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CHOLESTASIS AND STILLBORNS

Itching could not be more terrible than with Intrahepatic Cholestasis of Pregnancy (ICP). You are probably thinking that itching is normal with pregnancy, right? Nothing is more frustrating than not being taken seriously when you are pregnant and having severe symptoms of itching. The itching that goes along with ICP is unlike any other type of itching. There is nothing visibly wrong, no rash, nothing, because it is all internal.

The itching is constant and takes its toll on the soon-to-be mom. There are other symptoms that few doctors pick up on. The itching leads to depression and feelings of not being taken seriously by the medical community. In reality, ICP is a very serious pregnancy condition. It is a disease of the liver and results in high percentages of stillborn babies and mothers are at risk too, if the medical community does not treat it as a serious medical condition. Approximately three to four weeks prior to having my son in March 2005, my health during pregnancy began to deteriorate very quickly.

I was a very healthy, active twenty-six year old and this was my first child. Toward the end of February I began to suffer from severe fatigue. I was still working full-time as a forensic scientist, but I could barely stand for any duration of time and was absolutely exhausted. Of course, everyone attributed it to being normal during pregnancy and since this was my first child, I didn’t know anything. Then I began to lose weight, which alerted my doctor to do an ultrasound. Everything looked fine on ultrasound.

I had absolutely no appetite for the last month of my pregnancy and it was actually more of a chore to eat. Approximately two and a half weeks prior to having my son I suffered from severe vomiting and became so dehydrated that I had to be hospitalized and given IV. At that time I was told that I had “the flu”. I recall being released from the hospital during the week on a Wednesday and then waking up that weekend with severe itching on the bottom of my feet. It was really bizarre to me because I had never had any type of itching like this before and there was nothing visibly wrong – no rash, nothing.

I called my mom who is a nurse and told her about my symptoms and she thought I should speak with the on-call physician immediately. So, I called the physician and she asked if I had used any new type of soaps, detergents, anything that I may be allergic to. I couldn’t think of anything that I had done differently. I felt really silly for even calling. She advised that I take Benadryl and that if my symptoms did not go away to call on Monday. The itching of course did not go away but became worse and I was itching everywhere from my scalp to the bottom of my feet.

I went to work on Monday and was discussing it with my co-workers. I recall one of them jokingly mentioned to me that I might have mites from being hospitalized. I felt really weird going to the doctor because there was nothing wrong with me except that I was itching all over the place. Another one of my symptoms was that I had very dark urine. I went to my doctor and told him that I had severe itching. He thought right away that I might have Intrahepatic Cholestasis of Pregnancy. I had never heard of it before nor did it run in my family.

My doctor said that as long as I was induced there shouldn’t be any problems. They would need to check my bile acid level in my blood. He said he would rush the results and that hopefully I would have the results in a week. In the meantime I should continue to take Benadryl. He said he would induce me at 37 (! ) weeks and at this point I was 36 weeks along. Because my husband and I had just moved, I did not have access yet to a computer with internet service, so I couldn’t look the disease up, but I told my mom about it and she told me that her and my dad were going to fly out to be with me.

Since no one was saying much I knew that it had to be serious. That would probably be the longest week of my life. It was an emotional roller coaster. The itching was so severe that I had scabs and scratches all over my body. It was terrible. Thinking about it makes me itch. I also had no appetite, and was depressed. The doctor finally called me the next Monday and told me that I would need to come in to the hospital and be induced because “my levels were way off the charts”. My husband and I rushed to the hospital, where I was induced and on March 1, 2005/

I gave birth to a healthy baby boy. I was told by the physicians that the itching would all go away within a couple of days and I remember it taking about two weeks for the itching to completely go away. Story over? Not so… Approximately three days after I had my son I began to feel really ill. I had severe vomiting. I went to the doctor because I was having right abdominal pain with severe vomiting. I had to go to the emergency room to receive IV because I was so dehydrated. I was then sent home and about two days later I was in severe abdominal pain.

I called the on-call physician of my OBGYN group and told her that there was something wrong so she had me admitted to the hospital where I stayed for approximately one week. I had elevated liver enzymes and an enlarged liver. I saw a gastroenterologist and was tested for liver diseases such as Hepatitis C, which all came back negative! I was finally released from the hospital, but still under the care of the gastroenterologist who continued to test me for various liver/gallbladder diseases. My liver enzymes remained elevated.

I continued to have upset stomach and a loss of appetite. I was on a very restrictive diet because my body could not handle any type of fatty food. I was also seen by liver specialists and after approximately six months I had a liver biopsy, which showed mild fat in the liver. I am rather petite, 5’2”, weighing in at about 90 pounds, so there shouldn’t be fat in my liver. My gastroenterologist thought that I might have also had fatty liver of pregnancy. I saw another liver specialist to get a second opinion and he pretty much said that ICP is not a very serious disease, that my symptoms were mild at this point, and that I probably did not have fatty liver of pregnancy because this is a more serious disease.

This was extremely upsetting to me, because this guy had absolutely no idea what I had been through, how sick I had been, and he had the audacity to tell me that my disease was not serious. To this day, almost two years later, I have had continuous elevation of liver enzymes. I have obviously done a lot of research on ICP. Overall, I think my OBGYN took the appropriate actions, but the length of time to obtain the blood test results was ridiculous considering the severity of the situation.

I also regret that I didn’t speak up about the itching or that my doctors never asked me about it earlier, because I did have earlier symptoms of itching, but it was always considered “a normal part of pregnancy”. I am very blessed to have a healthy boy. I have read numerous stories on the itchymoms.com website about ICP sufferers giving birth to stillborn babies and it breaks my heart.

Patients with ICP need to be monitored vigilantly. Doctors and nurses need to be more aware of this disease to catch the early signs and thereby reduce the number of deaths from this disease. The insensitivity of some of the liver specialists I have seen was disgusting. They do need to understand that this is a more serious disease for both mother and baby.

I strongly believe that any mother who has ICP should receive extra monitoring during pregnancy as well as follow-up care after having the baby. Furthermore, ICP has been linked to other more serious liver diseases and this should send a red flag to any physician (Ropponen et al., Hepatology 2006;43:723-728). My recovery process has been a very long one. It has been much longer than what I was told. After I had my baby, I felt terrible and instead of going to different doctors and being in and out of the hospital they should have just kept me in the hospital because of how ill I was.

I only hope that through my story other women, men, doctors, medical professionals can become educated about this disease. Medical professionals should recommend that women with ICP go to www.itchymoms.com as a support group. A lot of the information on this website is invaluable. I only wish I had known about it when I was pregnant. What every physician needs to know is that each case of ICP is going to be unique and it requires immediate attention and absolute follow-up care because lives are at stake.

Heather Sargent

single artery vessel cord

I am 23 weeks pregnant to this date but when they diagnosed my baby and I as having only one single artery vessel cord I was scared and nervous. I went to the doctors to get a level 2 ultra sound thinking it was just to check something then I get taken into a counselor... (I was alone at this apt.)

She told me the news and why I was there to get this test.... She said that my baby could be born with Down syndrome, or just abnormalities.... She also mentioned the many tests that I could consider... she also let me know that the amino test would be the best to consider... I let her know that I would think about it and would have to talk to my fiancé about it.

I left the hospital in tears and cried in the car in the hospital parking lot for 3 hours. I did not know what to do. So when I got home I talked to my fiancé when he got home from work and he said that we should try the amino test.... I called the same day and made my appt. for Monday Feb. 26, 2007.

The amino didn’t hurt that bad. It was painful and crampy. But we needed to know... the doctor said we would have the 97% positive results on Thursday. Me and my fiancé are very nervous parents right now... I just hope that my first child is born with no problems.


Melissa

Gestational Diabetes x4

I am on my 4th successful pregnancy (others were early missed miscarriages) and have had gestational diabetes each time. During my first pregnancy I was uninsured and went to the local Planned Parenthood to make payments and see the doctor that they could arrange for me.

I barely passed the diabetes test and they did not have me retest. When I changed to the dr I was put on a diet and closely monitored. When I delivered my son 4 weeks later he appeared to be post term, although he was 2 weeks early. They warned me to insist on monitoring with any future pregnancies because it looked like my placenta was having problems.

With my second son I was diagnosed with gestational diabetes during the routine screening and went to see the dietician every 3 weeks. I was able to control my numbers through diet and all appeared to be going well. At 34 weeks I began failing the Non-Stress Tests and was going in every 3 days for monitoring. At 35 weeks 6 days I failed a Stress Test and my son was born 1 hour later by emergency c/section. The placenta had again begun to fail and he was safest on the outside. He spent 8 hours in the nursery for monitoring and then was able to room with me.

With my 3rd son I was placed on the diet as soon as I got pregnant and monitored my blood sugar throughout. I was able to control my numbers with diet and did not have any trouble with non-stress or stress tests. I began to go into labor with him at 36 weeks 4 days and the dr decided that it was better to go ahead and deliver him. He didn't need any special care except that he had to have his blood sugar monitored (as usual with gd).

During one of his first breastfeeding sessions he was very lethargic and not sucking properly. I asked the lactation consultant to take him to the nursery because "something is wrong." She came back 1 hour later to let me know that his blood sugar had been 40 (very low) and that they gave him sugar water and would return him after he stabilized. It took about 2 hours and he started on sugar water and formula but he was healthy and we never had a problem with feeding after that.

This time I've been on the diet since finding out I was pregnant. I had some issues with my fasting tests during the first trimester but not excessively high. After I got into the 2nd trimester things seemed normal. At about 22 weeks I started failing fasting tests again and the diet doesn't seem to be working. I will be going to see the specialist this week. I am sure that I will need insulin this time. As long as the baby is healthy I won't mind.

I don't even mind knowing I will have a repeat c/s. I had my first (non-medicated) vaginally so I know how that can be and don't feel any remorse. I just want my baby to be healthy and home. I've only got about 11-13 more weeks to go, I can do anything for that short amount of time to have a healthy baby.


Yabby

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

Yabby

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