The story of Lyndsey
What is ICP? Let me tell you about my little boy…
In December 2013 I had a really vivid dream that I gave birth to a little boy. He was beautiful and had dark hair. It was one of those dreams that was so vivid, I still remember it two and a half years later.
A few weeks later I found out I was pregnant! I knew right from the start that it had to be a boy, firstly because of the dream and secondly because my pain disappeared. The same thing happened with my first baby… a boy.
In July 2014, we went on an epic camping trip. Two weeks in Cornwall, England and two weeks in Sussex near our family there. By the time we got home to Ireland, I was 33 weeks pregnant with my beautiful boy. It’s incredible how much a baby grows in a month! I went from easily jumping off the air mattress in the mornings, to having to be carefully hoisted up by my husband. I look back on that holiday with such fond memories but something else came home with me…
In the last few days of our adventure, I started to itch. I didn’t notice it much at first, just assuming I’d been bitten by bugs or something but a week after being home, the itch was far worse, especially at night and I was losing a lot of sleep because of it. One such night, I Googled ‘Itching in pregnancy’. I knew itching around the stomach is normal as your skin stretches but this was extreme and mainly on my hands, feet, back and the roof of my mouth. My Google search lead me to read about a disorder called Intrahepatic Cholestasis of Preganacy. What I read described me exactly.
Thankfully I had an appointment with my OB scheduled that week and I told her about it. She immediately ordered blood tests. A few days later, I was desperate with the itching and the complete lack of sleep. And that’s when I found the ICP Care/Itchy Mom’s page on Facebook. What an amazing, supportive group of women in the same boat! The next day I went to my GP. I needed something to get me through this. He told me the OB’s at the hospital were too cautious and I probably had scabies, even though I had no rash at all. He gave me a prescription for a lotion and told me to slather it all over my body. I didn’t. I wasn’t going to cover my body in a medication that was for something I didn’t even have and that he said was ‘probably’ safe for my baby. My OB had scheduled an appointment for the following week and my results were back. My Bile Acids were normal. I did not have ICP. I was confused and frustrated but the Doctor took blood again, just in case my levels rose. They did and my doctor was wonderful. She put me on a medication called ‘Urso’ to help protect my baby and scheduled his delivery for 38 weeks. So much for scabies!
I’m not sure how I got through the next 3 weeks. One thing about ICP that is obvious when you hear other Mother’s experience of it is that it causes high anxiety. The combination of the indescribable, unrelenting itch, the lack of sleep and the terrifying thought that your body is poisoning your baby and that he might not make it is almost too much to handle.
Around this time, in one of my few moments of sleep, I had another dream. That I was at the hospital and I went to the toilet to find I was bleeding. In the dream, I told a nurse and she said “Oh it’s placental abruption.” She and the other nurses seemed totally calm and I knew I’d be okay. The phrase stayed in my head for days. I’d never heard it before so looked it up to see if it was a real thing. It is!
I was SO relieved when September 10th 2014 arrived and we went to the hospital for my induction. Nothing happened in the first couple of hours, so the lovely Midwife sent me over to the ward to wait. I joked with her that I’d hoped to be home by lunch time. She laughed and said “Maybe tomorrow lunch time. I’ll see you in the morning.”
After half an hour on the ward, my contractions were coming thick and fast. I told a Midwife, but I don’t think she believed me. I was proud of myself for getting through them with no pain relief. My Mum called and asked me if I wanted her to bring the children over. I said not to. That I didn’t want them frightened or confused. What a good call… I hung up the phone and told Hubby I was going to the toilet. I stood up and felt a massive gush. I remember saying “Oh! Waters!” but when I looked down, all hell broke lose. I was standing in a huge pool of blood. My husband slammed his hand on the nurse call button while I stood there in shock. Nobody came so he ran into the hallway and shouted. The nurse arrived and told me to get on the bed and she ran out and shouted for help. I didn’t get on the bed… I remember thinking I’d get the sheets dirty. I’m amazed at how quickly I was surrounded by nurses and a monitor for my baby. I looked at the original nurse and said “Why am I bleeding?” I’ll never forget her face. She didn’t answer me, she just looked panicked. I looked at my husband at the end of the bed. He was ghostly white. I just said “Pray!” Which he did. I put my head back on the pillow and thought “I might die.” I felt totally and utterly peaceful. One of the nurses called out to me, “Don’t you pass out on us!” The monitor was turned on and when I heard my little boy’s heart beat, relief flooded me.
They wheeled my bed to the delivery suite and I remember making a joke about my legs looking like I’d had an accident with fake tan while they were trying to clean the blood from them. There were so many people, cleaning me up, hooking me up to monitors and the Doctor performing an ultrasound. My baby was breach. “C-section now!” Were her words and instantly I was being prepared for surgery, (which I’d never had before for anything.) They checked me and I was 5 cm dilated. I couldn’t believe it because I was coping with the contractions with ease. As we waited for the lift, my Midwife laughed and said, you really did want this baby by lunch time. As the door opened and they pushed me in, she told me that baby was on its way fast and if I felt the need to push, I needed to tell the surgeons straight away. She told the surgeons the same thing when we got to theater. Hubby had been whisked away to gown up and it was still in question whether I would be awake or asleep for my baby’s birth. Thankfully I was allowed to stay awake and when my husband joined me, although I still felt calm, tears found their way out.
Minutes later, my beautiful boy was born. Not crying. I looked at the midwife in panic and the Doctor told me it was very normal, he just needed to catch his breath, which he did and that little cry brought me to tears of relief and joy. When they gave him to me, I couldn’t see him very well because I had an oxygen mask on but I could see dark hair, just like I had dreamed all those months ago.
Hubby and baby went down to the ward and I was sown up. I asked the doctor what had happened to me and she told me the placenta had come away. I looked this up a few days later… placental abrubtion. My little guy really was my dream boy!
So what is ICP? It’s a disorder that affects the liver, specific to pregnancy which interferes with the flow of bile. During Intrahepatic Cholestasis of Pregnancy, the cells are unable to transport the bile out of the cells normally, which leads to bile acids building up in the blood. Elevated bile acids in the blood are associated with increased risk to the unborn baby. It is important to note that Intrahepatic Cholestasis of Pregnancy is not a single disorder, but a heterogeneous group of many different disorders which all lead to elevated bile acids. This means that the disorder presents very differently in different affected women. 80% of cases are diagnosed in the third trimester, about 10% in the second trimester, and about 10% in the first trimester, with documented cases as early as 8 weeks pregnant.
Symptoms include:
Itching
Dark urine
Pale Stool
Right upper quadrant pain
Fatigue/Malaise
Mild depression
Pre-term labor
Nausea/lack of appetite
Rarely jaundice
So the reason I tell you my story is because ICP Awareness is so important!
Intrahepatic Cholestasis of Pregnancy puts affected pregnancies at higher risk for several complications. With active management it is believed that the risk of stillbirth is similar to that of an uncomplicated pregnancy (less than 1%).
These are the risks…
Pre-term labor/delivery
Fetal Distress
Meconium Passage
Respiratory distress syndrome (RDS)
Failure to establish breathing (sometimes called fetal asphyxia)
Maternal hemorrhage
Stillbirth (Intrauterine Fetal Demise/IUFD)
I’m still a member of the ICP Group on Facebook and over the years I’ve noticed that many mothers with ICP have had problems with deterioration of the Placenta. I believe ICP caused my placental abrubtion.
Me and my baby boy were so blessed to have doctors who knew the protocol of medication combined with early delivery. Many doctors don’t, like my GP and wave it off as normal. The itch I experienced was far from normal. Awareness is so important to save the lives of babies affected by ICP. If you see a mother-to-be scratching, it may be nothing but it may be this horrible disorder. Please help me and the other ICP Mom’s to promote awareness in June and onwards. If I hadn’t found the ICP page, I could easily have lost my little man, who is now a happy, healthy 20 month old.
3 weeks ago we lost our baby Gabriel at 36 weeks pregnant. He was due to be delivered by c-section a week later. I had another placental abruption but this time I was at home and didn’t make it to the hospital in time to save him. We don’t know for sure that ICP was what caused his death but we have a strong suspicion that it was.
You can find more information at http://www.ICPcare.org for both Mom’s and Doctors.