Lindsey Duclos, New York
Lindsey Duclos ICP Story

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.

Duclos Family

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.