucky ones given that my levels were already severe at 18 weeks. I scratched, threw up, slept and cried. It was pretty horrendous. It is hard trying to balance some pretty gruelling symptoms alongside the fear of the impact they are having on your baby. Anytime my symptoms increased, I panicked that it meant Boo would be harmed (although research*** shows that severity of symptoms doesn’t necessarily correlate with severity of illness}. Again, it’s impossible not to worry when it comes to your unborn baby.
An end in sight?
Then finally it was over. I had a wonderful birth and my daughter was safe in my arms. All I had thought about during the pregnancy was that moment – her safe in my arms. So when time continued to move forward, I suddenly felt totally lost and unprepared. I remember being left alone as it was past midnight so M had to leave. I had no idea what to do. And the fear and adrenaline that I had been feeling had no where to go. I was in shock. Numb. It was not how I expected to feel, although looking back now it is no surprise at all that I developed PND.
When ICP doesn’t go.
ICP should resolve pretty soon after birth. If it doesn’t, it indicates that there is actually a different liver condition that needs to be diagnosed. My itching continued. And those bouts of pain – they became unbearable. Within Boo’s first year, I was hospitalised so many times from pain. Hooked up to a morphine drip waiting for it to subside. Horrendous. I could no longer eat greasy food. I threw up all the time. And I still felt so damn unwell. Eventually, after a lot of begging I was transferred to a hepatologist at a bigger hospital. Their preliminary diagnosis was a condition called PBC – primary billiary cirrhosis. A life limiting condition. To say I was terrified then is an understatement. I quit my job and switched off the part of my brain that felt fear. I hid from it. I just needed to keep going. Thankfully, more blood tests revealed that while it is possible that I may develop PBC, I don’t have it now. However, this left the conundrum: why had my blood results not returned to normal, why was I itching and being sick and why was I in so much pain.
When Boo started to breast feed less, my period returned. I noticed a change in the symptoms. It wasn’t all day every day. They were worse at certain times of the month. Or if Boo had a big feed. Or any time I pumped. After tests, it was revealed the my bile acid fluctuated with my cycle indicating that I probably did in fact have ICP – I had just become incredibly sensitive to hormones. For most women, this results in a return of the itch around ovulation and menstruation. That is how things are for me now. There isn’t much known about it, but one theory is that as my body was producing hormones while breastfeeding, that had caused the symptoms to continue. Investigations are still ongoing! One day maybe we will know for sure. I’m just thankful that the severe pain is now a rarity, I just live with a dull ache. Maybe in time doctors will discover an underlying liver condition. Or maybe I am so sensitive to hormones, breastfeeding meant that the symptoms continued. Of course, I breastfed for 2 years! That’s a lot of itching!!
ICP and George
I knew getting pregnant again was a big deal for me mentally. My husband and I spoke about it a lot. We talked about what we knew now about ICP and what we knew about my body. We decided that if we were to get pregnant, we would go into it was a positive mindset. We knew that I would have ICP as my bile acid were usually elevated so pregnancy would only increase them. We committed ourselves to believing the new research findings that the risk of stillbirth is only slightly increased in the most severe cases***. We would be fine. I knew I would find pregnancy hard physically but I was determined to cope with it mentally. I was ready.
I knew I was pregnant with George right away. I am sensitive to hormones … my body goes from not pregnant to DEFINITELY PREGNANT as soon as the egg is fertilised (not based on science but I’ve lived with this body and had a lot of pregnancies!). I spent every moment with George utterly thrilled by his presence. I was sick as a dog and loving it. I was so happy to have a little life growing inside me. We were so confident everything would work out. When I started itching more, I didn’t worry. When I had a little bleed, I didn’t worry (I had bled with Boo). So when we lost George, M and I were left in shock and devastation. I was ready to face a pregnancy with ICP if it meant we could have George. I was not prepared at all to lose him. I still can’t believe it. I still have all the little outfits I bought for him, the blankets, teddy and a rattle. Still can’t quite say goodbye.
There is no research (as far as I know) into ICP and miscarriage and I am not saying for one moment that ICP caused my miscarriages last year. There is no medical evidence to say that is even possible. But ICP Support have been there from the start of this journey, and they would have been there had any of the babies survived longer into pregnancy. Hopefully once day, I will need their support again. So I need to do my bit to make sure that everyone knows the vital work that this charity does and make sure that they can continue to offer help to women and men who are utterly terrified. I need to support them so that they can continue their research until no more babies are stillborn because of ICP. I need to remember the positive mindset I had when I was pregnant with George and channel my energy into something positive. Because, quite frankly, I am sick and tired of ICP being in control of my life. It’s time for me to take charge again …
**If you are pregnant and think you may have ICP, contact your midwife.
***This post is based on my experiences. For the most recent research and up to date advice, go to ICPSupport.org or their facebook group.
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