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Cholestasis of Pregnancy

When I was 7 months pregnant, my appendix burst. When I got home from the hospital and began to recover I started to itch all over. I really thought my skin was just really dry because the hospital was so dry. However, no matter what kind of lotion I used, nothing helped. Also, the condition continued. I went on-line to research itchiness during pregnancy. Everywhere I looked said that itchiness during pregnancy was completely normal. One site contained one sentence saying that itchiness was normal, but it you itched all over without a rash to mention it to your physician because it could indicate a liver condition. I brought the itchiness up to my doctor and she took some blood to run a liver function test. When it came back, my levels were elevated. I was not told how elevated or what this could mean. She took blood again to check the levels again.

At this point in my pregnancy I was being monitored weekly because of my gestational diabetes, as well as the burst appendix. Between the appointment where I was told my levels were elevated and my next appointment, I did some more searching on the internet and found out about ICP. I was panicked! The fact that there is an increased risk of stillbirth is frightening. I began to pray very hard! At my next appointment I was told that my levels were elevated again and that they were now going to monitor me bi-weekly. I was sent to the hospital for a bio-physical report on the baby. The baby seemed fine and they sent me home.

However, I was still itching miserably and getting very little sleep. I was also reading more on the condition and learned that monitoring the baby does not help as the danger seems to be a sudden event! When I went to the hospital the next time to be monitored again, my levels were up yet again. They finally consulted a perinatologist who understood the dangers of the condition and immediately admitted me to the hospital and started to induce labor. I was at exactly 37 weeks.

Fortunately, I delivered a healthy 5 pound 5 ounce little boy. If the perinatolgist had not been consulted, I may not have my little boy. Many other women have gone undiagnosed or have not been treated appropriately and have lost their babies. I am currently 6 weeks pregnant with my second child. My first liver function test already shows elevated levels. However, not enough research has been done to know what this means to me, or my baby.

Please, help get the word out to women that this condition exists! Many women may be in danger and they don’t even know it since most of the information for pregnant women says that itching is normal! We also need to help the medical profession get the word out as to how to diagnose and treat this condition. Many OB/GYNs are unaware. Finally, we need research on this condition. What is the best treatment? What are the long-term effects on the children? What are the long-term effects on the mothers?

Thank you and God Bless,

Amy Warfield

ICP

In November 2003 I found out I was pregnant and due in August. I was having a wonderful pregnancy, feeling great, eating healthy, doing my “fit mama” exercise videos, and working. During my third trimester I became itchy all over my body and mentioned it to my doctor during one of my check-ups. After a blood test, I was diagnosed with Intrahepatic Cholestasis of Pregnancy, also known as ICP.

ICP is rare and affects 1 to 2 pregnancies in 1000. The risks are premature labor, fetal and maternal hemorrhaging, fetal distress, and most importantly, stillbirth. 25% of babies whose mothers have ICP are stillborn. ICP refers to a specific liver condition in which the normal flow of bile is impaired in a woman's body resulting in severe itching. It usually begins in the third trimester, when hormone concentrations are at their highest levels. There is still much to be learned about the exact causes of ICP and its manifestation, but researchers are currently investigating genetic, hormonal, and environmental factors. There has been some research that indicates a particular gene mutation in some ICP patients, but much is yet to be learned.

I was extremely grateful that my doctor caught this. My scheduled delivery date was set for July 20th and I had several appointments in between to make sure the baby was still alive and had not been poisoned by toxic concentration of bile salts passing through the placenta. I have heard that several women who have ICP/OC and don’t know it, become institutionalized because the itching is so severe or people think they are crazy because it is so rare that sometimes doctors don’t know about it. I have also read there is a suicide rate associated with it.

The itch occurs anywhere where blood vessels are which is everywhere. It is worse at night and concentrated in the hands and feet. I even remember trying to scratch my tongue and inside of my nose. During one of my check-ups the nurses were surprised I had it. They said the women that they’ve seen diagnosed usually show up with full-length scabs on arms and legs. My itching became so bad I could not sleep. I took between 4-5 showers daily because the water was refreshing on my body. It got so bad I was prescribed slipping pills, which are usually a “non-n” for pregnant women.

I tried to continue working and doing lots of crafts to take my mind off the itching but the sleeplessness caught up with me and I could not drive to work. Maria-Antonia Lucille (Macy) amazed us all by being born healthy on July 13th 2004. Amazing Macy continues to surprise us daily with her huge dimples and contagious smile.

Both of us want to spread this information on behalf of those that have not been as fortunate to know this condition existed.

My story has a happy ending.

toni and macy

ICP

I was diagnosed with ICP when I was 36 weeks pregnant. I started itching at about 34 weeks and thought it was normal pregnancy itching. As the days passed the itching continued to get worse. At 35 weeks I had a feeling the itching wasn’t normal and called my doctor.

Lucky for me he had heard of ICP and had me come in for a blood test. There are many women who have doctors that have never heard of ICP and think the itching is normal. I went in to the doctor at 36 weeks (March 20, 2006) and was diagnosed with ICP. I was told that it increases stillbirth up to 10%. He put me on medication and sent me home. That week seemed to be the longest week of my life. I got a lot of information from the web site www.itchymoms.com . The message board was great as well. Talking to other women who were going through or had been through what I was going through was such a big help. It also made me aware of how bad it could get.

Hearing what women went through past the itching to the loss of their baby. It made me sad and scared. The itching got worse. I was scratching so hard that I developed bruises on my arms and legs. I also made myself bleed but I couldn’t stop scratching. The medication was supposed to help with the itching but it did little to help me. I was so scared of giving birth and never hearing my baby cry. I told my husband that when our baby was born I wanted to hold her no matter what. It was hard to get the image out of my head of holding my baby girl and her being stillborn.

There are many women out there who didn’t just imagine it they lived it. We had an amino done on Monday March 27 (37 weeks pregnant) that showed our baby’s lungs were not developed. My doctor wanted to wait until Thursday to induce. This scared my husband and I. Everything we read said to induce no later than 37 weeks. We were also scared about her lungs not being developed. At about 10:00 that evening we received a phone call from my doctor. He said after a day of putting out fires he went home and couldn’t get his mind off my case. He called a specialist who told him with Cholestasis you don’t want to wait; he said to get the baby out as soon as possible. He told us we needed to get to the hospital as soon as possible and they would start the induction when we got there.

At 1:23pm on March 28, 2006 I gave birth to a beautiful, healthy baby girl. I loved hearing her cry! I look back often and wonder what would have happened if my doctor didn’t stop to think about what was best. What if he didn’t call the specialist? Would I have heard my baby cry? What if my doctor was one of the doctors that say the itching is normal due to pregnancy? Would my situation have come out differently?

ICP has affected my life in so many ways. I want to have more children but that is a hard decision to make. I will most likely have ICP in the next pregnancy. Having to go through all of that again scares me. Many women suffer from this and don’t know. Many doctors are uninformed. My case is mild compared to what some women have suffered through.

Thank you for your time,

Jenny

Obstetric Cholestasis

My story begins with my second pregnancy. My first pregnancy had been happy and more or less comfortable. I had had some problems with high blood pressure but my first daughter was born healthy and well with a midwife at home. When I found I was pregnant again I returned to the same midwife for my prenatal care again. We were both concerned about preeclampsia and kept a close eye on my blood pressure.

Early on in the pregnancy I had problems with anemia, and slight urinary tract infections. I took care of both through diet and though the UTIs were never full-blown they were tenacious. We were all relieved to see that my blood pressure was staying nice and low, well out of the range of concern. This pregnancy was not as comfortable as my first; I assumed it was because I had a four year old to care for too and much less time for myself. I assumed the depression I felt was related to exhaustion, which in turn was related to insomnia and that that was all normal. I was also slightly jaundiced, most apparent in my eyes. Why we didn’t follow up on this I do not know.

By the last month of the pregnancy there was a much more sinister symptom keeping me awake at night. I was itchy. My palms were especially itchy and I would lie in bed at night rubbing them on the sheets, trying to not to scratch hard enough to make them bleed. My head and legs and belly itched too but as there was no rash I assumed that it was something normal, stretching skin maybe.

I went into labor spontaneously at 39 weeks, a week before my due date. Three days before that we had been to the midwife’s clinic for an ultrasound. The midwife and the technician had glowed with confidence that our baby was ready and well. They gave me the thumbs up and told me to be ready any day. Labor was quick and intense as it had been with my first. The midwife could not find a heartbeat when she tried to check with the Doppler. The gravity of that escaped me however, as the same thing had happened in the quick labor with my first. I was in the tub when my water broke and we all knew immediately that something was wrong. The water turned dark with meconium staining. My midwife looked alarmed but there was no time to discuss it, the baby was crowning and out.

As I pushed her out of me into the water everything seemed to move in slow motion. She was not the right color, she was not moving. The midwife swept her into her arms and started mouth to mouth. She swept the tiny mouth for something caught. She rubbed the baby vigorously. She started CPR. I, still in the tub, still attached, looked on helplessly and begged my baby to take a breath. Hurriedly she cut the cord and whisked the baby to the bedroom. I kept calling out, “Breathe baby! Please breathe!” until suddenly it seemed like it had been too long and I was then praying silently to God to take her and keep her safe.

In Mexico, where I live, there is a law that states that the dead must be cremated or buried within 24 hours of death. I knew at the time that we could also have asked for an autopsy but the thought of a stranger cutting up my sweet baby for an answer which we were told was unlikely to be conclusive was more traumatic on that day than my husband and I could bear. Four months after Wendy died I was up late, reading other mothers’ accounts of their stillborn babies. Before Wendy I had no idea how large a community there is, held together online by our common and unbearable loss. That night I happened to read in one account, “. . . the main symptom was itchy hands and feet, if you have this in pregnancy, go to www.itchymoms.com right now! Do not wait!”. I followed the link, hardly breathing in my fear and anticipation of what I would find. What I found was a list of symptoms, all of which I had had during my pregnancy with Wendy. Itching, Dark Urine, Pale Stools, Depression, Jaundice, Loss of Appetite.

When the first shockwave of grief and anger and horror had passed from the realization that Wendy’s death could have been avoided I called a friend, another midwife who had been at Wendy’s birth as my friend and doula. I told her what I had found and she sent me to the lab the next day for blood tests, a general liver panel. I had elevated levels of a number of liver enzymes. It wasn’t conclusive of course, four months post-partum, but I am sure. Since then I have read everything I can find about ICP and everything I have read reconfirms in my mind that this supposedly rare disorder is what killed my daughter. This disorder may be rare but I have found it quite alarming that other women who have the symptoms and suspect ICP find that their concerns are frequently dismissed by doctors. Why this should be so is a mystery to me.

I cannot imagine what a doctor or midwife could possibly gain by ignoring their clients’ fears, especially when the stakes can be so incredibly high. I hope that by sending you my story I will have some small part in raising awareness and perhaps Wendy’s death can serve a part in saving someone else’s. It is now a year since Wendy’s birth and I am pregnant again. I pray that this baby will grow safe and secure but I am already taking steps to strengthen my liver and if ICP returns I will not settle for half-hearted care.

I am so grateful to Itchymoms.com for providing information and a community of support for all parents who find themselves on this road.

With hopes for healthy mamas and babies,

Penelope

Cholestasis and Stillborns-THERE IS A STRONG LINK

My husband and I tried for over a year and a half to become pregnant with our first child, and were ecstatic when we finally got those two beautiful lines on the home pregnancy test in March of 2005. I suffered only mild morning sickness and felt great throughout my first and second trimesters. I developed Gestational Diabetes around week 28 and was treated for that with diet and exercise. Besides missing ice cream & pasta, I still felt good about my pregnancy and continued to anxiously anticipate our baby’s estimated due date of November 17th. I saw a specialist along with my regular OB/Gyn to treat the Gestational Diabetes. I had higher blood sugar levels in the morning and after a few weeks of trying to get those morning numbers under control, we talked about insulin injections in the morning to help level things out. I still felt like everything was under control; although I was starting to become concerned that I would have a large baby due to the Gestational Diabetes.

It was just after my diagnosis with Gestational Diabetes we had a 3/D ultrasound and found out we were having a boy!

When I was 30 weeks along, I started to get very itchy on my hands, feet, lower legs, and belly. I thought it was due to the ever-increasing number of stretch marks that had begun to appear and take over my body. I suffered in silence for four weeks. I would find myself waking in the middle of the night to scratch my belly, or my legs. I began to scratch more and more, finding the itching became burning in the evenings and in the middle of the night. Some days I found it hard to concentrate at work, as I tried to ignore the urge to scratch. A few times I cried because I was in such discomfort.

At 34 weeks I had an appointment with a doctor that was going to be our new family doctor. I made the appointment just to confirm that he would take myself, my husband and our son as patients, but since I was there, I casually mentioned he might as well look at the rash on my legs. It was very itchy and thought he might be able to tell me what it was. It took him less than ten seconds to tell me that I did not have a rash. “I have only seen this once before in over 1000 pregnant patients, he said. He asked me when I would be seeing my OB/Gyn next. I had an appointment later that morning, and he was pleased to know I would be seeing her right away. He asked why I hadn’t mentioned it previously if I had been itchy for weeks. I told him how I thought I was being a wimp, and I didn’t want to get a speech about how our bodies go through some strange things while we are pregnant and we just have to live through them, and so forth. He wrote something down on a piece of paper and told me to give it to my OB/Gyn at my appointment. I really didn’t think much of my new doctor’s findings, even after I read the piece of paper “Cholestasis?” was all it said.

Two hours later, I was sitting in the OB/Gyn’s office and I told her I had just been to see my family doctor. I told her how itchy I had been, how I had been waking up in the night and that I had him look at my legs, thinking I had a rash. I rolled up my pant legs to show her as well. “You don’t have a rash,” she said. “I know, and he told me to give you this.” I handed her the piece of paper and as she opened it, she nodded her head. Without saying anything she grabbed a lab requisition form and started filling out the boxes, she also grabbed a stack of forms.
“We still have to do some blood tests, but I want you to go straight up to the maternity ward from here for a non-stress test. I think you have Intrahepatic Cholestasis of Pregnancy or ICP and there are some concerns we need to talk about with that.” She went on to tell me that they needed to check my blood weekly to see how well my liver was functioning.

ICP is a liver condition in which the normal flow of bile is impaired during pregnancy, it is associated with an increased risk for infant stillbirth, premature labor, fetal distress, and hemorrhaging in both mother and child. They would need monitor me twice a week with a non stress test to make sure the baby was not in distress. They would not let me go past 38 weeks in my pregnancy, as the chances for stillbirth were much greater after that time. She wrote down a few things that she knew I would want to look up on the Internet when I got home. She also scheduled me to see the specialist who was helping treat my Gestational Diabetes later that day.

My whole world felt like it was crashing in on me. I phoned my husband in tears before I went up to the maternity ward and told him what I knew so far. I felt very frightened and alone. I felt awful for not mentioning the itching sooner. I felt that I could have put my little boy in jeopardy and not even known it.

The specialist’s appointment went somewhat the same way. No, I didn’t have a rash, yes the tests the OB/Gyn had requested were necessary and he was glad I had already had my first non stress test. He too pointed out that I would not be allowed to go past 38 weeks in that pregnancy. He no longer cared about my Gestational Diabetes and said that we weren’t going to bother with the insulin now. My pregnancy now had bigger issues.

When I got home that night, I Googled Intrahepatic Cholestasis of Pregnancy and found not as much information as I had hoped. I did happen to find a website, www.itchymoms.com and logged on to that. I was amazed at the small number of women on that website in the message boards. Knowing that the world has been made a lot smaller with the growth of the Internet, I thought I would find a larger number of women with the same problem as I had. It was an emotional evening for my husband and I as we read more about ICP. The hardest to read were the stories from women who had lost babies due to ICP. I was obsessed with reading as much as I could about ICP for the next three days. I was going to arm myself with as much information about ICP as I could before our next specialist appointment.

At our second appointment, I took the information I found from itchymoms.com and a few articles I found written by Harvard Medical Students and handed them to the specialist. I gave him 5 articles in all. He handed me one he had photocopied out of a medical journal from a few years before that. I told him that my husband and I had read everything we could find on the Internet about ICP, trying to concentrate on the information we felt to be from the most credible sources. We felt that from everything we read we wanted our son to be delivered at 36 weeks. We had read about the possible complications that could arise from a baby born that early and weighed it against the possibility of our baby being stillborn. We wanted our baby out, where we felt he would be safer.

The hospital where we scheduled to deliver had a policy in place that ICP patients (although there had only ever been 3 other cases before mine) were not to be delivered until 38 weeks. I had compelling arguments, backed up with reputable articles and my husband and I were able to convince the doctor to compromise with us and agree to induce at 37 weeks.
I can’t say that the next few weeks were stress free. Every time I had to scratch, it was a reminder that my body wasn’t working right, and that my little boy could be in jeopardy. I tried to remain calm, but it was hard. There were a lot of tears from both my husband and myself behind closed doors, but to the outside world, we tried to put on a brave face. I felt comfort in emailing and posting messages with the women I met on itchymoms.com. It was a community of people who really knew how I was feeling.

Waiting for the non stress tests seemed to be the worst. At one appointment I was waiting to check in with the admitting desk prior to my non stress test (the usual routine) and an elderly woman tried to bud in front of me in line. I was polite at first, but as she continued to push in front of me in line saying she had to get in first because she was scheduled for day surgery and she was late, I became angry. “You might be having surgery, but I am here to see if my baby is still alive, so you will just have to go to the back of the line and wait!” I started to cry and was very upset. I don’t think I had ever been that stressed out in my life.

I was induced at 37 weeks. It was a big production at the hospital. I had a doctor and a specialist and a few nurses of my own. My son had a few doctors and a few nurses as well. Counting my husband and my mother there were 12 people in the room when I delivered on October 29th, 2005. As soon as he was born, our son, Matteo, was taken by his team and assessed. He was crying and it was music to my ears. I was so happy that he was safe. I was fine after I delivered as well. No excess bleeding problems and no lasting effects from the ICP. It didn’t take long before I was jumping into motherhood and forgetting how stressful the weeks before had been.

I do remember though. I cry more often than I did before. I am thankful every day that I am one of the lucky women who have been treated for ICP. Our son is our miracle.

I am currently in my 26th week with our second child. I have been itchy since 15 weeks. I am being monitored just as closely with this pregnancy as with our first, but I am more stressed out than last time. I have had more time to research and learn as much as I can about the developments in treatment of ICP. There is no cure. There is little development in treatment of ICP. There is a little more information out there for pregnant woman about ICP, but it doesn’t seem to be getting the attention it deserves. Too many women lose their babies due to untreated and undiagnosed ICP.

Our hospital has now changed it’s policy on ICP deliveries. They will now delivery at 36 weeks. I was informed by our OB/Gyn that it was due to the information I provided to the doctor’s when I tried to get them to deliver at 36 weeks with our son. The policy has been changed and since I delivered one other mom has been induced due to ICP at that hospital.
I feel, in some way, grateful that our experience could help future babies and moms.

The number of registered members at itchymoms.com has grown rapidly since I first joined in 2005. I find it hopeful since more women are finding this resource and using the information it provides, but it makes me sad to think of the stress and heartache these women go through.

I am just one of many women who feel that this condition needs more attention. My story had a happy ending the first time, and we hope that this pregnancy will end with the birth of a healthy baby as well.

Thank you for taking the time to read my story.

Marni

Marni Pastres