Tuesday, July 15, 2014

Cholestasis of Pregnancy - Part One

I have struggled a long time about whether or not I wanted to write this post. Something about putting your fears out there for the whole world to see is very scary. Especially when they involve your children, your unborn children. But I figure if I can help other women who have had the same struggles that I had and came out the other side then I figure it was worth it. You see, when I was pregnant with my oldest daughter, I was diagnosed with Intrahepatic Choleostais of Pregnancy or ICP, which is a liver disorder that if goes untreated can result in delivering a stillborn baby.

(Disclaimer: I am not a doctor. I do not have a medical degree. I am only sharing my experiences. My knowledge on the subject only relates to my situation and does not serve to provide medical advice. If you have any concerns, please consult your physician).

My knowledge on the subject started several years before I even became pregnant. My sister was diagnosed with ICP during her pregnancies. I watched as she suffered from this condition and learned about it along the way. However, her story is her story to tell and therefore I will leave the details of her situation at that. But that was how I first learned of what ICP even was. So when I found out we were expecting our first child those were the first questions I asked my doctor.

Did she know what ICP was? 

How many cases had she treated? 

Is it hereditary? 

What were my chances that I would get it? 

If I did get it, what would be the course of treatment? 

Could I lose my baby? 

Lots of questions to ask for a first time mother. My doctor was great. She was this calm quite young woman who I think answered my questions just to appease me but when it came down to it she didn't know a whole lot about it.

At that time ICP was a relatively new condition and not much was known about it. In layman's terms ICP is when your liver and the baby don't get along. Your liver goes into overdrive and emits bio-salts into your blood stream causing you to itch often during the 3rd trimester however it can start earlier as I learned. And it is not the kind of itch that you can stratch and it will go away. This is an intense down deep in your skin kind of burning that no matter how much you scratch it won't go away. It usually starts on your hands and feet but it can spread to all parts of your body and is generally worse at night making it almost impossible to sleep. At least that was what happened to me. Other symptoms can include becoming jaundice in appearance and loss of appetite (at least in my case I didn't want to eat because I felt that food made the itching worse). The scary thing is that if ICP is not monitored it could result in the death of the unborn baby. And from my most recent experience, the doctors still don't know why.

So understandably I had a lot of questions for my doctor my first time around. And for most of my pregnancy I felt pretty good. I thought I might be lucky and not have to go through this awful experience that I watched my sister go through.  And then it happened. At 35 weeks. I remember it as if it was yesterday. My husband was out of town for work and we had just moved to a small town outside of the Minneapolis area. We had only been in our new place for a week. I had awaken in the middle of the night and my feet felt as if they were on fire. I scratched and scratched and nothing helped. Immediately I panicked. Was this it? It made sense. I had all the signs, intense itching at night and I was in the later part of my pregnancy and I hadn't felt the baby move as much lately. It was the later that freaked me out the most. What if something had already happened to my baby! That next morning the first thing I did was call my husband asking him to come home (although I knew that he couldn't) and then I called my sister. She was able to understand what was going on better than any doctor could and she had given me suggestions to make it more tolerable at least until I could get in to see my doctor (it was the weekend after all). She suggested I soak in a tub of luke warm not hot water, add oatmeal to the bath and to take milk thistle supplements. These were to all help with the itching so I could at least get some sleep.

Monday morning rolled around and hubby was back from his trip. I called out sick from work due to pure exhaustion from not sleeping all weekend and then I called my doctor. By the time she had returned my call it was later in the afternoon. I told her of my symptoms especially the part about the baby not moving and she wanted to see me right away. So we hopped in the car and began our hour drive to St. Paul. We were about half way there when we had a change of plans. The doctor called me back and instead of coming in to see her she wanted me to go to the hospital to be admitted for overnight monitoring. I panicked. Why would she want that? What was wrong? She assured me that it was just a precautionary measure to see how the baby was doing. I cried. A lot. I just wanted to have a healthy baby. This couldn't be happening!

I was admitted to the hospital and immediately had an ultrasound with a perinatologist. The baby had looked ok on the ultrasound which was a huge relief, but the doctor said that more then likely I had ICP and we needed to check the babies lungs to see if we could deliver. I then went in for an an amniocentesis. As he was pulling that large needle out of my belly he got a very concerned look on his face. He told me that I had meconium in my fluid and that we would need to deliver right away. For those non doctor folk, meconium occurs when the baby has had their first bowl movement in the womb. It is one sign that your baby is under stress. It is especially dangerous because if your baby were to swallow/inhale any of the meconium back into their lungs it can be life threatening. I cried again. I was not ready for this. I was only to go in for monitoring and now I would be delivering a baby. I had prayed for a happy healthy baby but I didn't know what I was going to get. Why was this happening?

I was induced and after several hours of labor it was determined that I needed to have a c-section. So at 35 weeks on a beautiful Tuesday morning my Addy was born. And she was healthy! I prayed and thanked God for giving me this miracle who was banged up but healthy! And she was beautiful!

(ok so these pictures are obviously after we had been home for a few weeks, she didn't come into this world looking quite like that)

She did have some struggles though, being born at 35 weeks she didn't want to nurse. Or even eat for that matter. We had to feed her out of a cup and she would lick it up like a cat. And because she wouldn't eat she didn't gain weight like she should have.

 She eventually got the hang of it though!

I am truly blessed and thankful that my story ended up a happy one. I know that not everyone who has had ICP has a happy ending. Had I not known about it prior due to my sisters situation, I would not have known it was happening to me. I would have just thought that the itching was normal pregnancy stuff and probably would have never said anything to my doctor about it. And then the outcome could have been very different. But I don't want to think about that.

So that is the very reason I decided to write about it. To inform others that they are not going crazy and to encourage them to seek medical attention if any itching starts. And if you do suffer from ICP, ask questions, learn about it, study it. It could save your childs life. If your doctors is unfamiliar with it, get a different doctor. One who will listen to you. Your babies life depends on it.

(Stay tuned for my story regarding ICP the second time around)

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