Early in my third trimester of pregnancy, I had a few episodes of itching at night. It was winter in New York, with cold winds and radiators on overdrive, plus I was massively pregnant, so I didn’t think much about it—discomfort came with the territory.
But one of the pregnancy sites I perused the next day raised a red flag. There is a serious late-pregnancy complication called cholestasis that results in itching. Obediently, I made an OB appointment and got a blood test. Soon after, my itching subsided. False alarm, I thought. A friend joked that she, too, had thought she had cholestasis around this point, but it turned out to be a sunburn. Oh, us neurotic moms-to-be! My first round of results even came back normal, confirming my renewed sense of ease.
But a week later I got a call from my OB. You can guess what he said: There was a second set of numbers, a breakdown of the individual bile acid levels in my bloodstream, and they were just elevated enough to earn me the diagnosis: Cholestasis, or Intrahepatic Cholestasis of Pregnancy (ICP.)
The course of action was as follows: I had to take a pill made up of Ursodeoxycholic acid (or Ursodial) three times a day, and I would have to be monitored with frequent ultrasounds, as often as twice a week. Oh, and also, my labor would be induced a few weeks early. My doctor assured me they would manage it, and told me not to worry.
But of course I worried. I worried a lot. In fact, I immediately went onto Google and started freaking the fuck out: you see, the associated risk was not to me, but to the fetus, and it went as far as stillbirth.
The website ICP Care, which is by far the most comprehensive resource on the condition out there, breaks it down: “During Intrahepatic Cholestasis of Pregnancy, the cells are unable to transport the bile out … 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.”
So there I was, getting enormous, as one does, planning a baby shower, buying a bassinet and stroller and clearing out the house—all with the knowledge that my body was putting the fetus at risk every minute.
Don’t get me wrong: when ICP is managed exactly as mine was, that risk is technically no higher than a “normal” risk of stillbirth. Yet such statistics are small comfort. I was on edge constantly. Even at my baby shower, while I smiled and basked in the attention, fear hovered beneath the surface. The problem with this condition is the closer a pregnant person gets to term, the more likely it is that those bile acids will spike unexpectedly, and fatally. So every time those kicks quieted down, I worried.
On top of this, there was the uncertainty about my induction date. Even though all signs for me were good—my ICP was very mild, I was responding to the Ursodial, and I wasn’t actually itching much—my OB practice was aggressive about inducing. One doctor in our practice told us they would be inducing labor at 36 weeks, another said 37. We were set for 37 until a third doctor came through and said 36.
This ricocheting between induction dates was agonizing because my partner (who was also, it should be noted, very worried) and I had to keep weighing competing fears: on one side a premature delivery and potential NICU time, on the other, those bile acid levels spiking if we waited too long.
We ended up being booked for 36 +6 days, and because this was just shy of “term” (37 weeks is early term, 36 is considered late premature), we went to the hospital to get a round of steroid shots for the baby’s lungs. In the end it was the best option: it granted us the extra insurance of the shots, and the timing of a later delivery.
Everyone warned us that early inductions often fail. But on ICP Care’s “Itchy Moms” Facebook group, which saved and consumed my life those anxious weeks, I saw lots of success stories. It seems like ICP-afflicted bodies somehow “know” something’s wrong, so they often respond quickly to the induction drugs. Through the group, I virtually befriended another New York City-based mom who was due around the same time as I was, Anna. We messaged each other all day about ultrasounds and tests that measured fetal heart rate, about negotiating taking our maternity leave a month early and waiting, waiting, waiting for that induction date to be set in stone and wondering about the process, which sounded… not fun.
The baby did “beautifully” at almost all our tests. This would make me feel better, for about an hour, until the steady panic came right back. Right before I was induced, I went to prenatal yoga, and fainted on the mat. I opened my eyes to find my teacher sitting next to me, offering me water and a back rub. We chalked it up to low blood sugar but it was, in retrospect, partly stress. And I suffered this stress even though I was one of the lucky ones: only moderate bile acid levels, and I wasn’t experiencing the debilitating itching that prevented sleep and sanity and required, for some, steroids or mental health intervention. Still, I had a right to be keyed up.
As predicted, despite a lot of effort and pain on everyone’s part (12 hours of pitocin and a foley balloon before I got an epidural, ow!) my induction failed. I ended up delivering a healthy (and big!) baby via C-section 25 hours after I checked in to the hospital, just over the threshold of 37 weeks pregnant. When I heard my child wail after he was evicted from his cozy home, the feeling was immeasurable—the most intense relief of my life. From that moment onwards, the stress of recovery, of sleeplessness, of baby tears and puking, felt easy to take in stride. Now I was dealing with problems that were seen, no longer haunted by the thought of what my body was doing without my knowledge.
And as it turned out, my ICP buddy Anna was induced the morning after me and her process also stalled out, so she ended up delivering a girl via C-section on the same day as I did, the day that’s now our kids’ joint birthdays. They each recently turned a year old and they’re happy, even freaking adorable babies, if I do say so myself. In the last 12 months, our messages of miserable anticipation transformed into lots of hearts on each others’ private baby Instagram accounts. When we message, we admit that we have a hard time remembering those brutal weeks before we met the little ones that ICP moms love to say are “worth every itch.”
It’s funny—I’d never wanted a “natural birth,” but since I ended up with a birth process that was entirely medicalized and out of my control, I now fantasize about pacing the room, crouching in the shower, doing the endless cat-cow poses I learned about in my yoga and childbirth classes, free from hospital interventions. But it’s probably never going to happen for me. Chances are, if I get pregnant again, I will have ICP again, and it will be worse this time. And if that happens, all I’ll care about is having a healthy baby. In that hypothetical case, as happened before, knowledge and solidarity with others in my situation will be the only ways I can cope. The rest will be up to fate, and my doctors.
Cholestasis isn’t as dangerous as some complications, or as tragic as unexplained stillbirths—but it’s one of the many, many hurdles, speedbumps and dangers that lurk in the journey from conception to birth. It seemed like most everyone on that Itchy Moms facebook group had a live birth, some with NICU time and some without. And yet, what I personally observed was too many women having to educate their doctors with information that they’d gleaned from other women on the internet, a few of whom had lost kids and decided to spread awareness. And when we did get the right treatment, it was pricey as hell, from the Urso to the ultrasounds to the c-sections.
Thanks to my good insurance, the toll ICP took on me was physical and mental, but not financial. But as I’ve watched the GOP play political football with prenatal health coverage this year, I always think about my fellow itchy moms, who are up all night with fiery skin and worried hearts.
Sarah Seltzer is a writer of fiction, journalism and criticism in New York City and the editor of Kveller.com, a site for moms.