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“My Story Could Have Ended in Tragedy” By Tenauh Lopez (ICP Care).
June is ICP (Intrahepatic Cholestasis of Pregnancy) Awareness Month, ICP is a medical condition where women experience a very severe itching during pregnancy. PregnancyBeyond has teamed up with ICP Care. To raise awareness of this liver disorder. That develops during pregnancy. In which bile flow is impaired within the liver itself. This condition has been shown to pose a serious risk to the unborn baby.
In today’s post, one mom emphasizes the importance of raising awareness of this pregnancy-specific liver disease.
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My story began in 2012, I got married and we wanted kids as soon as possible. We started to try and conceive. I found out on the eve of my wedding that I was pregnant. We were super excited to start our new lives together and raise our future children. Unfortunately, the next day I woke up to heavy bleeding and took another pregnancy test which came back negative. My mother-in-law took me to the emergency room to verify that I had a miscarriage. We were deeply saddened that I had lost the baby. I knew it would happen at the right time. For the next couple of years, we consistently tried to get pregnant and failed. We visited many specialists and fertility doctors.
The test results showed that he had a lot of fertility problems and we would most likely need to do IVF in order for me to become pregnant. I also have Neurogenic Cardiac Syncope and was told I would not be able to have a child naturally. Ultimately, if I was able to conceive it would be a high-risk pregnancy that I would most likely be on bed rest my whole entire pregnancy.
At this time there was a lot of stress and we ended up getting divorced.
After my divorce, I became very depressed and thought I would never have the opportunity of becoming a mother and did not think it was possible due to previous miscarriages and my medical condition. After consistently trying for six years nothing happening you get very doubtful. In 2017, I decided if it doesn’t happen this year naturally I would save up for IVF. I wanted to try one round of it and if it failed my plan would be to adopt.
I was engulfed in my job and living life. Out of the left-field, I started feeling really nauseous. After so many negative pregnancy tests I thought I got a stomach bug. Then I remembered I was late on my period but only a day late and I really didn’t think much of it. Finally, it bothered me so much that I just went and bought a pregnancy test thinking it would be negative. Low and behold the test came back positive.
I was over the moon excited but worried that I would have a miscarriage again. I had my HCG test every week and I prayed that my numbers were rising and not falling. Further, I didn’t tell anyone that I was pregnant until I reached four months of pregnancy. My dad was the first one I told and he was in utter shock. Because he remembers the call we had a couple of months before. Telling him that I was really seriously considering doing one IVF treatment and adopting.
Around 4 months, I went to the doctor just for a general check-up because I started itching and sneezing. I thought it was just my seasonal allergies. I was taking Benadryl but it wasn’t helping. Also, I got bit by some ants at work and I am allergic too. I just thought it was just a reaction to that. It concerned me though since I was still itching 7 days after I got bit. I noticed that I started itching really bad at night to the point that it was keeping me awake.
My general doctor went on to tell me that during pregnancy this could be something serious with my liver. This scared me a lot and it concerned me knowing how it could affect my unborn baby. He drew blood and ran a blood test to check my bile acids. My OBGYN called me the same day and said to come in because he had drawn blood to do the wrong test. I was deeply
confused. She explained to me that there are two tests. One is to check your levels if you are not pregnant and the other checks your levels when you are pregnant because they vary.
At this point in time, I asked her what is the medical name for this condition that was going on with my liver. She told me Intrahepatic Cholestasis of Pregnancy or ICP. I was on pins and needles while I waited for my test to come back so I googled ICP. The first thing that came up in my search was a music band that paints their faces like clowns. I knew instantly that cannot be the right abbreviation. So I researched the medical name Cholestasis and found a support group ICP Care with a lot of information about this high-risk pregnancy.
A couple of days later my doctor called me back to let me know that I had a diagnosable bile acid level and I would need to start the medicine to treat ICP called Ursodiol. I don’t know which was worse the itching or the medication. My daughter needed monitoring with weekly non-stress test and biophysical profile ultrasounds. Another important part of treatment is early induction. My levels were high enough requiring me to be induced at 36 weeks.
During her biophysical profile ultrasounds, it showed she was measuring two to three weeks smaller than she should be. She measured 4 lbs 2 oz at my last ultrasound. My doctors prepared me for the possibility of her being in NICU for an extended amount of time. Also, they were afraid that her lungs may not be mature enough for her to breathe on her own. Their plan was to give me two steroid shots for lung maturity before induction.
Even with this added stress, I continued to work all the way up until the day I was induced. I started my induction on 3/12/18 at 7:00 am in morning. Lilac May Walker arrived weighing 4 lbs 6 oz at 11:52 pm on 3/13/18. Lilac defied all odds and regulated her temperature, breathing, and blood sugars all by herself. This meant she did not need any NICU time.
After she arrived, I stopped itching momentarily enough to see the scars that were left on my body from itching. After 3 days postpartum the itching returned and is still prevalent which is likely cyclical even though my bile acids are within in range.
Since my experience with Cholestasis of Pregnancy, I will continue to advocate to spread awareness about this condition with high risks for the baby. Many women still go untreated and undiagnosed. Fortunately for me, I asked questions and went to the doctor. If my story in any way will help save lives and create awareness I will continue. My story could have ended in tragedy. But I was lucky enough to be surrounded by a team of physicians, who were educated about the high risks. (Find more info. on ICP here)
READ: HOW ICP CHANGES YOUR PREGNANCY
The ICP Care:
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education. Raise public awareness, support the advancement of research, and improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals, and creating a supportive community for friends and families of anyone affected by ICP. We hope that one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy, resulting in less suffering and healthier ICP babies. Find them on Facebook and at www.icpcare.org
Join us over at the PB Moms Exclusive Circle, where we invite healthcare experts to prepare us for life after childbirth and motherhood. Go to: pregnancybeyond.com/exclusive-circle.
Follow PregnancyBeyond on Instagram, Facebook, and Twitter.
The post ICP : “My Story Could Have Ended in Tragedy” appeared first on PregnancyBeyond.
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]]>How ICP Changes Your Pregnancy?
How ICP Changes Your Pregnancy – Worth Every Itch, By Lyndsey Quist (ICP Care).
June is ICP (Intrahepatic Cholestasis of Pregnancy) Awareness Month. ICP is a medical condition where women experience very severe itching during pregnancy. PregnancyBeyond has teamed up with ICP Care to raise awareness of this liver disorder that develops during pregnancy. In which bile flow is impaired within the liver itself. This condition has been shown to pose a serious risk to the unborn baby.
In today’s post, one mom advises on the importance of early detection, diagnosis, and intervention.
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Last June, during Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month. I was diagnosed with cholestasis during the third trimester of my second pregnancy. It started at the end of May with mild itching on the soles of my feet. After three nights of no sleep, I turned to Google for support. Assuming that itching on your feet was mild. I was shocked to find out that it was the number one symptom of ICP. A disorder that affects pregnant women and can be fatal to their unborn child. Frantic with worry, I called my midwives as soon as the sun came up. I was surprised when they suggested I come down to labor and delivery that Sunday morning. For some blood work and a non-stress test. I was lucky that my midwife immediately suspected ICP. Also, promised that we would continue testing and monitoring until we had a diagnosis. ICP affects only one in 1,000 pregnancies. Many doctors miss the symptoms or are uneducated about current recommended treatment.
After we confirmed that at 30 weeks my daughter was doing well, I was sent home to wait the several days it would take to get my blood work back. My labs showed elevated liver enzyme numbers but the true indicator of cholestasis is bile acids number above 10. Only a few labs in the country run this blood test and it can take days or even a full week to get results. Symptoms of ICP often start well before your bile acids number are at the diagnostic range. There are many pregnant women that endure weeks of testing and uncertainty before getting a conclusive diagnosis.
Three weeks later I was officially diagnosed with ICP. The diagnosis felt simultaneously like a blessing and a curse. After weeks of waiting and not knowing what will happen with your pregnancy, you now know that you have cholestasis. You can schedule an early induction to lower your risk of stillbirth which increases at 37 weeks gestation. Start the medication Ursodiol which helps to lower your bile acids levels, protecting your baby while in utero. You also start bi-weekly NSTs to make sure your baby is active and thriving. Your doctor appointments quadruple, but if you’re lucky enough to have a team that is knowledgeable about ICP, you feel some relief at having a plan to protect your baby.
The last four weeks of my pregnancy felt long and stressful. At a time when you should be happy and excited about your baby’s arrival, you feel constant anxiety and stress about the health of the baby. For many women like myself, the itching increases in severity. Some days I slept only one or two hours the entire night because I was so uncomfortable. I barely had the energy to care for my active little toddler. There was no energy to prepare my daughter’s room, wash baby clothes, or do ordinary nesting activities. I spent the little mental energy I had arranging care for my son during my endless doctor appointments and upcoming induction. Also, I remember once crying on the phone to his preschool who called to tell me he was upset and needed to be picked up. I was hooked up to a fetal monitor watching as my daughter failed an NST, fearing for my daughter’s life but feeling the guilt of not being there for my two-year-old son when he needed my comfort.
Finally, our induction date arrived. Although I was happy that the induction had finally arrived I was nervous. At 10 pm on a Monday evening, I was given my first dose of Cytotec. After three doses and 16 hours, my labor was not progressing. I was feeling very emotional and exhausted by the hours of unproductive contractions. As I took a break from the induction medication and asked for some time to be alone with my husband, suddenly my water broke naturally and labor progressed quickly. It wasn’t long before I held my beautiful, healthy daughter in my arms.
Two hours after her peaceful entry into this world, the nurses started weighing and measuring my daughter. As the nurses proudly announced each statistic, declaring her good health, my husband snapped photos. I remember that I couldn’t focus on anything they were saying and suddenly I was vomiting and losing consciousness. The nurses and midwives thought I was just responding to postpartum hormone fluctuations and told me not to worry. I continued to get sick and fade out when one of the nurses discovered I was losing a lot of blood. Suddenly everything was happening very quickly. They couldn’t get ahold of a midwife or doctor so my labor and delivery nurse made the lifesaving decision to start me on Pitocin immediately. Despite the Pitocin, I was hemorrhaging quickly and my midwife started to remove the placental pieces that were still inside of me. This procedure was one of the most painful things I had ever experienced but it was life-saving and eventually I was told I was stable. The beautiful moment of my daughter’s birth had been followed by a terrifying hour where I wondered if I survive.
In the ICP community, we have a common saying which is “worth every itch.” There is no better way to explain an ICP pregnancy. So quickly your pregnancy can go from healthy, normal, and exciting to scary. After weeks or months of stress, anxiety, and endless itching, you finally get to hold your sweet baby in your arms and you know without a doubt that every single moment of discomfort and fear was worth it to have this sweet little love in your life. Unfortunately for some families, ICP is not caught in time and they lose their sweet unborn child to a disorder that is very rare. After my own experience, I am so thankful to have had a medical team that was knowledgeable about ICP and to the ICP Care community that provided me with support and information throughout my pregnancy. (Find more info. on ICP here)
ALSO SEE: THE ITCH I FELT WAS LIKE ANTS CRAWLING UNDER MY SKIN
The ICP Care:
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education. Raise public awareness, support the advancement of research. Improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals. Also, creating a supportive community for friends and families of anyone affected by ICP. We hope that one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy. Resulting in less suffering and healthier ICP babies. Find them on Facebook and at www.icpcare.org
Join us over at the PB Moms Exclusive Circle. Where we invite healthcare experts to prepare us for life after childbirth and motherhood. Go to: pregnancybeyond.com/exclusive-circle.
Follow PregnancyBeyond on Instagram, Facebook, and Twitter.
The post How ICP Changes Your Pregnancy – Worth Every Itch appeared first on PregnancyBeyond.
]]>The post My ICP Story – Ants Crawling Under My Skin appeared first on PregnancyBeyond.
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My ICP Story: ‘The Itch I felt Was Like Ants Crawling Under My Skin’, By Lia McKernan ( ICP Care),
Generally, June is ICP (Intrahepatic Cholestasis of Pregnancy) Awareness Month. ICP is a medical condition where women experience very severe itching during pregnancy. For instance, PregnancyBeyond has teamed up with ICP Care to raise awareness of this liver disorder. That develops during pregnancy. Generally, in which bile flow is impaired within the liver itself. This condition has been shown to pose a serious risk to the unborn baby.
In today’s post, one mom warns about the dangers of itching during pregnancy.
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September 20, 2016, I had the most terrifying and wondrous day of my life. That day, my son Maximilian was born. Max joining us earthside went absolutely nothing as we’d anticipated. A rare and sometimes dangerous diagnosis. Intrahepatic Cholestasis of Pregnancy, at 35 weeks gestation landed me an induction 4 weeks before my due date. I started presenting symptoms about a week before my diagnosis. My main symptom is extreme itchiness all over my body, hands, and feet. I had no accompanying rash.
Don’t Miss: ONE HEARTBROKEN MOM SHARES HER ICP STORY
The best way I can describe the itch I felt was like ants crawling under my skin. After a bit of research and I knew in my gut this was ICP, even before my confirmed diagnosis. Untreated ICP pregnancies have a host of risks. Including meconium staining, preterm labor and delivery. Also, fetal distress, maternal hemorrhage, respiratory distress syndrome, and the risk of stillbirth skyrockets to 15%. My husband and I went from hope, joyful anticipation, and relative calm, to fear, worry, and panic. We needed to get this baby out safely, and we needed to do it immediately. All the natural birthing classes, breathing exercises. Even working with our supportive doula could never come close to preparing us for this.
We checked into the hospital on the evening of September 18, 2016. I remember feeling so incredibly relieved to arrive. Because that meant I’d be hooked up to a fetal heart rate monitor until our baby was born. From the moment I suspected my symptoms were from cholestasis to my confirmed diagnosis. To the second before I was hooked up to that monitor. I was a wreck. I would obsess over every movement, every kick I felt or didn’t feel. Also, I was terrified to go to sleep each night. Fearing if I wasn’t awake to constantly monitor movements, our baby may not make it to the morning. But here we were, finally, after what seemed like a lifetime from hearing the word ‘cholestasis’. 40 hours of labor later, with several interventions and little progress, we made the call. Get. this. baby. out. now.
Maximilian William was born via cesarean section Tuesday, September 20, 2016, at 1:51 pm. 7 pounds, 10 ounces – at 36 weeks! Can you believe it? We did it. We made it. And here we are, almost two gorgeous, exhausting, perfect years later. I love you wholly, unconditionally, and ever so fiercely, my miraculous Max. (Find more info. on ICP here)
The ICP Care:
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education. Raise public awareness, support the advancement of research, and improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
We do this by raising awareness of the condition. Distributing educational materials for patients and medical professionals. Also, creating a supportive community for friends and families of anyone affected by ICP. We hope that one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy. Resulting in less suffering and healthier ICP babies. Find them on Facebook and at www.icpcare.org
Join us over at the PB Moms Exclusive Circle. Where we invite healthcare experts to prepare us for life after childbirth and motherhood. Go to: pregnancybeyond.com/exclusive-circle.
Follow PregnancyBeyond on Instagram, Facebook, and Twitter.
The post My ICP Story – Ants Crawling Under My Skin appeared first on PregnancyBeyond.
]]>The post My ICP Story: ‘A Very Serious and A Deadly Condition’ appeared first on PregnancyBeyond.
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My ICP Story: ‘A Very Serious and Potentially A Deadly Condition’, By Crystal Abram (ICP Care).
In general, June is ICP (Intrahepatic Cholestasis of Pregnancy) Awareness Month. ICP is a medical condition where women experience very severe itching during pregnancy. For instance, PregnancyBeyond has teamed up with ICP Care to raise awareness of this liver disorder. That develops during pregnancy. Particularly, in which bile flow is impaired within the liver itself. Also, this condition has been shown to pose a serious risk to the unborn baby.
In today’s post, one heartbroken mom shares her story.
Oh, that infamous ‘itch’ that some proclaimed to be normal while pregnant. 2016 was a very exciting time for my husband and me. As we found out we were going to have a precious baby girl. Around 15 weeks, I had very intense itching that went on for weeks, and all I was told, was ‘oh it’s part of pregnancy’. Weeks went on and I continued to believe it was part of pregnancy.
Three weeks went by and the itch was worse. I looked up online intense itching while pregnant, and that’s when I learned about Intrahepatic Cholestasis of Pregnancy (ICP). This was foreign to me, I had never heard of this. I had a 2-year son at home, and I never had this condition with him. That same day I called my doctor’s office and begged to get tested. Because based on what I read about this high-risk pregnancy condition. It was a very serious and potentially deadly condition for my unborn daughter.
I went in for labs, and two days later I received my blood test results confirming the diagnosis of ICP. My bile acid blood test results were 72, and I prescribed the medicine to help reduce the bile acids. I started taking 500 mg of Ursodiol one time a day. I went in for follow up appointments over the next few weeks and for a routine ultrasound at 28 weeks. Unfortunately, that’s when it was discovered my precious daughter, Victoria didn’t have a heartbeat. I felt like I was in a dream, and that I was desperately wanting to wake up from. As I sat in the doctor’s office, I was avoiding the phone call I had to make to my husband while he 
was at work that morning. I called my sister-in-law first with the bad news, and once she arrived, we called my husband and told him. I waited there at the doctor’s office until my husband arrived. On Friday, May 13th, 2016, we went in to have our daughter. I never thought in a million years, that instead of leaving the hospital with our daughter in a car seat, I left with a box of pictures of her being stillborn.
The doctors initially didn’t want to test me for this because based on the statics this condition is typically seen or diagnosed during the last trimester. I was told that the next time I get pregnant they will test me for ICP asap and not wait. In August 2017, we found out we were expecting again, and at the doctor’s office, I was immediately tested for ICP at 6 weeks pregnant. My bile acids were already at 14. I was immediately started on the correct dosage of Ursodiol, at 900 mg a day, and referred to Maternal-Fetal Medicine.
These high-risk pregnancy specialists have experience in the proper treatment and management of Cholestasis of Pregnancy. With this pregnancy, there was a much better game plan set. I had scheduled Non-Stress Tests- (NST) and Bio Physical Profiles (BPP) done throughout the pregnancy, and the plan delivers by 37 weeks, due to my previous stillborn daughter. The highest my bile acid got with this pregnancy was 20, and my medication was increased to 1200 mg a day. The doctors continued to monitor and watch our son, and I delivered a healthy baby boy Aydan at 36 weeks and 3 days weighing 5 pounds and 1 ounce.
My hopes are with more research there will be a cure in the future for ICP. My experience is one that no Mother wants to only have pictures of a memory of their child. I would advise any expectant mom to continue to fight to be tested, and don’t let anyone say ‘Oh it’s normal to itch intensely while you’re pregnant’. Please always advocate for yourself and your unborn child! (Find more info. on ICP here)
About The ICP Care:
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education. Raise public awareness, support the advancement of research, and improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals, and creating a supportive community for friends and families of anyone affected by ICP. We hope that one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy, resulting in less suffering and healthier ICP babies. Find them on Facebook and at www.icpcare.org
Join us over at the PB Moms Exclusive Circle, where we invite healthcare experts to prepare us for life after childbirth and motherhood. Go to: pregnancybeyond.com/exclusive-circle.
Follow PregnancyBeyond on Instagram, Facebook, and Twitter.
The post My ICP Story: ‘A Very Serious and A Deadly Condition’ appeared first on PregnancyBeyond.
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