I lost my twins at 34 weeks due to ICP and the resources, support and friendship that I found through ICP Care and the network of amazing people helped me in incredible ways. Through the ICP Care site, I was able to find a doctor who believed that ICP was a real and dangerous condition, allowing me to find understanding and support during the worst time of my life. I owe credit to this organization for giving me knowledge and courage to safely carry and deliver my rainbow baby ❤️
ICP Care was basically the brain of the operations in my two subsequent pregnancies after a stillbirth due to ICP. Not knowing anything about Cholestasis, I found every answer under the Sun from this organization and the community that follows it. It equipped me with so much information to advocate for myself and my babies. I was able to interact with the members including the medical advisory board, and other mamas in the same situation. Having this community made this scary experience feel like I wasn’t alone in it.
This is an amazing organization that has saved lives through their informative resources and testimonials. I personally was able to advocate for myself during pregnancy with the help of ICP CARE after a tough pregnancy loss when I didn’t know enough about my reoccurring ICP condition.
I cannot thank this organization enough for spreading awareness of an uncommon pregnancy condition that wound up taking my eldest baby, Emily. If ICP Care did not exist, I would not have had the confidence and awareness to speak to my doctor during my subsequent pregnancies and get a proper diagnosis to savey other babies lives.
Thank you ICP Care!
ICP was deemed rare. It wasn't till this group that we realized we are not alone. Not feeling alone in a lonely diagnosis cannot be valued enough. Only those that have lived with this diagnosis understand that it takes you just past the brink of sanity. Having others in this site and the information in this website is invaluable in not only understanding what is happening but in offering hope. I had 3 severe ICP pregnancies over 17 yrs. ICPCARE.ORG is my go to and I recommend all my healthcare colleagues to visit this site as well as any pregnant mom I know. It is that important.
My name is Cheyenne Terry and I am the Texas ambassador for ICP Care. I am a wife and mother of 5, with my 5th due in March of 2023. In 2019, while pregnant with my son, I began experiencing severe itching in my hands, feet, legs, and belly late one night at 10 weeks pregnant. I, of course, turned to Doctor Google and stumbled upon an article about Intrahepatic Cholestasis of Pregnancy. I immediately sent my midwife a late-night message and she asked that I go to her office first thing in the morning for lab work. Within 3 days I was diagnosed with ICP, started taking ursodiol, and had a follow-up appointment with MFM, which embarked me on my Cholestasis of Pregnancy journey. During delivery I had slight hemorrhaging and meconium staining, but my son was thankfully healthy and so beautiful. I became pregnant again in 2020, with symptoms beginning around 5 weeks pregnant. I received my official ICP diagnosis at 9 weeks. My Cholestasis of was severe, and I delivered my daughter at 36 weeks. We both experienced complications, resulting in a stay in NICU. She is now a healthy and beautiful baby girl. With my current knowledge of Cholestasis of Pregnancy, I am confident I had ICP in 2012 with my oldest daughter. I am beyond lucky and thankful that she was born healthy.
If I had not found ICP Care during my first pregnancy, I am not sure I would have known what to expect during it after I got diagnosed at 29 weeks. I began itching at 26 weeks and tried to convince myself it was normal but I could not shake this nagging feeling that something was not right. I began researching and that is when I stumbled upon ICP Care. I was sure, after reading the webpage and joining that Facebook group that this is what I was dealing with and sure enough, 3 weeks later, I was diagnosed. ICP Care gave me the tools and the knowledge to go into my second pregnancy with confidence. I am not sure either of my boys would be here without this organization's help. Now, 3 years after my first ICP pregnancy, I get to volunteer for ICP Care and help other moms who are scared and going through the same thing I did in 2020.
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I have had two ICP babies now and without the help from ICP Care, I am not sure I would have been able to make it through one pregnancy, let alone two. I have two healthy boys now! While I was pregnant with my second, I became a volunteer for ICP Care's support pages to help other women navigate how scary cholestasis can be.
ICP Care played a critical role during my pregnancy, giving me a wealth of knowledge and a great community of people to lean on and relate to. Receiving an ICP diagnosis is scary, and there is much information, each piece just as crucial as the next. As soon as I received my diagnosis, I joined the Facebook group and utilized the website as a resource on everything I could anticipate for the remainder of my pregnancy and what to look out for. Mentally, I don't think I would have been able to get through my pregnancy without the organization and the support I received from moms who have either gone through the same thing or are going through it at the same time as I. Very fortunate to have this organization!
I discovered ICP Care after I gave birth to my daughter in March 2022. I was diagnosed with Cholestasis late in pregnancy, at 36 weeks. I went in for the first of my weekly check ups and felt fine. My midwife asked me how I was doing and I told her everything was good and i was just itchy but shrugged it off. She stared at me and said she will run some labs. I didn’t think anything of it. Later that evening, my husband and I were watching tv and I just randomly wanted to check on my blood results. I noticed my Bile, AST, and ALT all being flagged high and the AST and ALT numbers scared me. I called the hospital and they looked at my lab results and said to come in immediately to deliver.
I had no clue Cholestasis was a thing. We are thought about preeclampsia and gestational diabetes but never about other pregnancy signs to look out for. To this day, i think about if i didn’t mention that i was itchy, would i even have my daughter? I think that also played a part in my post partum depression.
Finding this group was amazing for so many reasons. First, I wanted to help educate others about Cholestasis, especially in the African American community when statistically speaking, maternal death is higher than other races and African Americans tend to be overlooked and ignored for maternal care. Secondly, I felt empowered to help other women and support them to a healthy pregnancy. And thirdly, I truly love the word that ICP cares does for Cholestasis awareness and research. It is helping me learn about the after effect of Cholestasis of pregnancy, my lingering liver conditions, and preparing for a second pregnancy in the next year.
When I was first diagnosed with ICP back in 2017, ICP Care was invaluable. The Facebook group provided such a sense of community during such a stressful and scary time, and the website provided a wealth of information so I didn't feel so alone and underprepared. For my second ICP pregnancy in 2019-2020, I changed providers, and it was so useful to bring educational materials I printed from the ICP Care website to be able to educate my doctors and advocate for myself and my baby.
Now that I have joined the board of ICP Care, I am so incredibly impressed with the work of this nonprofit. The members go above and beyond to support families suffering from ICP and to empower families to advocate for themselves and their babies.
ICP care helped save my daughter’s life. I began itching at 6 weeks and thanks to ICP care I learned exactly how to advocate for myself. ICP was an intensely difficult experience emotionally and physically, being connected to other women who had been in my shoes made all the difference!
At 31 weeks, I started having uncontrollable itching on my arms and legs. Nothing would relieve the sensation and I would shake from the pain of scratching. The itching was mostly at night so sleeping was impossible. One of these sleepless nights, I found ICP Care. The support and research done by Donna and the whole community helped me feel empowered to go to my doctor immediately the next day.
Finally, at 34 weeks I was diagnosed with Intrahepatic Cholestasis. Baby S was delivered at 37 weeks happy and healthy thanks to ICP Care. Through the power of this non-profit, I have found many support systems of women who have healthy babies and who have lost their babies from ICP. This helped me be an advocate for my daughter and gave me the strength to speak up when needed.
The first time I heard about ICP was just before I was diagnosed during my second pregnancy. Because it is a condition that isn’t routinely tested for, it is so important to know what the symptoms are and advocate for testing and treatment. I joined ICP CARE as a board member to support in furthering their mission is to provide patient support and education, raise public awareness, support the advancement of research and improve health care practices.
Being part of ICP Care really helped me to feel more prepared and supported when I was diagnosed again with ICP with my third baby.
During my third pregnancy, I began itching pretty early in my pregnancy. I spoke to my doctor who ran some tests and ultimately diagnosed me with ICP. I had never heard of ICP before and was struggling to cope with all of the uncertainty and symptoms. I found ICP Care online and joined the Facebook Support group. In the support group, I found a wonderful community of women going through exactly what I was going through. Their encouragement and suggestions were invaluable to me. Just over a year ago, I saw that ICP Care was looking for board members and I instantly knew I wanted to be a part of this wonderful organization! Since becoming a board member I've learned all of the ways that ICP Care is working to help families ICP, like educating medical professionals, helping with ICP Care research and supporting families.
ICP Care not only helps provide incredible information and support for expecting mothers with cholestasis of pregnancy - which I experienced with my first birth. But has also allowed and encouraged me to use my voice to raise awareness for ICP. One example is being able to share my story with Hello Postpartum https://hellopostpartum.com/signs-and-symptoms-intrahepatic-cholestasis-of-pregnancy/
At the beginning of December 2016, I started being really itchy in different parts of my body. The first night was hard to fall asleep because I just wanted to scratch and scratch myself. My husband and I thought it was due to weather change, dry skin, and so on. The next morning I had a regular check up appointment with my OBGYN. She was about to leave the room when I mentioned this itchiness to her, and that I had even enjoyed to scrub my face that morning when I took a shower. She asked me if my feet soles and hand palms were itchy. I said no. She grabbed her laptop and ordered some lab tests and asked me to go to the lab afterwards. We asked about them, and she said not to worry until it was actually a problem; she thought it was nothing serious. Of course after hearing this we felt worried. That night I started putting more lotion on my body. We actually thought my itchiness was due to dry skin, because it would stop.
Next week, my OBGYN gives me a call. Robert was working. It was a Friday. However, my memory of it it’s funny, as if it hadn’t been me the one who picked up the phone. As if I had been looking at me from outside the window, not being able to hear and understand what the doctor was talking about. Just words: I’m sorry, cholestasis, high risk, tests, early induction, monitoring, ultrasounds, growth... she gave us an appointment for the next week to talk to us. Having gone to google didn’t help; nor being alone.
I then found ICP Care’s website that helped me understand this condition. I found through them a support on the Facebook Group. I joined both the groups in English & Spanish. They help so many people around the world! The support I got in the group from moderators and members was unmeasurable. They understand what you’re going through.
I now I’m a volunteer of ICP Care to help other people go through a diagnosis, and guide them and support them.
When I first experienced Intrahepatic cholestasis of pregnancy I didn't even know that this condition existed. It was a very stressful situation. Suddenly, at 36 weeks pregnant, I started feeling itchy, and soon it was all over my body. Like many other pregnant women, I was told by health professionals that it was normal to be itchy in the last stages of pregnancy, and I waited and tried to ease the symptoms by taking cold baths and using moisturizers. But my symptoms were not normal, and after 4 days of intense, unbearable itchiness I was admitted to the hospital, and through an emergency induction, I delivered a healthy baby. I was fortunate. Not only because I delivered a healthy baby despite experiencing ICP, but because during those 4 days in which I did not know if my itchiness was normal I found ICP care in a quick search online. ICP care not only provided me with the accurate and science-based information I needed but in their growing community, I found the support that help me go through a successful second pregnancy. I will always be grateful to the people behind this non-profit. ICP care works hard to spread valuable information, help other pregnant women to advocate for themselves, and to grow a community that offers invaluable support before and after experiencing ICP.
I became a board member for ICP Care after I had my second child, which was also my second ICP baby. I wanted to give back go this organization after receiving a tremendous amount of information about the disease, how to advocate for myself and baby, and a supportive community of other women that went through the same thing. The community was so important to me and made coping easier since I didn't feel so alone. When I saw they were looking for board members it was a no-brainer for me to apply, it was the best way to give back that i could think of since I have a background in accounting and fundraising. I've been grateful to serve the past 1.5 years, during this time I've had my third ICP baby and once again used and appreciated the updated information that ICP Care provided and was able to find a great hospital and doctor for my pregnancy that was well educated in ICP.
I've enjoyed participating in all of our fundraisers, my favorite is our virtual silent auction and our walk/run fundraisers. Other board members are amazing to work with and I love seeing the passion behind every single individual involved
My journey with ICP started as I began experiencing symptoms of itching on my belly during my second trimester of my first pregnancy. When I complained of how uncomfortable I was, many people attributed my discomfort to stretch marks, and “normal” pregnancy bodily changes. Being that this was my first pregnancy, I assumed this was just par for the course. When the itching progressively got worse and spread to the tops of my feet, shins, and lower arms, I began advocating for myself as I knew this could not be “normal”. Upon speaking to my OB, she said there was a “rare” condition involving your liver that they could do bloodwork for to see if that would explain the itching. Although she felt doubtful, as it was fairly early on in my pregnancy, I pleaded to test for anything that would explain my debilitating symptoms. One week later, my bile acid liver test came back higher than normal, which indicated that I indeed had ICP. From that moment forward, beginning at 26 weeks, I was monitored closely with regular blood tests and sonograms to track my baby closely. I was given Urdisol to help with my itching, and thankfully my symptoms began to subside.
Once confirmed with ICP and learning the possible outcomes of the condition, I was extremely fearful, and felt alone not knowing what was ahead of me. I decided to do some independent research online to educate myself, and it was there I came across ICP Care. Upon joining the online community, I soon became in contact with many women who shared their journeys with me. They provided me with guidance to help me navigate the process, and it was through their stories that helped me make decisions to successfully know how to manage my ICP journey. I was induced at 37 weeks, and after my son was born, we spent a few extra days in the hospital for him to undergo bilirubin treatment in the pediatric nursery. For the first month of his life, we continued to monitor his levels, but it was quickly managed and I now have a very strong, healthy boy!
Itching. Itching was part of my life from 30 weeks pregnant with my second child. It all began suddenly hands, feet, back, and eventually everywhere. At first I thought, "well my body is stretching in a lot of places, so this is normal right?". They always say one pregnancy is different from another. I had called my OB Gyn by this time and told them what I was experiencing. They told me it was probably nothing and to keep my scheduled next appointment with the midwives. I showed up to my appointment and everything had been measuring fine, movement was great, my only symptom was itching. I had looked up my symptoms prior to this appointment and found www.ICPCare.org, I didn't say anything about me looking into a diagnosis. The midwife did her normal visit and in the middle walked out and said she would be right back. She came back in and told me that she had discussed with a doctor about the possibility of Cholestasis. She said to not jump to conclusions until my lab work came back. The lab work took two weeks to come back and by then my urine seemed really dark, my stools were light, and my itching had gotten worse. My lab work came back and my bile salts were 89. They switched me over from seeing the midwives to the doctors since they said I am a high risk OB. They told me that I would need to come in weekly for biophysical profiles and non-stress tests. Along with going weekly, they put me on Ursodiol. My itching was not getting better and worse at night. Since I had been diagnosed with ICP, not one doctor had said anything to me about taking the baby at 37 weeks. With research and being apart of the ICP support facebook group, I knew that this was what needed to happen. At my OB Gyn doctors office you go through seeing each doctor incase that's the one you get for delivery. I had been asking the question at each weekly appointment about induction and I was getting scared because I was getting closer and closer to 37 weeks. Finally at 35 weeks, the doctor I saw immediately said, "well I see that at 30 weeks you were diagnosed with Cholestasis, we are going to have a baby at 37 weeks!". I was so relieved to hear this! I didn't have to ask or explain my worries or bring up what I had researched again. Huge relief and I could stop being so worried all the time. Of course, I was worried and praying that my baby boy would make it to 37 weeks. We scheduled the induction at 37 weeks. Induction went easier than I thought I would and he came into the world as a perfect, healthy baby boy weighing 5 lbs 14 oz.
In knowing now what Cholestasis is and how it can get overlooked my pregnant women who avoid symptoms or doctors not thinking that it could be it because it is so rare, I can't begin to stress to pregnant women how important it is to listen to your body and tell your doctor of any strange symptoms your having. I am certain that I had a slight case of Cholestasis with my first child. The symptoms started at 37 weeks and she was born at 39 weeks. I had no clue of ICP or what it was until my second child. I am so blessed that she was born healthy and everything was fine. My husband was such a great supporter through it all. Worth Every Itch.
Review from #MyGivingStory
Intrahepatic cholestasis of pregnancy (ICP) is a potentially fatal disorder to unborn babies, and yet it's entirely treatable. Despite the fact that the 15% increased chance of stillbirth can be completely reduced to normal with proper care this deadly disorder during pregnancy is still relatively unheard of and leaves questioning mothers and families isolated, even in a world of books and the internet full of information on nearly anything else. In this desert of help there is an oasis flowing with research, support, education, one on one guidance and international group connections. This beautiful oasis is the 501(c)(3) non-profit organization ICP Care. ICP Care is dedicated to saving every unborn baby from stillbirth to this treatable disorder. Run entirely by a handful of volunteers, including myself, there is help day and night on our Facebook support group for panicking families, depressed moms, moms who have been forced to become their own advocates over night. It is a life saving non-profit, in more ways than one.
After having two ICP pregnancies and realizing how much work still needs to be done it's an honor and a gift to now be able to pay it forward volunteering on behalf of ICP Care and spreading awareness daily. I've personally experienced the amazing strength ICP Care freely gives out to all the mothers and families suffering with this little known disorder. In my first pregnancy I was suffering from the classic symptom of ICP - intense, unexplained itching - but I allowed myself to ignore it. I never told my doctor and so when my body started shutting down and my sweet little baby stopped moving we couldn't understand what was happening, but we knew he was not going to live much longer. I was emergency induced at 36 weeks for "unknown distress". My second pregnancy was shortly after and again this intense itch came back, it was stronger this time. Strong enough to be impossible to ignore. The hospital suggested antihistamines but nothing helped. In a desperate search through pregnancy books and google I finally found ICP Care and everything, absolutely everything, finally made sense. Thanks to all of the information and support from ICP Care I was able to get the life saving medication needed during the pregnancy and my second son was very safely carried to 37 weeks when I was induced again; early delivery is the second piece of proper treatment. I know ICP Care saves lives because I have seen it first hand. I have experienced the love put into every single mother suffering. I've seen the knowledge shared with every single mother scared. I am now one of the volunteers working daily to provide the same love and support to other ICP moms!
Review from #MyGivingStory