Jennie Terranova, Oregon
Jennie Terranova ICP Story

I’ll never forget the night of September 21, 2017, the first day of my third trimester of pregnancy with my son Pablo Valentine. I remember so vividly being weak on the bathroom floor with bile coming out from both ends. It was yellow, acidic, and burned like nothing I had ever experienced before. It ripped the skin off of my bottom. I was terrified of my body’s inability to hold down food or liquids. It was 1am. I did my best to disinfect the bathroom floor and toilet for fear my horrific illness might be contagious, and then woke up my husband to take me to the ER.

When we arrived at the ER and described my symptoms, I was encouraged to go to Labor and Delivery. I did not understand the suggestion. I was not having any labor symptoms – it felt more like the worst stomach flu I’ve ever had. Weak and confused, I asked if I could just be seen at the regular ER, and since I wasn’t having contractions, the receptionist agreed.

It felt like everything happened so fast while I was in the ER. I was weak, exhausted, confused, and terrified for my baby’s life. The doctor who saw my explained that my liver enzymes were “very elevated” and that “sometimes happens during pregnancy” He assured me that I was going to be okay, and that I just needed to take Tums and anti-diarrheal medication.

My follow-up appointment with my OBGYN was a few days later. Although the vomiting had calmed down significantly, I was still experiencing diarrhea, nausea, weakness, and lack of appetite. I had lost 15 pounds: nearly all of the weight I gained in my first and 2nd trimesters. I explained to my doctor what happened the night I went to the ER, and told her I was scared my baby was going to stop growing because I felt so sick and unable to hold down food. She told me that I had acid reflux, which happens in the 3rd trimester, and that I should take Tums, and drink lemon juice.

I started drinking lemon juice and taking Tums. I struggled to eat. Everything made me feel sick. Luckily, I enjoyed the flavor of Pedialyte, and was good at making ginger broth. It was around this time that I started itching a lot. My hands, arms, and feet were extremely itchy. I blamed the itching on my allergy to cats, and we had 3 of them in our house. It seemed the likely culprit.

My primary care doctor (not my OBGYN) saw the records from the ER and called me. She insisted that I come in… I was so nauseous and confused that I didn’t understand why her office kept calling me until I picked up the phone, but when I went in for an appointment with her, she told me that I needed to be prepared to have a premature baby. I wasn’t sure why she said this. 2 days later my labs came back from her office, and my liver enzymes were still extremely high. She put in a request for me to have an ultrasound of my liver performed. This was nearly 3 weeks after my ER visit.

After my primary care doctor asked for an ultrasound of my liver, I asked my OBGYN if this was something, they would want me to do as well, and if this was “normal” protocol for someone experiencing what I was. My OBGYN sent me to Labor and Delivery to have more labs run to figure out what was going on.

I had such a positive experience at labor and delivery! They had me hooked up to a fetal heart monitor that my baby kept trying to kick off of me! Everyone I came into contact with there showed concern and adequate leadership skills for helping address issues like my nausea, my lack of appetite, my weight loss, my weakness, and my newly found yellow glow. They ran all sorts of tests on me ruling out HELP, preeclampsia, gestational diabetes, hepatitis, etc. When everything came back normal my OBGYN asked me if I was itchy. I told her yes, and that I thought maybe the cats were to blame. I was discharged.

November 8, 2017, I went in for my 33-week checkup appointment. My OBGYN took my measurements, and it looked like my abdomen had not grown in 5 weeks. I was encouraged to have an ultrasound to check the baby’s measurements. Luckily, I was able to schedule an appointment with maternal fetal medicine the next day. The person performing the ultrasound was extremely warm and kind, but I could tell something was wrong. Every time she would take a measurement, I would turn my head to look at my husband and cry. I didn’t know what was happening to my baby but I feared the worst. The high- risk pregnancy doctor came into the room. She told me that I was at risk for having a stillbirth. She explained that my baby had asymmetrical intrauterine growth restriction- this is a condition that happens when babies are unable to grow in utero so nutrients are sent to the brain for the baby to stay alive. My son’s head and brain were the size of a 33-week-old baby, but the rest of his body was measuring around 28-29 weeks. I remember feeling shocked and overwhelmed. I remember how horrified the high-risk pregnancy doctor was. I remember feeling warm tears run down my face and not knowing how I had the energy to cry.

The next day was a Friday, and I was determined to see a doctor who could explain to me in detail what was happening. I didn’t want to wait until the following week to start fetal heart monitoring; I wanted it to happen immediately. I spent 6 hours calling different high-risk pregnancy doctors and OBGYN providers to see if anyone would be willing to see me that day, and luckily for me the on-call doctor at my OBGYN’s office agreed to seeing me!

During that appointment 45 minutes went by with 3 different nurses trying to find my baby’s heartbeat. I remember looking out the window in the small room I was in, and crying. I feared that my baby did not make it. The doctor came into the room with a different ultrasound machine where she was able to see my baby’s heart rate drop to 20 beats per minute. She looked me in the eye, told me she wasn’t going to let my baby die, and that I was going to be taken to Labor and Delivery immediately for monitoring.

At Labor and Delivery, I felt a tremendous sense of relief. For the first time in months, I felt like someone was willing to listen to me and advocate for me. I learned a new term: placental insufficiency. I was given steroid shots and experienced one of the most difficult nights of my life. Every time I would fall asleep a nurse would run into the room with other nurses waking me up. Every time I relaxed my baby’s heart rate would drop. I learned another new term: fetal heart failure.

At 9am the new on-call doctor came into my room to introduce herself. She said in a very upbeat tone, “you are going to have a baby today!” and minutes later I was in an operating room being prepped for a c section. Everything happened so fast it was impossible for me to have any kind of emotional reaction other than anxiety! And then the epidural kicked in, my abdomen was numbed, and I could feel hands and tools prying me open but no pain.

At 9:54am my son, Pablo Valentine Pennings was born! I tried to block out the remarks from the surgeon about how heavily I was bleeding, and the awful state the placenta was in. I could not believe how beautiful Pablo was. I was expecting him to look like some kind of deformed alien and to me he looked more perfect than I ever could have imagined. As they held him up to me with the c-section curtain between us I could see his hands reaching for mine. We held hands with the blanket in between us and looked each other in the eye. He received a 9/10 on the preemie ranking. I was told he would spend approximately 4 weeks in the NICU, and then I could bring him home. The day after his birth my liver enzymes returned to normal and my itching subsided.

My primary focus was on appreciating every moment with my son rather than focusing on the fact that he would have died if the on-call OBGYN hadn’t agreed to see me. It felt like a miracle occurred. I was not going to take this for granted. I remember crying myself to sleep every night in my hospital room feeling this enormous sense of relief and terror all at once. I felt like the more I shared what I was going through with my nurses the easier it would be for me to cope with having a baby in the NICU who wasn’t in the same room as I was in.

Emotions aside things were going well while my son was in the NICU. I enjoyed connecting with all of his nurses. I was producing breast milk! By the time he was 3 days old he was completely relying on my milk and no longer needed donor milk. My son was affectionate, had expressive facial reactions, and smelled so good! I weened myself off of the hardcore pain medication from my c section so that I would be able to drive to and from the NICU to spend more time with him. As my body started to heal, I decided I would start sleeping in his room with him every other night. I stayed overnight on his 9th night. I felt so much love for my son. I loved looking at him, I loved teaching him how to latch, I loved his NICU room. It was such a special place.

When my son was 10 days old, he was diagnosed with necrotizing enterocolitis. He died within hours of the diagnosis.

The months following his death I began investigating as much as I possibly could to figure out what happened to me during pregnancy. I believed that my son would not have died from NEC if I did not have pregnancy complications that put him at risk for the disease. I had more genetic testing done, and as I was reading over the “potential pregnancy complications” section I saw that I carried the genes that made me 7 times more likely to have “intrahepatic cholestasis of pregnancy” I’d never heard of cholestasis before. I found the ICP Care site, and as I started to read symptoms of ICP I cried uncontrollably. I knew that this was the thing I had that started in my 3rd trimester!

In January of 2019 I started to have the symptoms I experienced during pregnancy return. I began having difficulty eating, having painful, acidic bowel movements, and terrible throw up burps. Every time I would use the bathroom, I would cry uncontrollably reliving those symptoms again while I wasn’t pregnant. I made appointments with a gastroenterologist who was supportive, and an incredible listener. As test results started to come back normal after my colonoscopy and endoscopy, I looked her in the eye, and told her I was experiencing the same symptoms I had when I was cholestasis during my pregnancy. She ordered more tests and confirmed that I was experiencing cholestasis again. I set up appointments with liver specialists and a very understanding liver surgeon who removed my gallbladder. The surgeon I spoke with told me she wanted to work with my next OBGYN when I decided to get pregnant again to monitor my liver enzymes and help me manage the cholestasis.

I set up appointments with two maternal fetal medicine/high risk pregnancy doctors to discuss the complications I had while I was carrying Pablo. Every doctor I talked to believed that ICP was the cause of my 3rd trimester problems. Every doctor I talked to assured me that they wanted to help me with my next pregnancy so that what happened to my son would not happen again.

When you experience a loss so profound you want to shut down and not think about it or talk about it. I’m hoping that by sharing my experience more doctors unfamiliar with intrahepatic cholestasis of pregnancy and more women unfamiliar with the condition will listen and advocate for women who are itching or experiencing unexplained elevated liver enzymes during pregnancy. My wish is for more mothers to experience the love and bond they have for their babies without the fear and shame that come from pregnancy complications and child loss.

Have you recently been diagnosed with ICP?

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.