Intra-Hepatic Cholestasis of Pregnancy
This is just a quick page describing my experience with Intra-Hepatic Cholestasis of Pregnancy (ICP), which is, in lay terms, a condition in which your bile acids leak and accumulate on the skin (and cause unbearable itching). The result of said experience, my son Theodore, was born healthy and full-term just under seven months ago; I've meant to write up a web page about it ever since and never got around to it. Hopefully I'll remember what we did now! Warning: were I a professional writer, I would be a novelist rather than an essayist -- this will not be a short page.
First, a couple of disclaimers -- I am most emphatically NOT a doctor, I don't play one on TV (we don't even HAVE a TV!), and I do NOT recommend trying to treat ICP without a doctor's input. This isn't something to fool around with, folks -- untreated, unmanaged ICP carries with it anywhere from a 10-25% fetal death rate. That's dead BABIES, dead either at or right close to term, and you really really REALLY don't want to risk that unnecessarily. Secondly, I tend to approach life as holistically as possible, I don't take what doctors say as gospel, and I tend to reach for alternative medicine as a complement to or replacement for conventional Western medicine. So when I was diagnosed with ICP around week 32 of my second pregnancy, I didn't just accept that I was going to be miserably itchy until I was finally induced early and there was nothing I could do to improve the situation. Instead I looked for things that I could do to help myself and my baby, while never -- NEVER -- disregarding the very real risk inherent in ICP.
So. As I said above, this was my second pregnancy; my first ended at 24 weeks with the delivery of a very tiny little boy. He's four now, delighting in being a big brother and in asking "why" every chance he gets. As fortunate as we've been with his outcome thus far, though, we did NOT want to repeat that experience -- 101 days in the NICU is plenty for any one family, thank you. So this pregnancy was managed very differently from the start. Knowing now that I most probably have an incompetent cervix, I had a cervical cerclage placed at week 13. Complications from that cerclage, which was the most painful thing I've ever experienced including two unmedicated labors, led to modified bedrest until 36 weeks. Around 31-32 weeks I got sick. Not horribly so -- a mild fever, general unhappiness, etc, but accompanied by a very sore mouth with many, many white/red lesions and sore spots. Even drinking was painful, not to mention eating; I went from eating a healthy diet and drinking a gallon of water/day to painfully struggling to eat a soft scrambled egg or a little homemade vanilla pudding and managing to drink MAYBE 1/4 gallon of water per day. I lost 8 pounds within a week. I personally think that wreaked havoc with my system and led to my liver/gallbladder problems, though there's no medical evidence for that (very little is known about ICP in general). I spent the night in the hospital at 32 weeks due to frequent contractions; after two IV-doses of Terbutaline and one in pill-form they finally stopped and I was able to go home. Thankfully the fetal fibronectin test was negative, which was a very definite relief. At a routine OB visit that next week I mentioned that I was itching all over, all the time. The OB said it wasn't uncommon in pregnancy, but that there were a few things they should test for just to be safe. So I went in for a blood test, not really all that worried but doing research regardless (the Internet's great for that sort of thing). The more I read about the options -- PUPPS, ICP, etc -- the less I wanted to have ANY of them! I noticed that I had several of the less-common symptoms of ICP though, including pale stools and very dark urine; that was somewhat less than reassuring. I got a call on Sunday from my OB saying that the bloodwork showed elevated liver function numbers, and that I had ICP. He then proceeded to tell me more about the condition -- that it wasn't "curable", but that giving birth almost invariably cleared it right away; that there were various treatments for the itching, topical and otherwise; that untreated it carried a high fetal death rate; and that the management was essentially balancing between giving the baby as much time in utero as possible and inducing labor (or having a caesarian) by 36 weeks (because the majority of fetal deaths occur after that point). I was, understandably, freaked. He was talking about there being a very real chance of my baby dying, about frequent non-stress tests and ultrasounds and AFIs (amniotic fluid ... inventories? I forget -- they do an ultrasound to make sure that you have enough amniotic fluid), about inducing this baby that I had struggled so hard to keep inside as long as possible. He was talking about my baby DYING.
After a little bit of freaking out, though, I knew there had to be something I could do to improve my situation. I was adamantly opposed to taking any of the anti-itch medications, since they hadn't been shown to help the baby and I didn't want to add another possible problem to the overall equation. So my first problem was to find ways to improve the itching. "Itching" sounds like such a minor problem; this really was anything but. I was scratching myself non-stop, writhing, crying. I cut my fingernails so I didn't raise welts as quickly. And from what I understand I actually had a pretty mild case of the itchies -- some women have it much, much worse. If you're one of them, I feel for you.
Things that I found helped relieve the itching:
That's how I managed the itching. It sucked, don't get me wrong, but it was bearable and I really, really, really didn't want to be exposing the baby to more medications than I absolutely had to. (I still feel horrible about the three doses of Terbutaline and the numerous ultrasounds that went along with the cerclage placement and removal.)
As far as the medical aspects -- my OB told me, and my reading concurred, that there was nothing I could do to alleviate the condition. All I could do was manage the itching and everything would immediately get better once the baby was born. As a firm believer in at least trying to make my situation better, though, I did a bunch of research from less-Western-medicine-centric sources, talked with a lot of knowledgeable people, and listened to my body. (I have to admit that desperation and my need to feel that I really was doing SOMETHING to help played a role here.) So while I was submitting to weekly NSTs (asking the baby to move as quickly as possible and telling it that everything would be okay and that there really was a reason for this), quick ultrasounds, etc, I was also participating in my own regimen to bring my liver and gallbladder back to health.
Let me stress again that I am not a doctor. I don't have any medical training. I made these choices based on what knowledge I had at the time; just as I recommend against taking a doctor's word as the Word of God, I strongly recommend against taking mine as gospel either. Think for yourself, and do so with the realization that ICP is NOT something to mess around with.
That said, here's what I did.
I'm not saying what I did would work for everyone, but it did work for me -- I got steadily better (as measured by the results of weekly blood tests that my OB at first had thought were unnecessary and the results of which he was continuously surprised by), and by the time we called to say I was in labor they were just about to call to tell me we no longer needed to induce labor because I was all better! Here's how my bloodwork changed. Bearing in mind that it usually took a week to get the results, the 5/28 test was the one which indicated that I had ICP. My ALT increased the next week, which led to a consult with a hepatologist who agreed that it was a bit odd but nothing to worry about as long as I didn't get significantly worse over the next few weeks and get better once I gave birth. The results of the 6/24 test had just come in, showing all numbers except alkaline phosphatase (which they weren't worried about, and which I believe naturally increases in the third trimester) were normal, the day Theodore was born (at 37 weeks, 5 days gestation).
|Bile Acids, Total||5.0-14.0||52.2||44.2||20.3||15.4||10.2|
Personally, my experience with ICP gave me more confidence in my body and its ability to heal itself, and somewhat less confidence in the medical professionals, who were stunned that I had gotten better before delivery but couldn't imagine how anything that I'd done could have made a difference: "it must've been just a lucky fluke," I'm pretty convinced it was more than that. :)
There is a lot of information about ICP available, both online and in various medical journals. Although some of it is contradictory and much is frustrating, I found that it helped to know what I was dealing with. ICP has a fairly chance of recurrence in subsequent pregnancies; if and when we do decide to have another child, I will be doing things to enhance my liver and gallbladder's health starting before we conceive and continuing until my baby is born. Hopefully that will be enough to prevent another itch-filled pregnancy, but if it isn't I will at least have some ideas of how to handle the situation.
If you have any questions or comments, please feel free to contact me; I can
be reached at icp at quotidian.com (delete the spaces and replace the
"at" with the @ sign -- just my little effort to reduce the amount of
automated spam I get!). Good luck!
Oh, and unrelated to absolutely everything, but if you're expecting a baby, contemplate making (or convincing someone else to make) some clothes, blankets, etc, for your little one out of organic cotton. Your best source for organic fabric and natural notions is NearSea Naturals (and I'm not saying that ONLY because I own the company! :). Think how wonderful it'll be to know that your baby is clothed in pure, non-offgassing cotton, and to know that the environment wasn't harmed in the making of said cotton!
All content contained in this page is copyright 1998-2006 Tara R. Bloyd and Peter A. Norby. Reproduction without consent is strictly prohibited.