Wednesday, June 10, 2015

ICP and the Scars of Pregnancy

     My lower abdomen is home to four fairly straight lines, one on top of the other, beginning a couple inches in from one hipbone and ending a couple inches out from the other hipbone.  These lines and the flap of flab that hangs over them are a reminder of how my beautiful babies entered this world. The are not, however, the only scars of pregnancy my body sports.  I also have scars on my toes.  The consequence of literally scratching myself raw during my fifth pregnancy.  The consequence of living with a diagnosis of cholestasis of pregnancy, or ICP for short.

   Cholestasis of Pregnancy is a fairly rare condition that most often presents in the third trimester of pregnancy.  It poses no danger to the mother, but the same cannot be said for the baby.  The further along the pregnancy progresses, the more the risk of danger increases for the baby, with the greatest risk being stillbirth.  Delivery is usually recommended at 37 weeks, but sometimes it becomes necessary to deliver even sooner.  The itching that accompanies ICP is intense.  I have nothing to compare it to, and there is no relief until delivery.  There is a medication that is prescribed which helps to reduce the risk of danger to the baby, but it does not necessarily lessen the itching.  For me it did decrease the itching fore a short time, but as the pregnancy progressed, the itching returned and intensified.  I have developed cholestasis in my last two pregnancies, and I have read that June is ICP awareness month.  So I wanted to share my stories.

ICP Baby #1

     I was a little over 38 weeks pregnant with our soon-to-be third living child when itching hands and feet woke me up in the middle of the night.  It had been a long pregnancy.  Eleven months earlier we had lost a pre-born baby boy at 20 weeks.  I spent every minute of the pregnancy wondering if I would be able to hold this baby in my arms, or I would bury him too.  Like most women, I worried during the first trimester.  I was petrified that I would miscarry during that time, but it didn't end when at 12 weeks we saw and heard that wonderful heartbeat.  I knew that I had already been in that minority of women who lose a baby AFTER the first trimester, and there are no guarantees.  My fear escalated to a level I didn't even know existed when our community experienced an epidemic outbreak out of fifth disease, which if contracted during pregnancy, can kill the baby.  I got tested and sure enough I was not immune.  I spent the next three months leaving our home only once a week to go to Mass at 6:30 a.m. when there would be no children in attendance and very few adults.  We pulled our daughter out of preschool and my husband (who was immune) took on all the extra responsibilities like grocery shopping.  Overboard?  Probably, but to this day I am glad we did it. Our precautions weren't in vain. In fact, my mom actually did end up getting fifth disease.  It was everywhere and I couldn't fathom losing another baby.  I would have done anything in my control to avoid potential harm to him.  So that is what we did.

     I cried through all of my check-ups that pregnancy.  The 20 week ultrasound (where we had learned of the death of our previous baby) was especially difficult, but all was well this time.  I relaxed a bit, relishing in the ability to feel the baby's movements, until the gestational diabetes screening at 28 weeks.  I had developed gestational diabetes.  God did not intend to let me get through this pregnancy without learning to trust Him.  I never did learn, but I certainly did a lot of praying and there is a reason our son is named after Padre Pio who said, "Pray, hope, and don't worry.  Worry is useless."  I was a champion at keeping the gd under control and was starting to gain confidence. Every once in awhile I even allowed myself to imagine I might, just might, be able to hold and love this baby on the outside of the womb.  I allowed the slightest hints of joy to consume my soul for very brief moments.  I couldn't allow these feelings for more than just moments, because my heart was so raw and vulnerable that I didn't think it could handle being shattered to pieces again.  It helped if I thought of holding this baby as something that might not happen instead of something would definitely be happening.

     A few weeks before my scheduled c-section the movements decreased.  I had a feeling something was wrong.  I had a feeling, but this meant nothing.  After all, I had a feeling something was wrong the ENTIRE pregnancy.  I told myself I wasn't going to humiliate myself again by asking them to make sure everything was okay, and I didn't.  I worried, I prayed, and the weeks passed.  It was a Saturday night when I was awakened by the itching.  I scratched and scratched and then fell back to sleep.  The next day we went to Mass and to a brunch for religious ed. teachers.  I had forgotten about the middle of the night itching.  It was gone.  In the light of the day all was well, but when I went to bed that night it returned with a vengeance.  I couldn't get to sleep and I was scratching myself so hard I woke my husband up.  He asked what I was doing and all I could say was, "I'm itchy!"  After awhile I wondered if it was related to the gestational diabetes because it was only my hands and feet.  I went downstairs to ask my buddy, Google.  I ran a search for icthy hands and feet during pregnancy, fully expecting to see something horrible about high blood sugars pop up.  Instead I found a page dedicated to helping women who suffer from something called cholestasis of pregnancy.  I scanned the symptoms and had them all.  My level of panic rose sharply when I read about the dangers of stillbirth.  I had a c-section scheduled for Thursday of that week and had my pre-op appointment scheduled in the morning so I resolved to ask my doctor about it at the appointment.

     In the morning the itching was gone.  I began to wonder if maybe I WAS crazy.  I went to my pre-op appointment and shared my concerns with my doctor.  God bless him.  He knew how paranoid I had been the entire pregnancy.  He knew intimately, because he was the saint who stayed with me for hours and hours of induced labor AFTER his shift was over to help me deliver my dead baby.  He knew.  He knew, and he chuckled and assured me this had NOTHING to do with the pregnancy.  "Get some creams," he said.  I was devastated.  I was convinced that this time, I was right and my baby truly WAS in danger.  I went home and when my husband came home for lunch I told him what had happened.  This time he was convinced too, so he called the doctor and explained that he thought it could be cholestasis.  It takes a humble doctor to listen to a patient when he thinks they are off.  I was blessed to have a humble doctor and a husband who had the courage to stand up for his baby.  The doctor said I could go the hospital and get tested if it would make me feel better.

     I went to the hospital around 1;00.  The nurses mocked me.  "So, you're itchy, huh," they chuckled.  Clearly they had been warned about my insane paranoia.  They set me up in a bed and drew my blood.  I watched the hands of the clock move on the wall and wondered if I really was crazy.  My question was answered when they returned to the room, no longer looking like jokers.  "Your liver function tests came back with levels that are a little high," they said.  "We're going to need to start prepping you for surgery."  I found out in my next pregnancy that by "a little high" what they really meant was "normal is under 50 and yours are over 500."  I was frightened and relieved all at the same time.  He really was in danger, but now we were in the hospital.  He was being monitored.  I could almost breathe a sigh of relief.  As it turned out our baby was not born until after 8 that night, because I had eaten lunch, but he was eventually born and I held him, and I am still thankful to be holding him to this day.  My doctor shook his head and said he was sorry.  It wasn't even on his radar because it was not usual for it to present in a woman after 3 pregnancies without it.  Just as all the information read, the itching was gone within a few days and my liver function returned to normal.

ICP Baby #2

     There is up to a 90% chance of a woman experiencing ICP in future pregnancies after having had it once.  I knew this so I was on the lookout when I got pregnant again.  This time I felt the tiniest bit of tingling in my fingers around 32 weeks.  I told the doctor (not the one from above) at my check up and she assured me that it was probably nothing, shrugged her shoulders, and said, "Every pregnancy is different."  I went home and cried.  Especially when the days passed and the tingle transformed to the familiar itch.  I called in and requested blood work and was denied.  I tried again and this time the doctor on call said yes.
     I was officially diagnosed at 34 weeks.  This time the itching quickly moved from just my hands and feet to my entire body.  This is the pregnancy that left me with more than just c-section scars.  Scratching doesn't stop the itch, but you cannot stop scratching.  They put me on URSO  and set up weekly non-stress tests for the baby.   My levels were being monitored and I knew we were doing all that could be done.  This brought some peace, but still each passing day I wondered if I would wake up to a silent and still womb.  It is horrifying to know that your body is not a safe environment for your baby, and the chance of your body potentially killing your baby increases daily.  The doctor who was now monitoring me made it clear that she thought I wanted to deliver to provide myself with some relief, and she held out on changing my delivery date from 39 weeks to 37 weeks until the very end.  This was absolutely the worst part of ICP for me.  I didn't care about the itching.  I couldn't imagine how I would ever forgive myself, or her, if I didn't speak up and demand a 37 week delivery and my baby died waiting for her 39 week mark.  I didn't want my levels to rise, but I was almost thankful when they continued to do so, because she was forced to admit that this baby needed to be delivered at 37 weeks, and he was.  He was delivered.  He was healthy.  His lungs were mature.  He had made it. The itching stopped and my liver function returned to normal.

     I don't know if I will ever be blessed with another pregnancy again, but I do know that if I am I will be more confident and assertive in terms of the care that my baby receives.  I have two wild and crazy boys that are here with me today, and there is no guarantee that they would be here if it weren't for my husband and I pushing and risking humiliation in questioning my doctors.  If you have symptoms that worry you, please don't second guess yourself.  Push until you get the answers you and your baby need to find peace.  It could be nothing.  Or, it could be a rare condition you have never heard of that is a real danger to your baby.  It's always better to ask and know that you have done all you can to ensure your baby's safety.

My absolute favorite ICP website , which happens to be the website I stumbled upon on that itchy night so long ago!

No comments:

Post a Comment