Cholestasis of Pregnancy: Holding On For Life
Pregnancy was driving me crazy. At 36 weeks I wanted to jump out of my skin; I was itchy all over. I’d be standing in the bathroom changing into my pajamas and rake my nails down one leg, up the other, over my arms, my belly, my chest, my back.
Scratch scratch scratch.
“Mind over matter!” my husband would cheer from the bedroom. I couldn’t wait until the next time he felt under the weather.
I managed to claw my way through the next four weeks, give birth to my daughter and forget all about it. Almost.
Two years later, I was pregnant with my second daughter. At 31 weeks, I’d taken one last reporting trip, and flown high in the Colorado plains to interview migrant farm workers for a story on depression. I thought the altitude was making me sluggish. Then I realized I was itchy. All over. Five weeks earlier than the last time.
“What can I do?” I wailed to my OB-GYN. “Get delivered,” was his good-natured but totally unhelpful response. He’d delivered thousands of babies and didn’t brook much fuss. I couldn’t make it nine more weeks. Benadryl didn’t touch it. Baths didn’t help. I kept telling him something was wrong inside of me. I wanted to crawl out of my skin.
A week later, on Thanksgiving night, I had insomnia and googled “pregnancy and itching.” I turned up itchymoms.com, a website where moms swapped stories about getting into car accidents from itching so crazily while driving. I read of cholestasis of pregnancy, a rare condition that only affects 1 to 2 women per thousand, more if you’re an indigenous woman from Chile (I’m not) or Scandinavian (my mother is). I’d found my fretful and howling tribe on the internet.
I copied down the blood tests I would need to confirm the diagnosis and the drug recommended to treat it.
“Don’t go in like some nut who’s diagnosed herself off the Internet, OK?” pleaded my husband, the son of a surgeon, as I grabbed my file folder and headed back to the doctor.
Instead, my doctor asked to photocopy my notes. He sent me to the perinatal unit next door where blood tests confirmed the internet diagnosis. Finally, I was taken seriously! It was a good thing I had complained and been perseverant. Cholestasis of pregnancy carries a higher risk of stillbirth. Apparently gall bladders, those tiny things you only hear about people removing, need to secrete bile which binds with toxins in the blood so the liver can filter them out. My gall bladder was loafing about, just as my body had packed on 40 extra pounds and producing toxins for two. The toxins were trying to climb out my skin.
I was put on a synthetic enzyme to get my blood back to normal. The tricky part is no one knows if the baby is out of danger, so babies get induced at 37 weeks when their lungs are mature, just to get them out of harm’s way.
But I wasn’t satisfied to chemically tame my system and float to the end of pregnancy. I’m also an investigative reporter, and I wanted to vanquish the crooked defect lurking in my DNA.
I went looking for scientists investigating my condition and cold-called a very surprised liver researcher in San Francisco. She seemed a little dumb-struck by my offer to enroll in her study, but I got my doctor to agree to draw the vials of blood she needed. (I had always wondered about the creepy FedEx envelope warning not to send blood and then recklessly shipped off my own.) There was a satisfaction in shipping my tainted blood off to someone doing battle with something that must have tormented my Viking foremothers.
Instead of scratching myself to death in a rocky fjord, I popped my synthetic enzyme and doctors kept a close watch on the baby. Each week in the bays of a wide hallway separated by mesh walls, other high-risk moms and I would sit plugged in to monitors listening to the tch-tch-tch of our babies’ hearts chugging along. It was like a scene out of a Margaret Atwood novel as each of us listened to our own private aquariums willing our babies to make it. No one talked. There was no guarantee that the baby wouldn’t die the minute you unhooked from the machine and walked to the parking lot.
If cholestasis came on earlier with each pregnancy, this would probably be my last. Two years before, when the obstetrician delivered my first daughter and held her out to me, her eyes, just seconds old, locked on mine. It blew my mind. “I want to do this 100 more times,” I thought. Now, I felt like I was holding my breath in a tunnel, gasping to exhale at the first sign of daylight.
At 37 weeks, we entered the hospital, still quiet in the days following the New Year’s holiday. The doctors gave me a steroid shot to prime the baby’s lungs. They spied on her with an ultrasound as they sneaked a long needle through my abdomen, drew out her amniotic fluid and pronounced her ready. The next morning, I was plugged in to a pitocin drip that surged in my veins like dynamite in a lake. Wild waves of labor crashed through me and she slammed out like a pile driver. On a cold Minnesota afternoon, my little ejected passenger howled with six pounds seven ounces’ worth of outrage at being displaced from her cozy womb. I’ve never been so glad to meet someone in all my life.
We called her Liv. Her name means “life” in Norwegian. She held on for life.