What I wish people knew about living through a complicated pregnancy

Pregnancy is a complex experience. Even when things go right, it’s hard work. But when things go wrong, people have no idea what a beast you are to get through it all.

Let me start off by saying if you have recently been diagnosed with cholestasis of pregnancy for the first time, this story was not written for you. Frankly, you don’t need to be scared anymore than you already are. But maybe pass this along to your friends and family so that they’ll know how strong you are.

I embraced the pregnancy experience of the first and second trimesters. I savored every food aversion and food craving. I relished in my queasiness and fatigue. My husband and I created elaborate announcements. I ate whatever fruit my baby was measuring as.

But I didn’t get a third-trimester experience.

One night I was enjoying a deep, peaceful slumber when an itch on my feet woke me up. I typed in “pregnancy” and “itchy” into a search engine, and the results were terrifying.

I braced myself to avoid Web-MD syndrome, but after hours down the rabbit hole of the internet it was irrefutable — I had every symptom of Intrahepatic Cholestasis of pregnancy, or ICP. I went from having the most normal pregnancy in the world to having a 1 in 1000, high-risk pregnancy, literally overnight.

The first thing to know about ICP is that it can lead to still-birth at the end of pregnancy. So, I went to the hospital once a week for fetal monitoring, BPP tests specifically. The maternal–fetal medicine specialist, the person who did the big 20-week ultrasound, would now be doing an ultrasound once a week. They also prescribed me UDCA, and set my delivery date.

That’s right. The way to reduce the risk of stillbirth is to avoid giving the fetus the chance to die in there. Generally, an induction is scheduled at 36 or 37 weeks.

ICP also brings with it an increased risk of gestational diabetes, pre-eclampsia, and premature labor. I had bloodwork done at Labcorp every other week to monitor bile acids and bile salts (basically the progression of the cholestasis). I also had weekly visits to my OB to monitor all potential complications such as pre-eclampsia.

The salt in the wound is that not once did any intervention reduce the itching. The itching continued to intensify up until the delivery. This was not poison ivy or a mosquito bite. It’s nearly impossible to describe the persistent, uninterrupted, constant pain.

Photo by Jessica Scrivener.

I felt like fire ants were rubbing broken shards of glass underneath my skin. I was naked whenever I was home as everything seemed to make the itch worse. Any food made it worse. Sitting made it worse, exercise made it much worse, night time made it worse, being upset made it worse.

In addition to frequent cursing and swearing, I iced my body and spent most of the time in a cool bath with Epsom salts. I iced my feet whenever I wasn’t in the tub, to the point where my skin and feet were getting additional damage. Turns out your body isn’t supposed to be submerged in ice or water for a full two months.

The items I used to scratch myself are both shameful and amusing. Sometimes it was whatever was on hand, like a fork or my dog’s paws. Other times I would use whatever would be discrete, like the corner of a wall. Or a decorative cactus. Sometimes I just went for excess. I used a lemon zester at one point, nearly cutting a decent chunk of my leg off. After that, I threw away all my razors and pretty much stayed out of the kitchen.

You know those horror movies where a victim finds themself in a cell, and there are warnings scratched into the wall or written in blood? My legs, chest, and belly looked like that at all times. Go ahead and look up more images while keeping in mind cholestasis doesn’t come with a rash.

Due to the pain, I started working from home three to four days a week, and eventually had to work-from-home fully. I ended up canceling all appointments and meetings, and just getting basic work done from home was difficult. When my brain ordered me to type, my hands would instead scratch. I lived in a pain-filled fog.

My doctor initially told me to take the occasional day off. When that didn’t help anymore, and I knew I couldn’t last another week trying to battle through, I started my leave. I still tried making it to important social events. I went to my niece’s baptism, another niece’s birthday, my father’s birthday, and I even moved my Baby Shower to my house.

While my guests made light of my scratching and ice baths, they also wondered where I was. I spent most of the day in a cold shower. After eating delicious food, that night my liver was overclocking it and I spent the entire night pacing downstairs, alternating between crying and cursing, my husband running around trying to ice me, massage me, anything. The dogs were hiding. I was exhausted and couldn’t even scratch anymore. I just prayed.

At my niece’s birthday, my husband stole a cooler for me to ice my skin down. At my dad’s birthday party, my husband had to run out because I quickly used up all the ice in the house. I grabbed my sister’s hand and squeezed as I tried not to cry out as I waited for him to return.

The last three weeks I was pregnant, I never left my house except to see doctors. I didn’t take calls, answer texts, or allow anyone to come to my home. This especially pained my husband, because I was unable to prepare anything for the baby and the nursery, and he had to work for the both of us.

He was so exhausted to the point he took sick days nearly every week. Every day, family asked if they could come over to take care of me, saying I could just sleep in my room and they wouldn’t come up. But they failed to understand I wasn’t that kind of ill.

At a certain point, I was no longer me. It was like my spirit had left and all that remained was a trapped animal. Time stopped and instead of experiencing hours and days, it was all just one eternal unbroken moment.

Photo by Jessica Scrivener.

The first time I was brought back into being was when I had my first contraction. The contractions and space in between were beautiful, amazing glimpses of relief from the misery I had been feeling non-stop for months.

I got the warrior birth I wanted and felt more empowered with every painful moment that brought me closer to the end. Since the pain was managing the itch, I avoided managing the pain. I went through labor and transition and then asked for the epidural when it came time to push.

Still, people never cease to find a way to ruin an experience, particularly a female experience. I felt like punching those who told me I was lucky for an easy delivery. But okay, one blessing is that it’s rare for us itchy moms to be stuck in labor for days (it’s because your placenta is DYING). However, you are still enduring labor, with additional Pitocin, after weeks or months of trauma and illness.

Also deserving a good punch are the parents who tell you how lucky you are you to miss that last month of pregnancy. Because by then they “were just over it”. The women with ICP experience a wide range of discomfort from irritating to disabling. Many are forced to go on disability. Not maternity leave, medical leave. Please, never compare your healthy pregnancy to a sick one.

One more punchable person: everyone who joked “just wait until the baby comes!” when I disclosed I wasn’t sleeping during my illness. I averaged an hour or two of sleep a night, and most of it was broken up.

The average human adult needs an hour and a half for one cycle of sleep, and about four or five cycles per night. I wasn’t even getting one. I didn’t have insomnia, I was being kept awake. Sleeping pills did nothing. The effects of this doubled exponentially. I was hearing and seeing things that weren’t there, had memory loss, and lost impulse control (see the paragraph about the zester).

In fact, after the baby came, I had so much energy. Even one uninterrupted hour of sleep gave me as much rest as a spa weekend. While my husband went into full new-parent-zombie mode, I was exercising, cleaning, cooking, pumping and dancing with my new baby.

No question — the itch and sleeplessness were the worst parts of ICP. The worry, depression, and other intense moods that come with constant pain and lack of sleep were second. I was not as worried about losing the baby as maybe I should have been. I trusted my doctors because I had no energy, emotional or physical, to do any less.

Which is why I am so grateful that I was blessed enough to have knowledgeable and compassionate doctors. In my support groups, there was no end to the women who had to fight every day for their children’s lives because their doctors were either too arrogant to listen to their concerns or too clueless to effectively treat them.

“You’re itchier at night because you’re thinking about it more.” False. Your liver has its own circadian rhythm (I’m oversimplifying it but bear with me), and you can be fast asleep and woken up by the itch. Plus, this kind of makes it sound like the itch is just in our heads. It is in our blood, thanks. While we’re on that note, it’s nice you’ll prescribe anti-histamines, but they won’t do anything.

“You probably won’t get it again in your next pregnancy.” I don’t know if they’re just trying to give us hope but this has a 90 percent recurrence rate.  Hormonal birth control options get pretty limited. Many experience mild or uncomfortable itching during the natural hormone fluctuations in their cycles. I am typing this with itchy fingers that make me yearn for menopause.

When it comes to the stories these women told me in my support group, their doctors had all sorts of misconceptions, and these women were forced to educate their health care providers while dealing with the itch.

Now for me, the itch faded within days of giving birth. Over a year later, my liver has still not recovered, and I have had every imaginable test done to the poor little guy. It doesn’t matter how great your doctors are when they don’t have the research to do their jobs, and there just isn’t enough research regarding ICP.

I am still struggling with coming to grips with the whole experience. How can I justify putting my firstborn through a second pregnancy? Will he have long-term health consequences? Will my friends and family support me the next time around? How on earth do other moms do this repeatedly? What’s wrong with me and why did my body betray me? What kind of mother has a womb that kills?

Most of these questions are illogical. One positive that has really stuck with me is gratitude. It is so easy to take your freedom and your health for granted.

We need to continue fighting for those who have neither. We need to empower doctors with knowledge and an environment that gives them the support and resources to perform their best. We need to be invested in researching illnesses that aren’t always cute or trending. We need to be kinder to those who are ill. Most of all, I owe my husband big, and my kid owes me!

Please check out ICP Care for more information. I am not affiliated with them but I could not have survived without their support. They are constantly on the lookout for current treatments, information, and myth-busting. They run support groups also and are simply awesome and could use any support you can offer.