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Shared Stories of Intrahepatic Cholestasis of Pregnancy (ICP)
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Lindsey

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 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.

 
Larisa's Prematurity Awareness Day ICP story

Lyndsey D’Errico, Florida

In December 2013 I recall telling a friend I may be pregnant because my hands were itching and I seemed to remember that my hands itched in my two previous pregnancies. Sure enough, I was! I don’t recall the itching again until I was 35 weeks pregnant. It was insane, all over my body, keeping me awake at night and miserable in the day. One frantic evening I searched the internet for ideas on why I may be this itchy and the ICP Care website came up. What was described was exactly what I was experiencing. I joined the Facebook page and asked all my questions. At my next appointment I mentioned the itching to my OB. I didn’t have to mention Intrahepatic Cholestasis of Pregnancy because they immediately suspected it and tested my Bile Acids. They came back positive but not super high (they didn’t tell me the exact number). I was put on Ursodiol and scheduled for induction at 38 weeks.

The day came and things seemed to be going slow so they moved me out of delivery and to a ward. The midwife said she expected to not see me back in delivery until the next day. Less than an hour later my contractions were 3 minutes apart but I was coping well with them. I got up to go to the bathroom and felt a gush. Thinking it was my waters breaking, I looked down to see blood everywhere. I had had a placental abruption and was rushed for an emergency c-section. My beautiful Warrior Baby, Cole was born healthy in September 2014.

We moved from Ireland to the USA in 2015 and when we felt settled, we decided it was time to complete our family and have the fourth child we had dreamed of. We didn’t have to try… our baby was conceived straight away and we were delighted. I researched OB’s that were aware of ICP and the correct protocol, as I know many are not, and settled with one that convinced me of this. At 5 weeks I started to itch. Believing it may be psychological, I waited for my first appointment and had my bloods drawn. My Bile Acid levels were fine but they checked periodically as the itching continued and progressively got worse. At 27 weeks, I was finally diagnosed with Bile Acid levels of 11. I was put on Ursodiol and my Bile Acids never rose higher. I was given weekly NSTs and weekly BPPs and scheduled for delivery at 37 weeks.

At 35 weeks baby failed his BPP for not taking practice breaths. The technician struggled to get him to move so that she could get the results she needed but I was assured everything was okay, even though I was panicking. The following week, he failed again for the same reason and again I was assured he was fine. That night my husband and I toured the maternity dept. of the hospital. I asked whether the baby was taken away after a c-section because that is what happened with Cole. The lady said no, that they would give the baby straight to me and never be taken out of my sight. I fought back tears of happiness because I had been so sad that I didn’t get to be with Cole after he was born.

The following evening, on a Wednesday, I got up from the dinner table and commented that I felt some slight cramps. Nothing that I hadn’t felt before, so I got the children to bed and settled down for the evening. The cramps kept coming but they were not severe or regular. We turned off the TV and headed to our room and I pointed out that this time next week, we’d be so excited… our c-section was booked for the next Thursday morning. I sat on the bed feeling a little more uncomfortable so decided I’d go and watch TV again for a while. I sat down and about two minutes later felt a gush. I jumped up and looked down to see history repeating itself. This time though I was not in the hospital and by the time the ambulance crew got me there and after a lot of searching for my baby’s heartbeat, we were subjected to the phrase that no parent ever wants to hear “I’m so sorry. There’s no heartbeat.”

We were told the focus now was on saving my life and I was taken straight to surgery, where my sweet and beautiful son Gabriel was born at 36 weeks on February 9th 2017. In the far too quiet operating room, he was handed to me, just like I had hoped he would be the day before. Perfect in every way other than that he was still and quiet. It was after midnight and I slept with him in my arms, waking in the morning to his beautiful face. The hospital sent a photographer to capture some beautiful pictures of Gabriel with his family and we were able to keep him with us for a couple of days.

The hardest thing I have ever had to do was to leave my son behind when I was discharged from the hospital. We don’t know whether ICP caused the placental abruptions but the two pregnancies where I was diagnosed with ICP ended the same way. I never had my Bile Acid levels tested at the end of either pregnancy, so we don’t know what they were. We have had differing opinions from doctors with some saying they don’t know if ICP was the culprit and a specialist saying it absolutely was.

When I look at Cole now, I realize how very lucky we are to have him. As far as Gabriel is concerned, we love him and miss him and feel the only right way to parent him now is to spread awareness of this horrible disease that we believe took him from us. Never, ever ignore the itch! All it takes to diagnose ICP is a blood test. A blood test that could save your baby’s life.

 
andrea shared story

Andrea McConne, Australia

I was in my first trimester with my first baby in 2014. This had already been a stressful time with fertility treatment and a previous miscarriage at 11 weeks, so we were already concerned parents with a long road to travel.
I was experiencing some incredible itchiness of a night time and mentioned it to my fantastic OB at my 12-week appointment. He wasn’t concerned and luckily I hadn’t googled anything!!!! He asked me some routine questions about problematic pregnancies for my mum and sister but I didn’t think anything of the conversation, he did say he would do some additional bloods to rule anything out but he just thought that it was normal stretching skin. Although at this stage the itch was only across my chest and mostly of a night time. We came to realize that he was clearly a very vigilant and well educated in ICP. At 14 weeks I received a phone call from him that I did in fact have ICP with a bile acid of 12, I was placed on URSO straight away and stupidly spent far too much time on Google. Luckily I found the ICP Care Facebook support group and was able to calm my nerves by asking a lot of questions.
After much argument with the private script system in Australia I was able to get URSO for $38 for 3 boxes instead of $140, seeing as I was only 3 1/2 months pregnant and taking 4 bills a day this was a big financial relief. A much appreciated coordinated effort with lots of phone calls made from both my OB and Pharmacist who lost their cools several time with the system that gives permission for private script approval in Australia. I still have boxes of URSO stashed away just in case 😉

I am lucky to say my itch remained bearable yet moved to my stomach and sometimes my hands, although I feel that I never got it as bad as some others. Keeping cool was key for me and lucky I was having a winter baby, I would never chance a pregnancy in an Australian summer if I can help it. I found moo goo creams have some relief and also hydrogel breast pads placed in the fridge also assisted, anything that kept my skin cool allowed me a little more relief and therefore sleep.

The highest my levels ever went were 14 with a few weeks left to deliver, my OB continued to be vigilant and developed a plan we were really happy with, blood tests monthly and fortnightly for bile and liver function, growth scans at every visit, a few CTG’s thrown in towards delivery, growth steroids for Bub and a c section delivery (my choice) at 37 weeks with back up bloods ordered and my placenta sent away for investigations. Our daughter Audrey was born without complication, a good size at 6 pound and without any of the respiratory issues we had prepared ourselves for.
Even with a surprisingly lucky run in with ICP my placenta still showed what was described as ‘black/dead spots’ something that chills me still as I was considered so well ‘controlled’.
My LFT and bile acids had returned to normal by follow up tests at 4 weeks post-delivery.
We were so lucky with our ICP story, I know many are not as lucky as we were and I feel that it was purely the knowledge and experience of our OB who made our journey such a positive experience. We are currently 12 weeks pregnant with number 2 and unfortunately our original OB has now retired but we seem to have found a new OB that will be just as vigilant and has agreed to a similar plan as our previous doctor.

 
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.

 
Crystal

Crystal Eowan, Utah

My name is Crystal. I live in Utah with my husband Ron and two living children, Tristyn (16y) and Ronnie (19m). I am getting out of my comfort zone and sharing my experience with Intrahepatic Cholestasis of Pregnancy (ICP) in hopes of educating those who have never heard of this condition, and to let anyone suffering from ICP or a loss like mine to know they aren’t alone. I am also a true believer that my daughter will continue to live and matter in her story and memories.

Intrahepatic Cholestasis of Pregnancy (ICP) is a condition of the liver. It is not dangerous to the mother (only uncomfortable) but can be very serious or deadly to a fetus. More information can be found at www.icpcare.org.

Ron and I dated for seven years before finally being ready to settle down and grow our family. We were married in 2015 and wasted no time. Two months after saying “I do,” two little pink lines confirmed I was pregnant. Our family was thrilled. As these things go, we soon found out we were having a girl. Her name had already been picked out long before she was a twinkle in our eye. Eleanor Nichole. She was named after Ron’s late grandmother and his niece who had passed away at a young age. There was nothing unusual about my pregnancy for the first trimester and a half. Besides the typical nausea and discomforts, it was all going well. My appointments were great, her and I were both growing and healthy as could be. It wasn’t until about 27 weeks that things started to feel different. My hands and feet were itching. This wasn’t an itch that I could scratch and it wasn’t a typical swollen “changing body” itch either. But I brushed it off because it would come and go. I would ask my girlfriends who had babies or were currently pregnant if they had this happen to them before. Most of them said no, or that itching during pregnancy was normal. I wasn’t worried. As the weeks went on the itching got worse. I was constantly scratching, rubbing my hands together, and scraping my feet on anything that would normally hurt me. On top of the intense itching, I was having increased upper right quadrant pain (sharp pains near my gall bladder). I had those pains since being pregnant with my daughter 16 years ago and never thought much of them because they passed quickly, but they were much more frequent. I googled the two symptoms and was led to pages and stories of ICP.

At my next doctor’s appointment, I mentioned my itching and my google findings.
My doctor seemed flippant about it, telling me that Cholestasis usually involved itching around the ribs and stomach and I quote, “It’s not very common and we would have to draw blood and it’s a whole ordeal.” She was leaving out of town for the next few weeks and I was brushed off. I left the appointment being told that I should stay away from “Dr. Google” and that my hands were likely itchy from swelling and carpel tunnel. I had no reason not to trust my doctor and left feeling a little silly that I thought I could have something so serious.

No more than 3 days later my itching got worse and had spread everywhere… my legs, my breasts, my neck, my armpits, my scalp! I was scratching my neck until it bled. I was turning the shower extra hot then really cold for the tiniest bit of relief and I wasn’t sleeping. I honestly felt like I was going to have a mental breakdown and was losing my mind. I was ashamed to leave the house because my scratching made me look like a pregnant addict. I couldn’t control my scratching! I knew deep down there was something else going on, something serious. I called the doctor’s office on a weekend, knowing my regular doc was out of town and asked for the blood test. Five days later my suspicions were confirmed. My bile acids were around 40 and a prescription for Ursodiol was called in for me to pick up that afternoon (that was an ordeal in itself). The pharmacist didn’t seem to know why a pregnant woman would be taking Ursodiol and was questioning me on it. Then, my insurance company denied the original dosage I was prescribed. The on-call doctor lowered my dosage ensuring me that it would still be fine and I was finally on my way. I left feeling hopeful but still devastated that my body was literally poisoning my baby.

One week after getting my actual diagnosis and prescription I spent a Saturday getting a pedicure, lunch, and the final items needed for our baby girl. I just knew she was going to be born earlier than planned. I was prepared to call my regular doctor when she returned from her vacation to schedule an induction that week now that I knew going 40 weeks was not an option with ICP. I couldn’t wait to meet her. Ron, Tristyn and I got home after a full day of running errands and keeping busy that I hadn’t noticed my decreased movement and kicks. Something that still haunts me is not knowing when her movements actually stopped that Saturday because I was so busy and moving around.

On Sunday morning March 13th, 2016 at 10:56 am our beautiful Eleanor Nicole was “born sleeping” (a term I absolutely hate using). I was just under 37 weeks gestation. Eleanor weighed 7 lbs. 9 oz and was 21 inches long. Her hair was brown with a hint of red and she looked just like her daddy. I can still feel her lashes on my lips when I kissed her. She was my hardest and longest labor and I remember bits and pieces of that night like it was yesterday. Our hearts were broken and our lives forever changed. That night was a true nightmare for Ron and I. We still wonder how we survived something so traumatic. At the same time, I am forever grateful for the people who came to take pictures and make mementos for us to keep and cherish forever. The week after Eleanor was born is a blur to me, but I am so blessed to have a husband who loved and took care of me in the hardest time of my life. I am also so grateful for my mother and mother in law for helping us and being there for anything we needed.

As expected, my itching was gone a day or so after the birth. The only time my bile acids were tested was when I went in for my original blood test and after she was born. Because of this, they had dropped significantly. I will never know what they were or if they were dangerously elevated when she quietly passed away. The original level (40s) would not be considered extreme. Eleanor’s autopsy noted the ICP as a cause of death and meconium staining because of the stress she was under. It was also noted that I had a 40-90% chance of getting ICP in any subsequent pregnancies.

I am happy to write that my story does have a happy ending. After losing Eleanor I joined the “Itchy Moms” Facebook group and searched a TON of information on ICP. I changed to a doctor that was recommended by other itchy moms and now have the most amazing beautiful son Ronnie. My doctor is amazing and listened to all of my concerns. We had a plan in place from the beginning. I was tested frequently (even if I had the slightest itch) and started non-stress tests at 30 weeks. I never got ICP with Ronnie. I went into the pregnancy fully expecting to have it again and still can’t grasp why my levels never elevated with him. But, I am still at risk for any other pregnancies and now know that my daughters have a higher chance of developing the condition. Ronnie was still induced early because of my high risk and he has brought joy to our lives since the moment he started crying in the delivery room.

If you’re pregnant and itching or if your significant other is pregnant and itching, if you know of ANY PREGNANT WOMAN who is itching, please don’t take it lightly! Trust your instincts and push for blood tests if you are not comfortable with the answers you are getting. Know the symptoms (itching, upper quadrant pain, dark urine, pale stool, jaundice) and tell all of them to your doctor. Most importantly, know that my story was the worst outcome and it doesn’t mean that yours will be. Intervention and treatment are available! Don’t ignore signs or symptoms and fight for you and your baby!