Founder / Board Chair
I look forward to helping with information and support to all those affected by ICP. I am a Mother who experienced Cholestasis of Pregnancy and blessed with two healthy children Branden & Evan. My time is dedicated to my family, work and passion to raise awareness. I founded ICP Care in an effort to continue to improve awareness among people and the medical community. The journey through ICP began with my first pregnancy in 2003 with my son Jorden. My pregnancy was wonderful until my 33 week when I began with itchy symptoms. Please read My Life-Changing Experience with Cholestasis of Pregnancy story on What to Expect.
Through the Itchy Moms Support group, I received comfort, and reassurance from those that experienced ICP and others that lost their babies to the condition. After living through the sorrow of my loss, my prayers were answered with my second pregnancy in 2004, with my son Branden. My new healthcare providers specialized in high risk pregnancies. The Maternal Fetal Medicine specialists were excellent with the best medical management, treatment and care. I will always remember the joy of having my sweet son home with our family as it is one of the best memories I hold dear in my heart. Subsequently, my blessings continued in 2006 with my surprise baby, Evan, I was diagnosed with Cholestasis of Pregnancy at 33 weeks, although I thought perhaps, the condition may skip my third pregnancy. I am blessed and truly cherish the special moments of time lived with my loves, each of my three sons. They have brought peace and joy to my life.
With all the life changing events that unfolded, I had a true yearning to help and reach others whose lives are affected with ICP. I corresponded regularly with Melanie Weltin from the Itchy Moms website and she chose to transfer that domain name to me in 2008, after years of communicating with her and knowing my passion to continue to make a difference for all those affected. The journeys in my life lead the way to support those who are searching for answers. In April 2012, I founded the nonprofit ICP Care.
ICP Care has a Medical Advisory Committee of Healthcare specialist. The information on this website was gathered from medical articles & references you can review on the Medical articles & reference page of the website. In addition to other women with Cholestasis of Pregnancy personal experiences and books. The ICP Care website is a guide for you to utilize to help you and your healthcare provider understand and learn more about the high risk pregnancy condition Intrahepatic Cholestasis of Pregnancy.
There is a definite need to assist in the awareness of ICP as well as aiding others to seek the proper medical treatment that is vital for those health care specialists caring for women with Intrahepatic Cholestasis of Pregnancy. My goals continue by networking with those affected by the condition, researchers and medical healthcare specialists throughout the world. With your help together we can all make a real difference to Fight the Itch. Save a Life.
Please contact me at firstname.lastname@example.org (Hablo español tambien escríbame)
Senior Manager / Vice Chair
As a mother of three ICP babies, my hope is to help women like me to get the treatment they need to protect the lives of their unborn babies. I have a degree in biology from the University of Wisconsin, and I am happy to be able to use my science degree and background, as well as my sister, who is now a doctor, to help women learn about this disease and seek the proper medical attention.
My ICP story began with my first pregnancy, and like so many women with ICP, my first ICP pregnancy went undiagnosed. In retrospect, I can see many of the warning signs – I remember asking a friend if she, too, had been really itchy when she was pregnant. I had terrible right upper quadrant pain throughout the pregnancy; pain so debilitating that I found it nearly impossible to drive or even sit in a car. Even sitting in a chair could be excruciating. I had terrible bruising all over my legs, a sign of vitamin K deficiency which is another danger associated with ICP, and when Sydney was born she went into distress. I am thankful every day for my doctor who intervened promptly, allowing her to be born safely. After delivery, I also hemorrhaged, yet another complication of this disease.
In my second pregnancy my sister was in medical school and I asked her about this intense itching that I had that was keeping me from sleeping and causing me to intentionally scratch the skin off my feet just to get a little reprieve. She made the diagnosis of ICP and sent me to my doctor where we ran liver function and bile acids. Liver functions came back elevated within hours, but I was hospitalized for preterm labor the next day before bile acid results were received. I was treated with Ursodeoxycholic acid and delivered Alec at 36 weeks. My third pregnancy saw worsening ICP as my bile acids and liver functions were not able to be controlled with medication. Lucas was born at 35 weeks via urgent Cesarean section as he was breech. He suffered from failure to establish breathing at birth and needed to be transferred to another hospital for more respiratory support. He did well, and three days later, when I was discharged, I was able to go pick him up and bring him home, too.
After pregnancy, I learned about the importance of follow-up care for all women with ICP. Approximately six months after Lucas was born, I was diagnosed with Familial Intrahepatic Cholestasis (FIC). This came after follow-up testing for worsening ICP-like symptoms, and many appointments with gastrointestinal specialists and finally hepatologists. FIC is a genetic liver disease that caused me to develop ICP secondarily when pregnant. It also explained why my ICP was not able to be controlled by normal medications, as FIC does not respond well to Ursodeoxycholic Acid. Looking back at my medical records, I can see that I had been to the doctor many times before this for FIC symptoms – unexplained itching and intense right upper quadrant pain – but we were looking for answers in the wrong places.
Contact me at email@example.com
Manager (Spanish/Postnatal)/ Board Member
I had my first experience with ICP at the age of 22 when I was about 18 weeks pregnant. I told my husband and my midwife about this itching on the palm of my hands and sole of my feet, it felt like a burning itchy feeling. After a few weeks, the itching became worse and was now spreading throughout my whole body, I knew something was definitely off. My husband and I went in for a check up and the midwife told me about Intrahepatic Cholestasis of Pregnancy. She didn’t know much about it so I decided to switch from the midwife to an OB and met Dr. Kerr. She tested my Bile Acids and LFT levels, they were high to say the least. I was put on Urso and I was being closely monitored by her. The itching was getting unbearable. I was unable to sleep, eat or function. She gave me the steroid shots to help with the development of my baby’s lungs. At 32 weeks, I went in for an ultrasound, my baby wasn’t moving much and the sonographer sent me up for a non-stress-test. After being hooked to the NST for a little while my baby’s heart rate and oxygen levels came crashing down. It was madness all around and I was taken in for an emergency C-section. Our beautiful daughter was born 4.15 lbs, healthy and breathing on her own. She was in the NICU for 2 weeks because of jaundice but was sent home. Thanks to Dr. Kerr’s quick actions and knowledgeable approach.
Our second daughter came 2 years later. With this one, I knew what I was up against. The itching came around 22 wks. The itching was bad as it was the first time around. My BA and LFT levels were high again despite being on Urso and were not coming down. Dr. Kerr had me do blood work and NST twice a week, also ultrasounds twice a week and constant monitoring. I was given the betamethasone, at 32 weeks. With my levels being so high, she decided to do the amniocentesis to confirm lung maturity. Dr. Kerr didn’t want to take any changes and our second beautiful daughter was born at 34 weeks at 6.4 lbs. She spent a few days in the NICU because she had passed meconium at birth but was healthy and with very strong lungs!
My husband and I decided to take a leap of faith 9 years later. I got pregnant right away and my itching started around 25 weeks. I was put on Urso, ultrasounds, NST and blood work. The itching was bad and terrible as it was with my 2 prior pregnancies. My BA levels of 59 were confirmed at 30 weeks spite of being on Urso and were not coming down. Given the increase of my BA and LFT levels, my OB took into account that both my daughters hadn’t gone past 34 weeks and based on my BA and LFT levels, she gave me the betamethasone shots and decided to schedule C-section at 35 weeks. Our son JH IV was born 6.8lbs! And as healthy as can be.
Given the difference in age between our daughters and JH IV, we decided to have another little one, and little partner for JH IV to get in trouble with. We got pregnant right away again. With this pregnancy though, all was well up until 24 weeks. I started with the itching, a very intense itching, not only on my hands and feet but throughout my whole body. By the time I was diagnosed much to my insistence, I had been sent to the MFM specialist who confirmed ICP at 30 weeks. More of my story to come soon…
Even though my journey with ICP has not been the easiest, it has given the greatest joys and the biggest heartache a parent should ever have to endure. I am committed to help mothers like me, who have to deal with this terrible condition.
Contact me at firstname.lastname@example.org
Social Media & Content Coordinator
I would like to begin by expressing my gratitude to Donna and the team of volunteers that make this organization possible. The information I received from icpcare.org was instrumental in receiving my diagnosis and I am forever grateful.
The road to holding my son in my arms was one paved with exhaustion, loss, and anxiety, but ultimately joy. I underwent several fertility treatments, the loss of my first pregnancy, and finally IVF to become pregnant with my son. Because of other underlying conditions, my pregnancy was slightly high risk, but had a very positive outlook – until I was 35 weeks pregnant. When my itching hadn’t subsided after two days, I looked up my symptoms online. I knew in my gut I had ICP and contacted my doctor. My blood work came back a couple of days later and confirmed my belief. My husband and I went from hope, joyful anticipation, and relative calm, to fear, worry, and panic. Because I was not diagnosed until 35 weeks, I hadn’t received Ursodiol, NSTs, or BPPs typically administered during an ICP pregnancy. My doctor informed me we needed to get this baby out safely, and we needed to do it immediately. I was induced three days later.
On September 20, 2016, at 36 weeks gestation our son was born. 7 pounds, 10 ounces, 21 inches long. Can you believe the size of him?!
Thank you for taking the time to read my story. I am in awe at the strength of this community and I’m so glad to contribute.
Contact me at email@example.com
Behavioral Health Specialist / Facebook Moderator
I was misdiagnosed with Hyperemesis Gravidarum early on in my second pregnancy. I had lost 60 lbs. and felt super ill. I then started itching and my mom told me she had had ICP in the 70s and 80s She received no treatment then and experienced a still birth at 38 weeks. She never even knew ICP caused it, though it appears it had as her placenta was very aged. I had to fight to get put on Urso and to get Bile acid testing done. I was diagnosed with a 111 bile acid level. My doctors didn’t want to up my dose of Urso, do testing twice a week or induce early. I knew I needed these things so I went to labor and delivery and demanded I be referred to a different MFM. At 35 weeks and 6 days I saw a new MFM. She agreed and ordered a delivery by 37 weeks an increased dosage of Urso and more testing twice a week. I had finally been heard. Sylvia was delivered at 37 weeks and the doctor that did the C-section showed me my placenta. It was calcified and ruptured from the cholestasis. Her exact words were, “Seeing this I am so glad you fought for early delivery. Very scary!” I hope all of you moms find the courage to advocate for your babies. I am very excited to be a part of ICP Care. This group gave me the information I needed to advocate for my baby. I hope to help other mothers advocate for their babies and help raise awareness for ICP and its recommended treatment. I am passionate about the work ICP Care does and honored to be a part of it.
I am a mom to three beautiful ICP babies. Aryanna born in March 2012 at 38 weeks and 3 days, Avery born in December 2016 at 37 weeks and 1 day and Arya born in May 2018 at 37 weeks and 2 days.
During my first pregnancy with Aryanna I started itching around 28 weeks and thought it was just another weird pregnancy thing, as I had recently discovered, there is so much that no one tells you! After a few weeks I brought it up in a mommy group on Facebook, as the itching had gotten very intense on the plams of my hands and soles of my feet and I couldn’t tie it back to a change in soaps, a rash or anything else that made sense. No one else had the same experience so I wrote it off and figured it would go away on its own. But a friend from the group reached out to me and had Googled my symptoms. She found a page on the American Pregnancy Association website about Cholestasis of Pregnancy. I had every single one of the symptoms besides upper right quadrant pain.
At my 32 week appointment I saw a Nurse Practitioner. I showed her what I had found online and asked to be tested as I had almost all of the symptoms. She refused and called me a hypochondriac. I became very upset and a couple of the Nurses stepped in to help, they took the liberty of alerting the on call doctor who made the Nurse Practitioner test me. My bile acids came back at 12 and I was diagnosed. I started Ursidol right away and induction was planned for 37 weeks. While I was relieved to be diagnosed and treated I mourned the loss of the all natural water birth I had planned.
I was set up to have BPPs & NSTs twice per week to monitor the baby. She always passed her tests and she looked great on her ultrasounds. I was very lucky that Ursidol relieved most of my itching. My bile acids were never retested. At my 37 week appointment I was informed that the hospital policy had just been changed and I would not be induced until 38 weeks. Then at my monitoring appointment later that week at 37+6, my blood pressure spiked. I was sent to Labor & Delivery and diagnosed with pre-eclampsia. It was decided between the two diagnoses I would be induced that day. After a 4 day induction an emergency c-section under general anesthesia was needed. It was so different from what I had planned, but in the end we both made it out healthy.
With my second pregnancy I decided I needed to know more about ICP, as I knew the recurrence rate was high. I found this website and joined the Facebook group. I read everything I could find and soon learned how ignorant I was during my first pregnancy. As I did not find out I was pregnant until close to the end of my first trimester, and had a high risk history, plus my desire for a VBAC, I had a very hard time finding a doctor. After 30 rejections, I finally found the right woman for the job. I started itching at 18 weeks and I was in denial. At 20 weeks even though the itch was so mild compared to my first pregnancy I asked to be tested and my bile acids came back at 9. My doctor was quick to acknowledged that I was 1 point off from diagnosis and offered to diagnose based on symptoms and my history. Thanks to the Itchy Mom’s group I knew this wasn’t the best idea. I declined the offer and we agreed I would retest. After one more test I was diagnosed at 29 weeks with a bile acid of 11. I was scheduled for a BPP once a month, NSTs weekly starting at 32 weeks, and induction at 37 weeks. We retested my bile acids again to see if the Ursidol was keeping my numbers down and they had risen to 15. By 35 weeks my bile acids had risen to 23 and my placenta had grade 3 calcification. I was concerned about my levels rising and my placenta so I asked for monitoring twice a week, which was approved. I was schedule to be induced at 37+0. Avery was born the next day via induced VBAC. Throughout this pregnancy my itching stayed very mild, nothing like my first where I was scratching myself to the point of drawing blood. Though due to knowing a lot more about the condition, and the risks, I found this pregnancy was much harder on me mentally.
We had planned to start trying for Baby #3 when Avery was 18 months old, but SURPRISE! I got pregnant when she was only 8 months old. Besides the shock of the pregnancy I was worried about having two back to back ICP pregnancies, especially as my second was harder than my first. At 9 weeks my doctor and I decided to do a baseline test, we were both shocked that despite being asymptomatic, my bile acids were already 15. She had never seen or heard of a first trimester case and was weary of starting Ursodiol and giving me an official diagnosis. She deferred to my MFM who is thankfully very knowledgeable about ICP. Once I had my diagnosis and medication I was very nervous about my bile acids being so high (compared to my previous pregnancies), so early on. When I learned of the increased risks that go along with early diagnosis, it all compounded.
At 14 weeks I ended up in the ER for constant vomiting and upper right quadrant pain. My MFM ordered a liver and gallbladder ultrasound. It was discovered my gallbladder was full of stones and needed to be removed. Due to the risks of removal it was decided I would off until after the pregnancy, if possible.
At 27 weeks while my husband was out of town for work I ended up in L&D for severe stabbing pains in my abdomen. They ran several tests all of which came back clear. They were talking about discharging me when I suddenly started contracting. The contractions got as close as 2 minutes apart and would not let up on their own, so I was given Terbutaline and admitted. Finally by morning the contractions became irregular enough for me to be discharged. My cervix remained closed, but I was 25% effaced.
In the following weeks I was in and out of L&D for more preterm labor scares, as well as blood pressure issues. Thankfully this time Ursodiol kept my levels nice and low and I received the same monitoring I had in my second pregnancy.
Despite this wild rollercoaster of a pregnancy I made it to my induction at 37+0. After another long induction Arya came into the world two days later; I achieved my second VBAC. I ended up having my gallbladder removed at 8 weeks postpartum.
I feel very lucky and thankful everyday to have three healthy children. I am so thankful for ICP Care and the Itchy Mom’s Facebook page and I feel honored to be able to share my own experience coupled with current research to assist other mothers dealing with this stressful condition. Spreading awareness for ICP has become a passion of mine and I look forward to helping as many women as I can.
I am a mother to my two “itchy” babies. My first pregnancy progressed normally until about 36 weeks. My son was growing as he should; I tested negative for all those typical pregnancy tests. I felt great! However, at 36 weeks, I started getting really itchy. I thought I had an allergic reaction to something, but I didn’t have a rash. I was puzzled. I mentioned it at my 36-week appointment. My family practice doctor asked if I had any pain near my gallbladder (right upper quadrant), but I had not. He told me that he’d like to run some tests to be on the safe side. I got called the next day that my liver enzymes were high and to come in to labor and delivery as soon as possible. When I arrived, they ran more tests to rule out anything more serious, but they were pretty sure that I had ICP. I had never heard of this condition and was pretty freaked out. They had mentioned that I would need to be induced by 37 weeks if my bile acids came back elevated. I was living in Japan at the time due to my husband being in the military. Realizing I could have my first baby in less than a week put me in to a full-on panic! I was enjoying my pregnancy and was hoping to go past my due date. I think some of that was also due to not feeling ready to be a mother. Anyway, my bile acids came back elevated a few days later. I was overwhelmed with all of this new information. I was skeptical of taking any medication while pregnant and was worried about the safety of taking Urso. I spoke honestly about my concerns with my new OB, so she printed out some studies since I wasn’t convinced by her answers. I took the information home and picked up my prescription to try to appear to be a good patient. It wasn’t until I started reading the literature she gave me that my mind started to change. I wasn’t fully convinced that I needed Urso, but I also thought if this could mitigate some of the risks of ICP then what was holding me back? I decided to start taking the medication. I asked if I could be induced at 37+2 since my mom had changed her flight to be there for me. My doctors were okay with that since it was still within the recommended time frame. My mom arrived the night before my induction was to start. I was really nervous about my induction; I was really afraid that I was going to end up with a C-section. And I was really sad that the unmedicated birth that I had so wanted wasn’t going to happen. However, I came to accept that I would do whatever I needed to so that my son would be born healthy. I just wanted him to be here in my arms. My medical team was fantastic. They were very supportive of my wishes; and were also a huge encouragement to me. They did whatever they could to help me have some control over this worrisome and scary situation. After about 20 hours of labor, my son was born wonderfully healthy. It was a huge relief to meet him for the first time. I was overcome with so much love and gratitude that he was here with me.
After my first pregnancy, I tried to find out as much as I could about ICP. A college friend, who also had ICP, invited me to the Facebook group for itchy moms where I learned so much more about ICP. It’s there that I learned that the recurrence rate was so high. Since we knew we wanted more children, I studied this site and read study after study so that I could be as prepared as possible for another pregnancy. My second ICP pregnancy was pretty different for me. At my first appointment, they tested my bile acids to set up a baseline which came back normal. At that point, I wasn’t itchy. However, I started itching shortly after that. It was pretty mild so that was new. And it really messed with my head because I kept wondering if I was paranoid that I was going to get it again and that’s why I was itchy. Or if I did really have it, and that was what was happening. It was really hard on me emotionally, especially since I was also taking care of my one and a half year-old while preparing to move back to the US. We moved back when I was about 28 weeks pregnant. At about 32 weeks, I had my first appointment with my new OB. Coincidentally, he was the one who had started my induction with my son back in Japan. It was a huge relief to see a familiar face in a new setting. It was also a relief for me since I knew that he had some prior experience treating ICP. Right before my 35-week appointment, I started to itch more. Up until that point all of my tests had come back normal. My doctor ordered more tests, and he called me later that day that my liver function test came back elevated. So, he went ahead and diagnosed me with ICP again based on my symptoms, my prior history, and my abnormal liver results. He prescribed Urso, set up my induction date, and set up an NST. When I met with the MFM, my bile acid results had come back elevated as well. I was so grateful that I had received such great care from doctors, nurses, midwives, and corpsmen. I was especially grateful that my doctor had been so proactive with testing and treatment. I was less scared for my induction the second time around. My induction went pretty smoothly, and my daughter was born in about nine hours. It was a much easier birth! And she was born beautifully healthy, too. I am so grateful to have had the support and resources from ICP care. And I want to do all I can to help give back and support other itchy moms.
In my first pregnancy, I was an otherwise healthy 28-year-old brain cancer survivor with no risks for complications. My sister had two very normal pregnancies and I expected a typical pregnancy with the usual outcome, a healthy, happy baby. Up until my third trimester, my pregnancy was normal. Yes, I puked regularly until almost 19 weeks, but that was normal. All those aches and weird pain? They were also to be expected. So when I began itching, I shrugged it off and labeled it as “normal” along with my pregnancy. I had not yet discovered the ICP Care website and the little information I had read all said that Caucasian ladies like myself really were not likely to get cholestasis of pregnancy anyhow. Plus, itching should be localized to my hands and feet, not affecting my legs and everywhere else.
By thirty-seven weeks, I was miserable, not sleeping, and feeling guilty for wanting my baby out. I finally complained to my midwives and they ran bile acid and liver function tests. Additionally, they noted that my blood pressure was high, but below the threshold for pre-eclampsia.
At thirty-seven weeks plus five days, I went into labor on my own on New Years day 2015. Twelve hours into labor, my midwives popped my water and it was stained with meconium. I transferred to a hospital. I can remember itching so badly and complaining that a nurse’s scrubs had even brushed against my skin. My labs came back as I labored with elevated bile acids; my blood pressure spiked; my temperature jumped to 103. Finally, my little one was born and whisked away to the NICU for the evening. I was immensely relieved. Later, I learned that ladies with this high-risk pregnancy condition have a higher occurrence of preeclampsia. Additionally, meconium in the amniotic fluid was also a risk associated with ICP.
It was more than a year later that I began researching Intrahepatic Cholestasis of Pregnancy. My husband and I wanted more children and I needed to know more about the crazy itching disease that had caused so much misery. I stumbled around random research articles but finally found the ICP Care page where I learned more about not only ICP but also the risks it has for my baby. I thanked God that my son had come on his own and was healthy. I also wished I had the information and research better to advocate for my little one and myself. ICP has a high re-occurrence rate and I was grateful to find the information I may need for my next pregnancy. Now, I get to give back to ICP Care by volunteering to help other ladies walk through similar experiences and encourage them to advocate for their little ones. ICP Care provides information so mothers like me do not have to be in the dark about abnormal itching, its causes, and its potential great risks to their babies.
Canada Facebook Moderator
I am a mama of two healthy itchy babies, Mason and Liam, and two early angels. I am so thankful for the ICP organization and support groups for the continued support and information provided to me so I was able to navigate through my diagnosis and advocate for myself and my babies.
Like many other mamas my first pregnancy went undiagnosed. Looking back my husband remembered me being in pain and itching during my first sons pregnancy and this was something I didn’t even realize until I looked back on it during my next pregnancy. But I thankfully delivery a healthy 6lb 12oz 20.5 inch little boy at 39 weeks. This was due to an aged placenta, no amniotic fluid and fetal distress/ low movement. I followed my mama intuition when I felt like something was wrong at my 39th week and I’m so thankful I did.
When I became pregnant and diagnosed in our second pregnancy we found out I likely had ICP with our first. Our OB looked back at my delivery and pregnancy and said he believed I went undiagnosed.
My second itchy pregnancy I started having symptoms at 15 weeks. At this point I was still unaware of Cholestasis of pregnancy. I had heard of it briefly in my Doula profession but was still very unaware of it. When I contacted my midwife at 18 weeks because I was experiencing severe itching on my chins for weeks which didn’t seem right to me, she sent me to an OB right away. She didn’t believe it could be Cholestasis because I was only 18 weeks but she wanted to be safe and sent me to an OB just in case. After ruling out other conditions first I was then tested and diagnosed with ICP at 20 weeks. My OB and midwife both told me that in their 35+ years in practicing they had never seen a mother diagnosed as early as I was. To some extent they didn’t know what to do with me at first. But I was very lucky that with their openness to listen we combined what they knew and what I knew, and I received wonderful and proper care for me and my baby. My OB was very proactive with medication, monitoring and early delivery and with that correct treatment and care I delivered our second healthy little itchy boy at 36 weeks 6days. 7lb 3oz and 21inches. (He would have been a big boy at 40w!)
With all the ups and downs, the emotional stress, a crazy list of symptoms and the scary but supported ride I went through, I am now on the other side and every itch was worth it.
By bringing in my background as a Birth and Postpartum Doula, a teacher and my experience and knowledge with ICP, I am proud to be a part of the ICP organization supporting the other mamas and families who are also along for this journey. I am dedicated to providing the proper information and non-bias support for the itchy mama community.
I have 4 beautiful children, only with my 4th child did I have ICP.
After having an extremely stressful twin pregnancy (#2 and #3 not ICP), I begged my husband for another child for many reasons, one of which I craved for a normal singleton pregnancy. This was not going to be the case.
At around 28 weeks I found out my mum had terminal cancer, she was given 2 months to live. About 2 weeks after that I started itching on my hands and feet, my cousin had PUPPPS so I rang her and asked how she felt, I quickly realised this was not PUPPPS. A quick google and I knew it was (ICP) Cholestasis of Pregnancy, itching, pale stools and Upper right quadrant pain.
I rang my midwife, she came out to my home that morning took bloods and that afternoon she rang me and confirmed what we both thought was ICP (side note: in Australia, the test only takes hours to run in capital cities). She escalated my care to Maternal Fetal Medicine to which I was very familiar and knew many of my specialists already. I was prescribed Urso, the few days it took to become effective was very difficult, once the medication began working things improved. I had blood tests and CTG’s 3 times a week, I always knew when my levels had gone up as itching increased. By a few days after 37 weeks and a long wait for results and a specialist, my favourite specialist who delivered my twins came in to see me, she said it’s time to get this baby out, levels were 39.
So some mad running around as my husband and 3 children were with me, hubby made it back to begin induction which was challenging due to my previous c section. I had a Foley catheter which failed, then my water broken, after a very long 18 hours he was born (after the threat of a doctor to do a c section) he was a huge 4550 grams (10 pound 5oz), my placenta looked calcified and he had swallowed some meconium, he spent a few hours in special care, since that date he never looked back, and my mum did meet James we had 3 weeks with her before she passed. As strange as it is I thank ICP for needing early delivery without that my mum may have missed out on meeting her final grandchild.
I also admin 3 other Facebook groups, 2 to do with the complicated and rare twin pregnancy I had and 1 to do with Caravanning around Australia. I feel it is my duty to help and support others in their time of need, to provide them with evidence based care plans and support them to making a well informed decision about their care plan. Thank you for having me as an ICP Care team volunteer member.
Australia Facebook Moderator
I am a lucky mum of 2 ICP babies and inherited it from my mother.
My first pregnancy was a dream, I was never sick and continued to live my normal life UNTIL I was 35 weeks when I complained to my mum that I was so itchy and ripping my skin apart. She told me to mention it in my next midwife appointment as she had the SAME THING when she was pregnant and they told her the baby was jaundice unfortunately my mum has had nearly every risk and symptom of ICP with all her kids/pregnancies .
So upon mentioning it to my midwife she went into full drive sending me for urgent testing and explained it could be cholestasis (ICP) 2 days later I got a call at work and was told to get straight to the hospital and was hooked up to all different machines !!!
In my mind I thought everyone was over reacting and needed to calm down I mean it was JUST AN ITCH but after some research we found how serious this actually was and it was hereditary. After being put on Urso and lots of monitoring I gave birth to my beautiful boy at 38.5 weeks after a touch and go birth with haemorrhaging.
My Second pregnancy however was not as much of a breeze! This time I was diagnosed at 24 weeks so it was a long process to her arrival at 37 weeks the itching seemed more intense and I was more lethargic, birth yet again led to haemorrhaging.
My husband and I have decided no more children due to this which is sad but I’m ok with it.
My goal is to keep ICP awareness going for my children, Grandchildren and great grandchildren’s sake. I want them to be prepared, not scared and informed.
Lyndsey Scully Quist
As a mother of one non-ICP baby, Cooper and one ICP baby, Sienna, I know how quickly everything can change in pregnancy. Thirty weeks into my second pregnancy I started experiencing intense itching at night. On the third night of sleeplessness, I vaguely remembered a blog post from months prior that mentioned how you should never ignore itching in pregnancy. Early that Sunday morning I called my midwives in labor and delivery and was shocked when they told me to come in immediately for blood work and monitoring.
I was incredibly fortunate that within my small midwife practice, one of the midwives had personally experienced cholestasis of pregnancy with both of her pregnancies. The entire group was incredibly supportive and knowledgeable about the condition and immediately treated me as an ICP patient while waiting for a positive blood test. They warned me that waiting for the diagnosis could be a long and frustrating process but assured me that as long as my symptoms continued we would keep testing my bile acid level. Approximately three weeks later I was officially diagnosed with Intrahepatic Cholestasis of Pregnancy. I was 33 weeks pregnant and my midwife team scheduled twice weekly NSTs, weekly appointments, amniotic fluid checks and started me on Ursodiol. We continued to monitor my bile acid levels which slowly creeped up through the final month of my pregnancy, and scheduled induction for 37 weeks. On July 11 my daughter Sienna was born after a 23 hour induction. Roughly two hours after her birth I started to vomit and lose consciousness. My labor and delivery nurse realized that I was experiencing severe hemorrhaging, a common complication of ICP. My midwives were called back into the room and for the next hour they worked tirelessly removing blood clots to save my life.
Looking back I realize that my experience with ICP was only a seven week ordeal, but if you have experienced it, you know how truly difficult those final weeks of pregnancy can become. At a time when you should feel hopeful, relaxed and focused on motherhood, ICP turns pregnancy into an incredibly physically and emotionally challenging and stressful time. I am so thankful that the ICP Care community was there for me when I needed it most. I spent hours reading over the medical information provided by the website and received such wonderful support from the Facebook community. Hearing all of the stories of healthy ICP babies born each day, kept me sane during such a difficult time. I am excited to use my professional experience in fundraising to help the ICP Care community share their message of ICP awareness to help save the lives of babies everywhere.
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My first experience with ICP was in 2013 with my second baby. I began noticing an itch right around 35 weeks, but wrote it off as allergies or dry skin. I had never heard of ICP before and didn’t really think anything of it. As the following couple of weeks progressed, the itch became more and more unbearable. It got strong enough that I finally knew something wasn’t right. I could find no relief! I called my Doctor to ask if anything could be done to help my itching, and he immediately had me come in for testing. I was 36 weeks + 5 days. That day was the first I had ever heard of ICP. Naturally I was extremely nervous and read everything I could on the subject. I was referred by another mom on a baby forum to the ICP Care Facebook support group. I joined and found such a great relief! It was comforting to not only hear so many positive stories of babies delivered safely, but also to have other women who could understand what I was feeling! I got my lab results back at 37 weeks + 2 days, and was induced the following day at 37 weeks +3 days. My sweet girl arrived healthy and my itching went away almost completely right away.
Nearly 2 years later I was 35 weeks pregnant with my third baby, and began again to experience some itching. It wasn’t severe yet but I recognized it and knew what was coming. My doctor was a different one than with my first two pregnancies, and hesitated to draw blood when my symptoms first began. A week and a half later I was miserable itching, and told my doctor that I knew it was ICP again. He met with me and since it was already time to induce me, that he was willing to give a clinical diagnosis based off symptoms and my history with ICP. I was induced the following morning and my labs came back a week later, with bile acid levels of 43. I became pregnant a little over a year later with my 4th baby. This pregnancy was different in that I had bouts of Itching throughout my pregnancy. My tests continued to stay in the normal range until I was 36 weeks. I was then diagnosed, given medication, and induced the following week at 37 weeks.
I’m so thankful to have had support from the ICP Care FB group, and the information I was able to learn from the website! I hope to pay it forward and spread the awareness and provide support for other women who are experiencing ICP. Together we can help save lives!
I am a mom of three, two of which were ICP pregnancies. Cooper was born in September of 2009 was my non-ICP baby born at 39 weeks and 4 days, Kinleigh was born in August of 2012, my first ICP baby born at 36 weeks & 1 day, and Harper born September of 2016 was my second ICP baby born at 36 weeks & 4 days.
I was working 12 hr overnight shifts at a nursing facility and spent a lot of time on my feet which caused me to develop swelling in my feet/legs. My doctor advised me to start wearing compression socks to help with the swelling. It was shortly after that I started to develop this itch on my ankles. I initially chalked it up to the socks so I switched brands. The itch only got worse so I started using a hydrocortisone lotion. After a few days the itch had spread to my feet, ankles, hands & wrists. When the hydrocortisone didn’t work I tried Benadryl thinking I was having some kind of histamine reaction. The itch had gotten so bad I was clawing myself until I bleed and was not getting any sleep. After trying thick lotion, hydrocortisone, & Benadryl with no relief I knew something wasn’t right. Being a nurse I had easy access to medical information and started researching causes for severe itching while pregnant and came across Intrahepatic Cholestasis of Pregnancy. I was around 35 weeks at this time. I was working my normally schedule weekend shift and developed high blood pressure and my pulse had spiked. I called my on-call provider and they advised me to come to L&D right away. When I got there I told the triage nurse what I had been experiencing and that I thought I had ICP. They drew routine blood work and my liver function panel came back extremely elevated. The doctor came in to talk to me and explained to me that since my liver enzymes were so high he wanted to test my bile acids. He said the results would take about 7 days. My results came back while at my 36 week appointment. They were a 28. We did an NST and I was told to come back that evening to start my induction. My daughter spent the next 7 days in NICU due to respiratory distress.
With my 3rd pregnancy I had a baseline bile acid test done at 8 weeks and it came back at 7. I wasn’t itching and had no other symptoms so we didn’t continue testing. It wasn’t until 32 weeks when the dreadful itch returned. We retested bile acids and the came back at 11. My doctor started me on the medication to treat ICP Urso but since he wasn’t familiar with ICP I had a consult with an MFM. We discussed a treatment plan and induction date. I would have weekly NST’s and BPP’s. I received steroid injections and was induced at 36+3. My daughter had no respiratory issues but after discharge we did need some biliblanket therapy for jaundice.
My mission is to help educate woman on Intrahepatic Cholestasis of Pregnancy. ICP has had a great impact on my family’s lives. We never knew that ICP even existed until I was diagnosed with my second child. I have a degree in Electrical Engineering and want to use my science-based background to give clear concise factual evidence on the risks of ICP, the best form of diagnosis and treatment and to just support ICP patients thru their journey.
I was finally diagnosed with ICP at 30 weeks with my second son but it wasn’t thanks to the MFM I was seeing due to Placenta Previa. Let me start from the beginning with this pregnancy. I was finally pregnant after having suffered a miscarriage. We finally were going to have a baby, our rainbow baby! I was already paranoid thinking something was going to happen. I had terrible morning sickness but that was normal. When we went in for our second trimester ultrasound at the MFM at around 20 weeks they told me I had placenta previa. My husband and I started to panic but it resolved itself by 28 weeks. At this point, I was extremely itchy on my belly to the point of scarring and making myself bleed and some light itching on my hands. I told the MFM and he said to just take Benadryl. Three days later my OB saw the marks on my belly and asked me about itching. She immediately ordered a Bile Acids blood test. Labs came back and I was diagnosed with ICP and got on the medicine URSO. My OB sent me to the MFM again since I had ICP. The MFM didn’t take it seriously and just said there would be early delivery and induction and nothing else. I felt uncomfortable with his treatment plan so my OB took over and lectured the MFM on how to properly treat ICP. By 30 weeks, I started to have premature contractions and was put on bed rest. By 32 weeks, I was itching everywhere especially my scalp which was the worst. By 33 weeks, baby failed an NST & BPP and that was the first of many hospital visits. I had several episodes of reduced fetal movement and failed NSTS and BPPs. At 36 weeks & 4 days I started contracting every 6 mins. They eventually stopped. Finally, at 37 weeks, we met our itchy rainbow baby via C-Section.
The most I can say is to always advocate for yourself and your baby. If you feel uncomfortable with the treatment you’re receiving, speak up. They are there for you and the safety of your unborn baby.
I have learned so much about ICP during pregnancy and from all the information on icpcare.org that I want to pass that knowledge on to someone who could be in the position I was in.
I am a Mom of four amazing boys and currently pregnant with baby #5 due in November 2018. I had three completely normal pregnancies with my first three boys arriving at 38.5, 39, and 40 weeks respectively. Unfortunately, my fourth pregnancy was anything but normal.
At my 20-week ultrasound doctors found an abnormality with one of my son’s lungs. It was a mass, called a CPAM, taking up the space where the lower half of his left lung should have been. This meant my care would be taken over by MFMs instead of the midwives I had been seeing. I had ultrasounds twice a week to keep an eye on the mass and my son, and at one point we thought Noah may need fetal surgery to avoid fetal heart failure. Thankfully we were able to avoid that, but it still wasn’t an easy pregnancy. We had a plan to induce me at 39 weeks in a completely different state with doctors who specialized in my son’s condition and would be able to perform surgery at birth if needed (another thing we were lucky to avoid until he was six weeks old).
That plan changed when I began to itch on my feet around 30 weeks. I didn’t think much of it, but had made a post on Facebook about it. That’s when a friend urged me to look into ICP. I went and looked it up, and despite thinking “there can’t be more happening during this pregnancy” I called and spoke with one of the MFM nurses. She immediately said that she was going to talk to the on-call doctor, but they would likely be putting orders in for blood work to test my liver function as well as bile acids. I was lucky to be with knowledgeable doctors who didn’t just brush off my symptoms. After 6.5 weeks of testing, my bile acids finally became elevated enough for a diagnosis at 36+5 weeks. I was given a prescription for Urso and we planned induction for 37+2. Noah needed a week in the NICU for breathing problems and jaundice, but we knew that was a likely scenario for him.
It was during those 6.5 weeks of testing that I needed a distraction from my son’s lung mass and threw myself into researching everything I could about ICP. I found the ICP Care website and the Itchy Moms Facebook group and they were an amazing resource for me during that time. When not, all providers are knowledgeable about this disorder it can be difficult to know how or what to advocate for. I am so happy that I have a chance to offer guidance and support to other itchy mamas during a time that can be stressful and confusing.
First, I want to say how grateful I am for the ICP Care 501(c)(3) nonprofit organization. The information I learned during my own pregnancy helped guide my conversations with my providers and ultimately led to a healthy 37-week delivery of my baby girl, Adelyn.
I was diagnosed with Intrahepatic Cholestasis of Pregnancy (ICP) at 23 weeks gestation. I was admitted to the hospital for an unrelated medical issue and my blood work revealed elevated liver enzymes. It was during my hospitalization I started having intense, uncomfortable itching unlike anything I had ever experienced before. I am a nurse and I remembered learning about itching hands and feet in pregnancy but couldn’t remember much more than that. A quick internet search led me to find information about ICP. I joined the ICP Care Facebook support group that evening and from there had a conversation with my doctor the next morning. I was diagnosed with my first lab draw which initiated the process to have my pregnancy monitored more closely.
I am grateful to have found the information I did through the ICP Care website and Facebook support group – it helped me to ask appropriate questions and understand what exactly was needed for my care. I am happy to be joining this team of wonderful volunteers – I hope to be able to help guide other itchy moms to accurate information so that they too may have successful, healthy deliveries.
Postnatal Facebook Moderator
I am a single mother of one ICP baby. Lyliac May Walker. She was born at 36 weeks weighing 4 lbs 6 oz. Initially not knowing about ICP caused a lot of fear in me. It was a very hard road to conceive given a pre-existing heart condition and blood pressure issues. I recall the nervousness and utter fear I felt when finding out I had this condition. Remembering those sleepless nights I stayed awake just to ensure I could feel her kicking; drives me to want to educate as many women as possible.
Now having gone through this experience I tell everyone I know about Intrahepatic Cholestasis of Pregnancy. Many ask how old my daughter is and mention how tiny she is; which sparks a dialogue. No, I may not know that person. In theory, that person could have a sister, daughter, mother or friend who is experiencing itchiness. And like me just passed it off as just my body stretching and adjusting to make room for little one. Or perhaps it simply being just an allergic reaction to ants. Fortunately, my doctor reached out to various MFM specialist to get her adequately acquainted with the accurate treatment for Cholestasis pregnancies.
The ICP Care 501c3 nonprofit organization has been a big help in aiding women with questions, concerns, and ultimately advice on advocating for themselves. I am a strong believer of instilling strength, knowledge, and advocacy skills in women. Being a survivor of domestic violence knowing your worth and speaking up when something is not right go hand and hand. My goal is to be a support, advocate, and continue to aid women in various stages of their journey with ICP. Thank you for reading about my ICP journey.
Postnatal Facebook Moderator
I am 32 years old, born and raised in Mexico, currently living in the USA. I am a first-time mom of a precious baby boy. Since the beginning of my pregnancy I had a couple scary moments. I was diagnosed with a subchorionic hematoma that luckily dissolved; but it could have ended in miscarriage. When I was around 20 weeks pregnant in December 2016, I started feeling itchy almost all over my body. I was lucky to have an OBGYN who knew about Intrahepatic Cholestasis of Pregnancy (ICP)! I got my blood work done, and I was diagnosed a week after. She decided to have my blood tested even though I was not itching on my palms nor soles. I was also seen by a Maternal Fetal Medicine specialist. She recommended my OBGYN for me to get Non-Stress Tests twice a week after week 32.
This journey was not easy at all. Having ICP is really worrying as it can end with stillbirth. Also, the fact that I was in a country where I did not have health insurance made all of this harder. I went almost three weeks without medication after having been diagnosed due to insurance issues.
During the rest of my pregnancy I found a lot of support on the ICP Care Facebook group. It is always good to find people who are there for you to solve your doubts and listen to you. Especially to me it was a life saver, as all my family and friends live in another country.
My bile acid levels went down with the Urso medication; and even though I was still itchy, I just tried to focus on being positive and staying strong for my baby. At 33w5d I went into spontaneous labor and gave birth to my baby boy, just a day after my fourth NST. We spent 9 days with him in the NICU, and it has definitely been one of the hardest moments my husband and I have gone through.
After all this happened, I decided to spend some of my time helping people feel better about ICP, and to solve their doubts. I felt like I needed to give back, as an ICP Care volunteer for the Español support group and now the Postnatal support group. Also, I am an administrator in two other Facebook groups, one for moms of preemie babies, and another one for our neighborhood. It feels good to give back to the world, and I consider myself lucky to be a part of the ICP Care Team volunteers and ICP community.