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Pregnancy Stories

Shared Stories of Intrahepatic Cholestasis of Pregnancy (ICP)
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Yomarie Miranda, Florida

In 2015 after eight yrs. of my first successful pregnancy I got pregnant again at 37 years old. This was the first child of my husband and I. The first boy for my husband. Everything was fine with the exemption that I was high risk for my age. At 20 weeks, I started itching on my feet, arms, and the sole of my hands. I went to the doctor and they did a blood test for bile acids with the results being 8.9, however my doctor never repeated the bile acid blood test. I was diagnosed with PUPPP instead of Intrahepatic Cholestasis of Pregnancy. Intrahepatic Cholestasis of Pregnancy (ICP) has risks to the baby while the other does not.

The weeks past and at 31 weeks on July 4, 2015, I woke up and he wasn’t moving anymore. We went to the hospital where I heard the worst words that a mother can hear “there’s no heartbeat I’m so sorry”.  I started screaming as if I was never going to stop.

After dealing with infertility issues, imagine how I felt after three years of many attempts. My baby boy Ryan was stillborn via c-section. After all the tests after I lost him is when I was diagnosed with ICP.  We were devastated and my poor son was very depressed asking why his brother died. My husband and I didn’t want to see anybody and decided to cremate our baby. His ashes are with me and I still cry and will miss him for the rest of my life.

Then two yrs. later I became pregnant again with my rainbow baby. This was a completely different pregnancy full of anxiety and depression. Then, again at my 20 weeks pregnant, I started itchy on my hands, my feet and my belly. I called the doctor that night and I was sent urgent to get a blood test in for what they explained could be ICP. I went the next morning and five days later they called me to let me know my bile acids were borderline in 9.6 and they were going to start me on Ursodiol 900 mg at day. They would repeat the bile acids blood test in four more weeks. When they repeated my bile acids the results increased to 14 and confirmed Intrahepatic Cholestasis of Pregnancy.

I was very scared; I cried a lot that day I didn’t want to lose my baby like I lost my previous one. I feared for my baby. Before each appointment, I silently cried in my car in the parking lot of the doctor’s office and prepared my heart for the worst, while praying that God would guide the way for the best possible outcome—that my baby would live to see the outside of my womb. Each appointment, each ultrasound, each echo of my baby’s beating heart left me wondering if it would be the last. They repeated my BAs test every four weeks and every time my levels increased. My doctors increased my Ursodiol dosage to 2,000 mgs daily and even with that dose my levels increased more and more. I had constant monitoring my baby. My baby’s heartbeat was the only sound that gave me peace but my traumatic memories were there.

Due to the Cholestasis of Pregnancy I started feeling premature contractions, since my 26 weeks that I ended in the hospital several times. Then at my 34 weeks appointment my levels were 36. The week after that at my 35-week appointment, I was hooked up to the machine like every week and then 20 minutes passed when my doctor told me I had contractions every 1-2 mins and then suddenly my baby’s heart rate started dropping significantly. I started screaming, as soon as my doctor saw his heart rate level, I was sent to the hospital to have a C-section. They watched the baby so close and then the next day, I was brought at 1:00 PM to the operating room. The NICU staff were waiting for me to start. Then the anesthesia started, I was so nervous and praying that the outcome was positive. I just wanted to see my baby and know that everything was good. I thank God for my baby’s life. My baby was born healthy, with no breathing issues, no NICU stay necessary. I never had ICP in my 1st pregnancy only happened in my 2nd and 3rd pregnancy… I’m so glad I advocated for my baby and that this time I was heard.

 

Stephanie K

Stephanie Kauitzsch, Texas

I had a rather smooth pregnancy in the beginning, with exception to the normal first trimester woes of nausea and fatigue. My second trimester was definitely the classic “honeymoon phase”, where I began to truly enjoy pregnancy. It wasn’t until I was 30 weeks pregnant that I began to feel an incredible itching on the palms of my hands and soles of my feet. I had first attributed the itching to dry skin or hormones, but the itching gradually increased to a point that was almost unbearable.

I presented my symptoms to my Obstetrician who immediately informed me that it was most likely Cholestasis of pregnancy, but a blood test would confirm this diagnosis. I had never heard of this condition before. My results returned and my bile acid level was elevated in addition to my liver enzymes. I was terrified of this condition, not for myself of course, but for my baby. I remember crying in fear and being overtaken by worry, until my Doctor calmly explained that she would closely monitor myself and the baby on a weekly basis and I would need to be induced around 36 weeks. She did just that. We did weekly sonograms and heart rate checks. It was the highlight of my week to hear the beautiful sound of my precious baby’s heartbeat and see him safely growing and developing in spite of this disease. I itched and itched all throughout the day, but the itching intensified in the evenings.

The only relief was scratching my hands and feet with a hairbrush and applying ice packs to numb the nerve endings. At 36 weeks, I was induced with pitocin and labored for almost 24 hours, however I would not dilate past 8cm. My Doctor advised me that the best option was to move forward with a c-section. 30 minutes after signing the consent forms, I heard the precious cry of my first-born child. Tears streamed down my face and I knew all of the itching and discomfort was worth it to hold my 5lb. 6oz., absolutely perfect and healthy baby boy.

Lindsey Duclos, New York

I woke up in a fog with a strange feeling that I wasn’t pregnant anymore. Almost like I woke up in the middle of a dream. I reached down and my belly was still there, but I couldn’t shake this weird feeling. I was 39 weeks along with a perfect pregnancy. There was no pain, no issues at all besides this strange feeling I could only describe as feeling empty. This was the day our lives changed forever.

Up until this moment we had what we thought was a picture-perfect pregnancy. This was our first child and we couldn’t wait to meet him. Early in the third trimester, I started having pain under my ribs on one side. I brought this up at my appointment and was told to “ditch the underwire” and get a new bra. Fast forward to 37-38 weeks, I started experiencing an intense itch on my palms and soles of my feet mostly at night. After one rough night of itching I turned to google to see if I could find any explanation. I searched “itchy hands and feet pregnancy” and the first thing that popped up was Cholestasis of Pregnancy- a very serious condition for women late in pregnancy that could result in stillbirth if not treated properly. Luckily, I had an appointment later that same day and decided to bring up my concerns when I went.

Cholestasis of Pregnancy generally appears later in pregnancy as hormones rise. The rise in hormones causes the liver to malfunction and the bile from the liver spills out into the bloodstream creating a toxic environment for the baby. Symptoms can include pain under your ribs (RUQ pain) and most notably itching of your hands and feet at night. Both symptoms I had and reported to my OB. Blood work, specifically Bile Acid levels of 10 or greater can be used to diagnose ICP.

The doctor never came in to see us. I mentioned to the NP about my symptoms and what I found online about Intrahepatic Cholestasis of Pregnancy (ICP). She knew enough about ICP to know that the itching presents without a rash and motioned for me to show her my hands. She asked if I had a rash and noted that I did not. We had to insist to have my bile acid levels checked. She did not seem concerned at all which regrettably led me to believe this couldn’t be as serious as what I read online. We were told itching is common and can be from skin stretching as I was 38 weeks and 4 days along at this point. She sent me home to drink water with lemon and to eat watermelon. I had my blood work done the next day and would not have the results back for several days.

Four days later I woke up with a strong instinct that something was off. I thought it was in my head and if I could get the baby to move I would feel a lot better. I got up, took a shower, went for a drive, all of the things that normally got him to move with no luck. It was Easter Sunday and my doctor’s office was closed so we decided to go to the hospital just to be safe.

When we got to labor and delivery the nurse quickly used a doppler and said she would be right back with the doctor. The doctor came to perform an ultrasound and I will never forget the moment she turned to me and said “Lindsey I’m so sorry, there is no heartbeat”. I remember my husband grabbing my hand and my mother dropping to the floor crying. In that moment, I felt nothing. In a state of shock, I looked at the doctor and calmly said “Okay, where do we go from here?”

I was induced and delivered a beautiful baby boy later that day. Thomas Joseph Duclos was born on April 16th, 2017 weighing 6 pounds 1 ounce and 21 inches long. Perfect in every way besides the fact that his little heart was no longer beating.

It wasn’t until about a day or two later when the shock wore off that it hit me like a ton of bricks. All of the sudden I recalled what I was reading less than a week before about ICP and the dangers it poses to an unborn baby if it isn’t treated properly including stillbirth. Women with this condition need to be medicated, monitored closely and most importantly induced by 36-37 weeks as the risk for complications and stillbirth rises greatly after 38 weeks.

After our son passed away, our doctor’s office was in denial and told me I did not have ICP. Although they did say they were “sorry for not taking me seriously because I was so healthy” and she said that “they have learned from their mistakes.” My son, their mistake. My bile acid numbers came back several days after our son passed away at 9.7 with 10 being the diagnostic level. Again, these levels were taken several days before he passed away so it is unknown what they may have increased to. Bile Acids can be very unstable especially late in pregnancy and can fluctuate hour by hour. A 9.7 at noon can increase to extreme levels later that same day, especially if not medicated.

A little over a year later we found out we were pregnant again. This time around we had an amazing team at Albany Medical Center’s Maternal Fetal Medicine Group. They were so patient throughout my entire pregnancy. I was just over 31 weeks along when I received a call after 9pm on a Sunday night from the doctor to let me know that my blood work came back positive for ICP and I needed to start medication ASAP. That rare condition that our first doctor’s office was adamant I did not have was back. ICP has a 40-90% chance of recurrence. I was overwhelmed with emotions hearing this. I was scared to battle this again, but relieved to know what battle I was fighting. I was happy to finally have confirmation that this is what happened to our baby boy, but also devastated knowing that this is preventable if taken seriously and treated properly. I was angry that our previous doctor’s office wouldn’t own up to their careless decision and tried to make us believe his death was just something unexplainable that happens. I chose not to use the term “careless mistake” because I feel strongly that the NP was knowledgeable enough about the condition to know it presents without a rash and what testing is required for diagnosis and purposefully made the decision to send us home knowing how dangerous it could be given our 38+3 gestation. At the very least, we should have been sent to the hospital for monitoring.

I was prescribed URSO the next day and they scheduled my induction for 36 weeks. I had biophysical profiles and non-stress tests twice a week along with frequent bile acid testing. My bile acid levels continued to rise up into the 20’s even after four weeks on the medication.

We welcomed a beautiful baby girl on March 11th, 2019 named Parker. She was 5lbs 14oz and perfectly healthy.

“It is not a path of my choice, but it is a path I must walk mindfully and with intention.” Our intention is to spread awareness and to save other families from experiencing what we had to endure. Losing a child is hard. Carrying a subsequent pregnancy knowing this could happen again was as close to unbearable as you could imagine. I often wonder how our lives would be different if we saw a different medical professional that day or insisted to be heard. Trust your instincts. If your medical team is not listening to you then you need to find a new team. Your baby’s life could depend on it.


Stephanie Nuñez, California

It was week 28 when I started itching. One night, I was so itchy I googled “intense itching during pregnancy”. First thing that popped up was “Intrahepatic cholestasis of pregnancy”! After reading about it, I knew I had it. I remember telling family, I think I have this. I had an upcoming appointment, and I told my doctor. He said “we’re going to test you but try Calamine lotion & Zyrtec and let’s see if it helps for the meantime until the results come.” I remember saying “It’s not going to.”  He did have me try Calamine Lotion & Zyrtec but he did request blood test for cholestasis also. It didn’t help.

It seemed like forever to get the results but I received them and I did end up having cholestasis of pregnancy. The itch was unbearable. I remember saying “I’d rather be in pain than this itchy!” I would leave scratch marks all over my body. I would bleed because of how bad the itch was after scratching. I remember crying at night because no matter what I did, the itch wouldn’t go away. I would stay up all would night scratch keeping my husband up because of my scratching. He would even help me scratch my back.

I would have two appointments every week. One week it would be 1 appointment for the non-stress test (sometimes 2), one with the gastroenterologist, the next week it would be 1 appointment for the non-stress test again & 1 appointment for the perinatologist specialist. I knew I had to be induced by 37 weeks. But our plans were interrupted at 35 weeks, on December 21st while taking a nap my water leaked. It didn’t break completely. I went to the hospital and they confirmed that it had leaked. I delivered my first son on December 23rd, he stayed in the NICU until January 1st weighing 4 lbs. 14 oz.

With my second, I developed ICP at 30 weeks. I knew more about it this pregnancy and knew what to expect. I had another little boy but this time, at 37 weeks & 3 days. November 7th, 2019. He weighed 6 lbs. 5 oz. with no NICU time but we had to stay in the hospital another day due to his bilirubin. My boys are 2 years & 11 months apart. I’m so blessed they are still here and healthy.

I am so grateful for my Doctor and his Medical Assistant (Dr. Accetta & Priscilla, Bakersfield CA). I have read that some doctors do not know about ICP. My healthcare providers were aware of cholestasis and I know with their help, that’s why they arrived safely.

Being a first-time mom, it was difficult going through all of this, but I would pray & be comforted. Even though I knew the seriousness of having ICP, I knew I had to trust God. I know with parenting we are so quick to rely on our strength and guidance for our babies’ lives, but they are his kids before ours and I had to remember that. I pray for the ones that have lost babies.  I also pray that ICP awareness is spread and talked about more because the more people know about it more lives will be saved. I was told itching was normal in pregnancy, but my momma instincts said different. Listen to your instinct’s mommas.

Through the itch, came miracles. Through the tears, came smiles.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10

Christa Shared Story

Christa Jensen, Utah

At about 30 weeks, I began itching and asked my doctor about it. I was itchy everywhere. He told me to avoid hot baths and take benedryl. At 33 weeks, I went to an all you can eat buffet and that night I could not sleep because the itching was so bad. Finally about 3AM, I went online searching for itchy skin during pregnancy. As soon as I read about Intrahepatic Cholestasis of Pregnancy on ICP Care / Itchy Moms I knew that’s what I had.
I called my OBGYN and went in for a blood test. They put me on Ursodeoxycholic Acid and said the results would come back in a few days. They called a few days later and confirmed the diagnosis and my BA level were at 37. I came in for a non-stress test and the baby was not very active and I started having contractions. I was sent home but advised to stay off my feet. That night I went into labor at 35 weeks. I went to labor and delivery and no one had heard of ICP. They gave me a shot to stop labor and sent me home. The next day I went into labor again. I went back to the hospital and finally was admitted. Many hours later Austin was born weighing, 5lbs 11oz. As soon as he was born he stopped breathing. They had to call a “code blue” and call a newborn life flight team to airlift him to another hospital with a high level NICU. He was diagnosed with Respiratory Distress Syndrome; he was put on a ventilator for 5 days. He also had an infection that required antibiotics, and jaundice. For me the itching went away right after giving birth. After 14 days in the NICU and 11 days at a children’s hospital with RSV, my baby is now older and doing great. Although it was the hardest thing I have ever gone through, I am grateful to have the education, and support of such an amazing website.

Jennie Terranova, Oregon

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.

My husband and I have just decided to try conceiving again. It has been a long process of acceptance and figuring out what we can do moving forward to experience the joys having a living child brings. 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 ICP 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.