Wednesday, February 1, 2012

Cholestasis of Pregnancy

In a final F-You to me, my pregnancy ended in a spectacularly bizarre fashion.  It wasn't bad enough that I was high risk from the start.  It wasn't challenging enough that I BLED or spotted through the first trimester and I had spotting off & on throughout the entire pregnancy.  It wasn't enough of a bummer that my pregnancy with my first son was textbook perfect and this one, likely my last, was one problem after another.  No, I ended up with a pretty serious problem right at the end.

I suddenly began experiencing severe itching around 36-weeks.  I casually mentioned it on Facebook and a friend cautioned that symptom could indicate liver problems and suggested that I call my doctor right away.  I initially dismissed the idea because itching doesn't seem all that dangerous and I hate bugging my doctor since I'm sure that I'm already his most annoying patient.  I ultimately decided to mention it to him because it's his job to deal with me, however annoying I may be, and the thought of having a liver problem scares the heck out of me.  You know, because you need a functioning liver in order to do things like live.

His response was that itching is most likely caused by dry skin, but he was concerned that it was my hands & feet that were so itchy.  Specifically, my palms & soles.  Now, when I say that my palms & soles were itchy, I don't mean that I randomly scratched every now and then.  The itching intensified at night and I would be awake and scratching at myself for hours every night.  I'd use a rough washcloth and rub it against my hands & feet for hours on end.  A few times I scratched myself with my wig brush because the stiff bristles felt good even if they made my skin red and sore.  Nothing gave me any relief other than eventually passing out from exhaustion. . .and, even then, I'd wake up scratching.

The doctor mentioned that itchy hands and feet could be a symptom of cholestasis of pregnancy (CP or ICP) and he wanted me to go to the lab right away to get blood drawn.  My liver function, as indicated by enzyme levels, and my bile acid levels were what he specifically wanted to see.  I went to the lab late that day and the results indicated that a specific enzyme was four times over the upper normal level.  I saw that number and was like, "Oh sh*t!"  Seriously, liver problems are something that I really fear and that number scared me.

Based on that test result alone, my doctor decided to proceed as though he had all data and had me begin to take a handful of medicines to manage the symptoms of ICP.  He gave me scripts for Actigall, Atarax, and hydrocortisone lotion.  So much for being the hippie who doesn't like to take medications while pregnant.  Now I was forced to do so for my own health and sanity and for the health of my as-yet unborn baby.

Why did he not have all the data to make a firm diagnosis?  There are only a handful of labs in the country that run bile acid tests.  Why?  I have no freaking idea other than ICP is a fairly rare complication of pregnancy.  So, naturally, that's exactly what I ended up diagnosed with once those bile acids came back.  Oh sh*t indeed!

Of course, I spent plenty of quality time with Dr. Google and what I read only freaked me out all the more.  Did you know that mothers with ICP have a significantly higher chance of having a stillbirth later in pregnancy?  As in, the last couple of weeks of pregnancy.  Having had 36-weeks of emotional turmoil, I wasn't expecting to face the possibility that I may not be able to hold this baby and take him home.

My c-section was initially scheduled for 39w5d and my doctor bumped me up to 38-weeks on the nose along with ordering twice-weekly NST visits at the hospital and telling me to go to Labor & Delivery (L&D) if I notice it takes more than one hour to feel ten fetal movements instead of the standard two hours.  By the way, non-stress test (NST) is a total misnomer because you're only there if there is a potential problem so I'd say all moms to be are stressed in that room.

My itching never improved, even with meds, but my liver enzymes did drop down some and that was encouraging.  The problem was, as one would expect, the very real risk of stillbirth.  It's standard protocol to deliver prior to 38-weeks because the risk of stillbirth significantly increases at the end of pregnancy.

I became so fearful for my baby that I'd try to force fetal movement throughout the day so I could have some assurance that he was still living.  One night I fell asleep and woke with a start when I realized that I hadn't felt any movement in the last hour.  Sure, he may have been sleeping. . .but he may have been dead.

That's the emotional cruelty of ICP.  Your bile acids can spike to dangerous levels with absolutely zero warning.  Those bile acids get high enough and your baby dies.  You have no idea that it's about to happen or even that it's happening.  You just show up to your NST and the RN isn't able to find a heartbeat or you can't seem to get the baby to move during your fetal kick counts and you go to L&D only to discover that it's not a living baby you'll be delivering.

So I spent my time bargaining and pleading with God for my baby.  I'm holding my 6-week old baby in my lap as I type this and just remembering those fears makes me feel sick and brings tears to my eyes.  How I worried that I would lose this baby!  I became convinced that this baby was going to die; his little heart would stop and my heart would break.

I had a meltdown early one morning and cried to my husband that I couldn't take these fears any longer.  I was 37w3d and I couldn't understand why we were waiting for me to reach 38-weeks other than to increase the chances that the baby wouldn't need to spend any time in the NICU.  I said the thing that was rattling around in my brain:  I'd rather have a baby in the NICU than a baby in a box in the cemetery.

I showed up to my NST that morning and the RN asked how I was that day and I burst into tears.  Well, I didn't just cry.  I was pretty hysterical.  I told her that I couldn't take losing another baby, not this close to the end, not now, not this baby.  I couldn't sleep, couldn't concentrate, couldn't think of anything else besides the fear of losing my baby.  She simply said, "It's time." 

She phoned my doctor, spoke with the perinatologist and the hospital, and the OB currently on duty at the hospital.  All agreed that I could deliver that day.  And that's exactly what happened.

The good news is that my baby was perfectly healthy and didn't even spend one minute in the NICU, my liver is functioning perfectly well now, this harrowing experience is over and I have a beautiful baby in my arms.  The bad news is that I'd have a significantly higher chance of developing ICP in a subsequent pregnancy (60 to 90% chance, depending on the source) and that it tends to manifest earlier and more severe in subsequent pregnancies.  My husband was already not a fan of hearing my talk about wanting a third baby and this bit of knowledge slammed the door on us having a third.  He flatly refuses to consider a third baby and a part of me understands. . .but another part of me still wants a third baby.

Why write this down?  I don't know.  I guess it's a good reminder that even the weirdest symptoms could indicate serious problems.  I shudder to consider what could have happened had I not mentioned this crazy itching.  I think it's also a good thing to explain just how emotionally difficult it is to get an ICP diagnosis.  It's not just itching and whining.  The itching was horrible, but the fear of losing your baby right at the end of pregnancy is so much worse. 

I still would like to write down something about my delivery and my recent bouts of second guessing myself about breastfeeding (bizarre, but true), but my time is pretty limited these days if I want to use both hands to type so it might be a few days or weeks.