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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

ICP a.k.a. ITCHNG!!!!!

After getting pregnant I felt great! Morning sickness was next to none and I was full of energy. The first trimester was wonderful! Then the winter weather started in and it all went down from here! I was having problems breathing and went to the doctor. He took one listen to my lungs and sent me straight to the hospital for x-rays. I found out I had bi-lateral pneumonia. I started a very high dose of antibiotics and went home. I had two more respiratory infections after that. But nothing was going to prepare me for what was about to come.

At 30 weeks I went into labor. Luckily I got to the hospital in time and they stopped it. But the following week I began to itch. At first it started at the bottom of my feet. I thought, "Great now I'm getting athletes foot from my husband!" much to my surprise it was not athletes foot. It then started on my hands, my tummy, my back, shoulders, face... it was EVERYWERE!!! Many people told me to "stop scratching it and it would go away", or my personal favorite- "ITS ALL IN YOUR HEAD!" but it was real! And I was scratching so much that I had open sores all over.

Many nights I would sit in the bathtub of cold water praying it would go away. I couldn’t sleep, I was constantly scratching. It would wake me from a sound sleep! The baby was not moving like he should either. I was in and out of the OBs office doing stress tests at least twice a week. My nurse at the OB office noticed me scratching and asked what was going on. As I was explaining it to her she got wide eyed and rushed me in for blood work. Come to find out... I had ICP, a condition where your liver starts to malfunction and your bile acid levels go up.

In some cases the baby can be still born- especially after 37 weeks. My levels were so dangerously high that they scheduled my induction the following day. I had a beautiful son, 7 lbs. 14 oz.!!! It was estimated that if I had carried full term- he would have been close to 11 lbs.!!!!! It took two weeks for the itching to stop after delivering my son. In the end- it was all worth it to have him in my arms.

It was a long bumpy road!!!!


jessica

Cholestasis of Pregnancy

My name is Jennifer and I am a mother to 3 beautiful children but my story actually begins when I was pregnant with my firstborn, Michael, now 7.

At around 4 months of pregnancy, I awoke one night to severe itching all over my body. It being my first pregnancy, I believed my doctor when he told me "itching was normal and not to worry." I was told to take Benadryl, take Aveeno baths, and go to bed. No doubt my doctor thought of me as a whinny person. My next visits were the same complaints. I showed him the marks I had left all over my body and the nails that had been worn down to the quick from scratching-endlessly! I always got the same response..."Take Benadryl and go to bed."

At 37 weeks, my water spontaneously broke. I went to the hospital and 12 hours later, delivered my precious baby boy. I was surprised when he weighed in at barely over 5 pounds and only 18 1/2 inches long! My mother, who was in the room with me, remembers my placenta coming out charred black-not red as it was supposed to be.

On my second pregnancy, at 32 weeks along, the itching was back. Now moved to another state, I confronted my doctor about the itching. I told him the severity and also explained it was in my first pregnancy as well. He ran some Liver Function Tests (blood work) and I received a call back. I was told to go to the nearest emergency room for monitoring. The normal ranges for that particular lab (all labs vary) were 0-40 and my counts were in the 300's.

I went in and was monitored for 24 hours. I was told by a different dr. in the hospital, that I had what was called " Intraheptic Cholestasis of Pregnancy" (or known as ICP). I was also told it was NOT harmful to the baby and that it's just a nuisance in some pregnancies. All would be fine with the baby and the itching would go away once I delivered. Naturally I was relieved-until I went home and researched the condition further on the Internet.

I quickly found out this thinking was a VERY common misconception. MANY doctors do not know the current treatment and are under the assumption the condition is benign. Yet, as I have learned, MANY more doctors do not even know this condition exists. Every document I read said to deliver NO later than 37 weeks to prevent death as the rate of death occurring after 37 weeks, triples (even under 24 hour monitoring of the baby in the hospital!). I frantically called my doctor and told him what I had read and what I was diagnosed with in the hospital. I saw him the next day and he verified what I had read about the condition as being true and that it is NOT a benign condition. I turned 33 weeks on the day I saw my doctor and we developed a plan to deliver early.

At 35 weeks, I went in to the hospital for an amniocentesis to check for lung development. The baby's lungs were not quite developed and so waited one more week for induction. I gave birth to a healthy baby girl at 36 weeks. She weighed 6 lbs. 8 ozs. She had some trouble breathing at first, but otherwise did extremely well. She did not spend time in NICU. My placenta also appeared normal this time around.

During my third pregnancy, at 13 weeks pregnant, I woke up one night-and the itching had returned with a vengeance! I went back to the same doctor who delivered my second baby. My counts had started elevating and I found myself in the hospital at 23 weeks. My LFT's (liver functions) were in the 300's and I was going through pre-term labor. After several shots to stop the labor, I was able to go home the next day. Again I went into labor at 26 weeks. My urine was very dark at this point, and my LFT's had climbed to over 400! The contractions came to a stop-thankfully, and again went home.

I did make it to 37 weeks, when I was induced and I delivered my third child, a boy. I am fortunate and I thank God for my beautiful children!

I want to get the word out that if any one out there is experiencing severe itching, get it checked out immediately! MANY doctors are not aware of the condition and even IF they are, the "old schoolers" still believe cholestasis is benign! If this is the case, find another doctor immediately! It is very urgent to get the best care possible to get through this condition! I found a very helpful website at www.itchymoms.com. This site lists all the symptoms, course of treatment, what questions to ask your doctor and even all the current date to bring him/her, and offers THE best support group! We have seen many women lose babies because of some doctor's ignorance...and even more sadly that a lot of women out there doesn’t know this disease exists! So, get educated and learn as much as you can! With the proper guidance and treatment, moms CAN deliver healthy babies!

~Jennifer Hall~ (3 time ICPer)


Jennifer

AM i PREGNANT OR AM i MiSCARRiNG?!?!

Hey my name is Charla and I am 17 yrs of age. My last normal period was in October. November period was 3 days and just spotting, and I skipped December. Me and my boyfriend have been together for a while and I just found out last Tuesday that I was pregnant. I took 3 pregnancy tests and all 3 said positive. I was happy and so was my boyfriend. I thought I was about 2 months.

Yesterday around noon I started having sharp period pains. I called my dad, and he took me to the ER. They did a blood and urine test, then they took me to go for an ultrasound, they did a vaginal and regular, and it turns out that I am about 2 weeks pregnant, but while I was at the hospital, I started my period. I asked all the nurses what was going on, and they did all kinds of tests (let’s just say I was at the hospital for around 6 hrs.).

They said that I could possibly be having a miscarriage or I could be one of the women who have their period and are pregnant. I also read that having sharp period pains and bleeding is a sign of having a miscarriage. My heart was broken. I have to go again to get my blood taken on Friday and my hormone level has to double!! If not they said that I could be having a miscarriage. In 2 weeks I have to go get another ultrasound.



Charla