Shared Stories


Shared Stories

Shared Stories of Intrahepatic Cholestasis of Pregnancy (ICP)
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Larisa's Prematurity Awareness Day ICP story

Ameila Barnes, Canada

On July 8, 2014 I gave birth to our son, Landon James Barnes. After about 12 hours of natural labour I was 8 centimeters dilated. Suddenly his heartbeat dropped dangerously low, and I was rushed into the operating room for an emergency c-section. By the time they got him out it was too late. His heart had stopped beating. It took over 15 minutes to resuscitate him and by that time his brain was severely damaged. We were given no answers, no reason why. “These things just happen sometimes”, we were told.

Four days later, my husband and I held our baby son as his spirit left his beautiful little 8lbs 6 oz and 21″ body. With his silky soft skin pressed against my bare chest, I could feel each raspy breath, each faint heartbeat as they slowed and then stopped completely. What should have been the most joyful point in my life became the most sorrowful. My heart was ripped right open in a way I’d never imagined possible. I didn’t think I’d survive the pain.

And yet I did. My family and friends, my yoga, and the community of support that grew around my Instagram account were what held me up and helped me move forward. Eight months after Landon’s death, we became pregnant with his little sister, Lily Orysia. Overjoyed, yet still healing emotionally, I enjoyed a perfectly healthy and uneventful pregnancy – until 37 weeks.
It was then that I noticed an itch all over my body, the same kind of itchiness that I had starting at 37 weeks during my pregnancy with Landon. I knew something was wrong. After researching my symptoms online and finding icpcare.org, I was certain I had Intrahepatic Cholestasis of Pregnancy (ICP).
Test results to confirm this diagnosis would take at least a couple weeks to come back, but I trusted my instincts that told me she needed to be born right away and opted for a c-section the next day. Lily was born healthy and strong, 6lbs 12oz and 19″. My heart nearly exploded with joy when her squishy little body was brought right up to my face. It was truly the most beautiful, healing experience.
When the test results came back they showed that I did have ICP, and since it’s a disease that usually recurs with each pregnancy this was most likely the cause of Landon’s death. In a way it was a relief – at least now we know for certain, we have an “answer” for what happened to Landon. I did what I thought was necessary to keep Lily safe, and I was right. Yet is hard to make peace with the fact that Landon’s death could have been prevented; had I known what I know now about ICP. And as positive as Lily’s birth experience was, there’s still a part of me that is disappointed that I never got to experience natural childbirth as I so desperately hoped I would.

As I write this, I keep looking down at Lily curled up snugly on my chest. I still can’t believe how perfect she is, how beautiful she is, what a miracle she is. The days and months leading up to her birth brought a storm of anxiety, fear, doubt and regret, but her safe arrival has been a blessing, a light in the dark like no other. They say babies after loss are “rainbows” – I couldn’t agree more.
(To read more of our story please read the book Landon’s Legacy, the Power of a Brief Life or learn about the retreat created in Landon’s honour, search the hashtags #LandonsLegacy and #LandonsLegacyRetreat on Instagram, or visit www.landonslegacyretreat.com.)

 

Amanda Crowe Shared story

Amanda Crowe, Michigan

My first pregnancy I didn’t know what was “normal”. My baby was very inactive, but I didn’t know any different. By 25 weeks along I reached out on Facebook complaining that my hands and feet were itching, a burning itch, and it seemed very off to me. The itch couldn’t have been terribly intense because I allowed myself to be talked out of worrying by multiple friends and family telling me “some itching is normal”. In fact, I let myself believe that so much I completely forgot about it until a Facebook time hop three years later. That time hop frightened me terribly having confirmation of what I already knew and of what could have gone wrong! My first pregnancy, just like my second was an Intrahepatic Cholestasis of Pregnancy; this one, however went undiagnosed and untreated because the itch was mild and I let people tell me to ignore the itch. Please, don’t ignore the itch!! A few weeks later, 33 weeks, I went in for my routine checkup and was almost sent directly to the hospital for blood pressure. I was asked about baby’s movements and I told them it was the same as ever – which was true, I just didn’t realize at the time that just because it was the same didn’t mean it was much, much too little! I was sent home on bed rest with frequent blood pressure checks. I started twice weekly being checked for preeclampsia both in blood and urine, I passed every test with flying colors. Not only did I not have preeclampsia I was also nowhere near developing it. My doctor was puzzled. My body was slowly going into a deeper level of shock each day and there was no obvious answer. By that time, I had forgotten the itchy hands and feet and anytime it flared back up I assumed it was blood pressure related. In my 34th week I was getting periods of intense swelling of my hands. They were hot, itchy and balloon like. I would also get periods of vertigo and feeling like I couldn’t focus my eyes correctly. Still absolutely clear of preeclampsia. Still with zero answer to why my body was panicking. At my next appointment I was 35 weeks, my OB did an NST and realized how little the baby actually moved. I was quickly moved from the NST to an ultrasound. In the ultrasound my baby wasn’t moving. We could see his heartbeat and practice breaths on occasion but other than that the baby just floated inside me. I did a shot of juice, cold water, moved the table at an angle, nothing moved the baby. Eventually the ultrasound technician started shaking my belly and we could see him respond just by flicking his hand. The office was very good at staying calm, I was terrified but left feeling ok about it. Within a few hours my OB called to tell me we needed to induce as soon as possible which would be that weekend at 36 weeks. The ultrasound had shown that my placenta was aged past what is expected of a 42-week pregnancy. Still no reasoning for it, but it was happening and it was happening very ferociously. When I went for my induction the nurse and doctor who started the medication made several comments that I must have wanted a baby in the NICU for willingly being induced so early. Since I had no actual diagnosis the ultrasound was the only reason to be inducing. It was a hard labor but late the next night my son was born! The delivery room had NICU nurses waiting to take him but amazingly he was strong and healthy! IN fact, he was dubbed the smallest but loudest baby at the hospital during our three-day stay! A few hours later, early in the morning our pediatrician came to give his first exam on the new tiny baby. He started looking him over, focusing on his hands, his fingernails, strange spots I wouldn’t think they would put much effort into detailing. Then he asked me what exactly was going on for causing the induction. I told him about the blood pressure and ultrasound and lack of movement. I’ll never forget what he told me next. “This baby only had a few days left to survive in you, he certainly would not have made it through the week.”. I was recovering very hard and for some reason I never asked him to elaborate, I was just glad he said the induction was completely correct and necessary. We moved on, we had a rough few beginning weeks as most parents with early babies do but life progressed. Six months later I was pregnant with my second. Again around 25 weeks I was itchy, this time it was my wrists and face. The face is hard place to ignore constant itching! The diagnosis for that pregnancy is a story in its own but for this story the important part is I was diagnosed and started treatment by 28 weeks with ICP. In the diagnosing phase I had to go over a detailed medical history which is when I realized that years before being pregnant I found out I couldn’t take birth control due to my liver enzymes being raised and making me very sick. It was also in that phase that I had to recount my first pregnancy quite a bit and that’s when it became very apparent I never tested positive for preeclampsia because I didn’t have it, I had Intrahepatic Cholestasis of Pregnancy. It went untreated for a very long time because I never mentioned the itching and by the time I would have thought more about it I had other symptoms that I could blame it on. My bile acids were never tested. My liver enzymes never elevated in my second pregnancy either so bile acids were the only test that would have shown my liver being affected, but they are not routine tests – in fact for my second pregnancy the office had to have the directions pulled up on the computer for how to store and file my blood as they were drawing it because it is so uncommon to have run. The moral of this long story is to never ignore the itch! I came within days of losing my first son because I allowed myself to ignore the itch, I never got the lifesaving prescription of URSO and I was never properly monitored for a baby in an ICP womb. I now encourage any itchy pregnant woman to get her bile acids checked, if it comes back at a one there’s no harm caused and if it comes back elevated you just may save your baby’s life. Thank you ICP Care for saving my 2nd born son’s life with all of the dedication!
 

 

Raven Shared story

Raven Honza, Texas

When the word “Pregnant” showed up on my ClearBlue pregnancy test one afternoon in January, I just about flipped my lid. We hadn’t planned for this, my husband and I both agreed we weren’t ready, and the natural family planning had been working very well for the past 4 months since we ditched the condoms. Well, as the saying goes, ‘Life finds a way’!
I told my mom the following evening. Sent a picture of the tests to my Grannie and Granddad the next morning. We told his parents, siblings, aunts, uncles, and cousins on our anniversary weekend a few weeks later – at a little Italian restaurant. We gave his mom a present with a onesie and pacifiers in it. I texted all the other important friends later that evening and the rest is history.
First doctor’s appointment we got to see the peanut on an ultrasound to confirm and my due date was set at September 18th, 2014.
At my next appointment they drew a ton of labs, and I got another ultrasound to confirm everything was still healthy and growing. Scheduled my 12-weeks testing & 16wk appointment.
12wk testing was a complete ultrasound – got a gender guess for a boy based on the positioning of the tubercle. Everything looked healthy – all the labs from the fingerstick were normal & there was no sign of a neural tube defect.
At 20 weeks we got to learn that our baby was for sure a boy! We had Dairy Queen on the way home and set our Gender Reveal Party for the following weekend. We gathered the family together and sprayed blue silly string from unmarked cans. Everyone was shocked, as only girls really run in my family – so I got to break the curse!
All of my 24-week AFP’s were all cleared, and even my chronic hypertension was completely under control for the first time in the last 5 years. I thought we were going to be smooth sailing for the remainder of the pregnancy as well. I was working full-time at a desk job and had been under little to no stress the entire pregnancy. Everything was perfect.
I guess you could say that I had a completely normal pregnancy…up until the beginning of my third trimester.
Just around the time I hit 31 weeks in mid-July of 2014, I began to itch. We aren’t talking about the occasional scratch here and there, but instead what felt like I had flea bites or healing sunburn all over my legs/feet from the knees down and my arms/hands from the elbows down. It wasn’t a debilitating itch, but it was definitely noticeable and very irritating at night as I tried to wind down to go to sleep. What was funny about it was that there was no rash or skin discoloration of any kind – so I was baffled. I mentioned it at my next OB appointment, and my doctor seemed to do a double-take. She asked a few questions, before telling me that I needed to come in for fasting labs first thing in the morning – they wanted to draw a liver function panel and bile acid measurement.
So, I got up at 6 the next morning, went in for my labs, before heading to work. My baby shower was that weekend, and I was working a half-day before leaving town. I was told that it would be a 5-7 days for test results to come back, since they had to send the bile acids to Virginia to their special lab, so I would have results sent to me and receive a call with an explanation by the end of the next week.
Sure enough, I received a ping on my MyQuest app on my iPhone six days later. Everything looked good, but as I scrolled down, I noticed that there were a few levels that were abnormal, or ‘out-of-range’. My Albumin levels were low at a 3.4g/dl with a ref. range of 3.6-5.1 g/dL, Alkaline Phosphatase was high at a 141 U/L with a ref. range of 33-115U/L, AST was very high at 69 U/L with a ref. range of 10-30U/L, and my ALT was off the charts at 209U/L with a ref. range of 6-29U/L. The bile acids were 14 umol/L. I had no idea what any of this meant, but the ALT levels scared me a little, so I was on the phone with my OB office that afternoon, requesting a call with an explanation ASAP. I wanted to make sure that my blood pressure stayed under control, so I didn’t want to stew over this for very long – I needed the peace of mind.
I received a call back that afternoon from the triage nurse at the office, stating that she had conferred with another doctor in the practice, and that he said everything looked fine – just watch the blood pressure, since that can elevate liver enzymes if uncontrolled – instructions were to make an appointment to follow up with my doctor at the end of the week. I still felt a little leery of the information, but went on with my day.
At my appointment the following Friday, my doctor entered the room with a very sheepish look on her face – as if she were ready to apologize for something. She stated that the doctor who had given me the information was misinformed – as he had never heard of the condition for which my doctor was testing – he assumed she was testing for pre-eclampsia and HELLP Syndrome. She said that the elevated liver enzymes, in conjunction with my bile acids being slightly elevated as well, were indicative of ICP – Intrahepatic Cholestasis of Pregnancy. The itching is what had tipped her off, as she is one of the only 2 doctors in the practice who recognize this disease for what it is.
She said that she didn’t want to take any chances. She wanted me to spend a night in the hospital with continuous fetal monitoring, and collect a 24-Hour urine sample to rule out pre-eclampsia/HELLP as well. She was also going to refer me to see a Perinatologist once a week in the future.
So, I called my husband on the way home and let him know what was going on. He didn’t get off work until 8:30PM, so I called my Grannie – who would accompany me. I checked into Triage at about 6:30PM, only to be told I should have gone to L&D, who told me I belonged at Ante-Partum. It was a mess… I spent just under 24 hours there, collecting the 24-hr urine sample, having labs drawn, and having baby externally monitored. I was barely cleared to go home the following evening, as my proteins were 5mg/dl below the cut-off, and had an appointment with my Perinatologist the following Friday.
From then onward, I had weekly ultrasounds, as well as non-stress tests twice weekly. I was prescribed 300mg Actigall, which I began taking every 8 hours with food – to control the bile acids. I had labs redrawn every week to check on the liver/bile levels. I was also told I would need to be induced at 37 weeks. The date was set for August 28th to come in and start with Cervadil the night before. I was super nervous.
I had dreamed of the completely normal, drug-free labor and delivery. In the past, my doctor had agreed to allow me to go to 42 weeks if I was healthy. I wanted to labor at home, come in toward the end, and avoid all interventions. Induction at 37 weeks was NOT what I had in mind, and my hopes were marginally shattered.
Everything was moving along without further incident – baby was measuring well, amniotic fluid levels were good, and he was handling the NST’s like a champ. I stopped worrying about it all, until I noticed that I had lost my mucus plug at 35 weeks + 2 days. There was no bloody show, but it was definitely my mucus plug on the bath tissue. My OB didn’t seem concerned, as it is only indicative of the cervix ripening – not necessarily labor being close. My doula, however, said to be on the look-out for labor symptoms or rupture of membranes.
Sure enough, 3 days later (35 weeks +5 days) at 2AM, my water broke.
I had gotten out of bed to use the potty. I felt a sharp pinch above my right hip – but thought it was gas pains. I got ready to stand from my seat on the toilet when I felt a sudden gush of liquid. I knew instantly what had just happened, and looking down to see a toilet bowl filled with pinkish, bloody fluid confirmed my hunch.
I grabbed the box of Ultra-Super pads I kept next to the toilet for this very reason, pulled up my pants, and went to shake my husband awake.
“Honey, you need to wake up. My water just broke.”
He shot out of bed, “What do you need me to do?”
After instructing him to take care of our 1 year old Siberian husky and start packing the car, I ran for the closet and started throwing clothes and toiletries into a duffle. (I did not have a bag packed yet, since I thought we were still at least 2 weeks out from the induction, and over a month from my original due date.) I grabbed my cell phone and called the Triage Line at my OB’s office. The nurse said she would page the doctor on-call. I received a call back within 15 minutes from one of the other OB’s in the practice. She asked me a few questions and told me to head in to L&D through the ER entrance – since the main entrance was closed until 6AM. She said that normally they would let you labor at home, but since I was high-risk and premature, she wanted me monitored to make sure the baby wasn’t in distress (which can apparently be a cause of premature rupture of membranes).
So, with everything packed up, I called my mother (who lives 3 streets over) and my Grannie (who lives 5 hours away) to give them a head’s-up that we were headed to the hospital. I also called my doula to let her know the situation. She said to keep her posted and let her know how progressed I was, and when I started having contractions.
I got to the hospital, checked into L&D. They wanted to take me to a Triage room to check and see if my water had actually broken, but when I turned to follow the nurse, a doctor walked by and said, “Nurse, her pants are wet. Her water has obviously broken. Take her to a Labor Room.”
So they got me set up in Labor Room #8. I declined the hospital gown, as they were starchy and hot, and opted to wear a sports bra and maternity tank and wrap a sheet around my waist. They got me attached to the external fetal monitor, placed a hep-lock (which took them 4 sticks to get a good vein – I still have paresthesia in the back of my hand from this), drew some blood, and told me to hurry up and wait.
Since I had not yet had my Strep-B test, they stared me on the 1st of three bags of Ampicillin, just in case I was positive. They checked my cervix – verified that my waters had broken, and that I was 4cm dilated, 50% effaced, and baby was at -2 station. I was shocked that I had progressed that much, and quickly text my mother, grandmother and doula.
My mother showed up about half an hour later, having called into work to be there. My grandmother was on the road. My doula would be on her way shortly.
I started to really feel the contractions at about 6am. They were not debilitating, but I definitely had to concentrate and breathe through them. My doula arrived about that time, and was geared-up and ready to assist. My husband took a nap on the sofa, and we had a shift-change with the nurses. They started the second bag of Ampicillin, and did another cervical check. I was at 6cm, 75% effaced, and baby was still at -2 station. My doula had me drinking and eating ice chips between contractions, and getting up at least every hour to empty my bladder.
They started the 3rd bag of Ampicillin at 9am – just as my grandmother arrived. The contractions were getting much closer together – about 2 minutes apart, and I really had to concentrate through them, as they lasted nearly a minute each. They did another cervical check and found that I was still at 6cm, but I was 100% effaced and baby was at -1 station. My doula said that now was the time to get out of bed and onto the birthing ball to see if we could bring that baby down.
I spent what had to be at least 2-3 hours on the ball and on the toilet. And at noon, some of the worst contractions started to pummel into me. They were nearly on top of one another, and the line on the monitor was way at the top of the paper – showing crazy intensity. The nurses asked if I wanted another check, but I said “not until I feel pressure”. I was not interested in getting discouraged this late in the game.
By 12:30 I was seriously considering an epidural – which is crazy, since I am staunchly against using pain-medication of any kind – and my mom and doula had to talk me down. My husband was obviously losing his grip a little and my doula had to give him a ‘pep talk’ of sorts to get him back in the game. From then onward, he was there with a cool rag and shoulder massage to help me out. My doula said that this was likely transition, and that we were probably getting very close now. It would probably be too late for pain meds at this point, anyway.
By 12:45, my doula had me standing at the edge of the bed, leaning over and rocking my hips through contractions. After about ten minutes of this, I was struck with the overwhelming urge to bear down and push. All I could manage to say was, “Pressure!” and my body began to bear down on its own, causing me to grunt and pant against it. Then I felt a small gush of fluid with the pressure and I panicked. My doula went running out of the room to find a nurse, and all I could hear was, “She’s bearing down. Can we get a nurse for a cervical check in here?”
5 minutes later, the cute charge nurse that I loved came jogging in and performed the last check, “Honey, you are almost done. You are 100% effaced, baby is down and engaged, and you have only a tiny lip of cervix left. However, I am pretty sure that when you start pushing, it will slip out of the way when baby comes down. I’ll call you 9.75cm. I’ll go get the doc!”
My doula was like, “You did it! We’re there!”
Another nurse came in and disconnected the IV line from the hep-lock, when I started to bear down again. She was like, “Don’t push until the doctor gets here.”
I was like, “Yeah right…I don’t think the baby is paying attention,” and continued as I felt the urges.
Nurse looked down, “Alright then, I can see the head.”
And went scrambling out of the room, yelling for the delivery team. Apparently, most women take a bit longer to get to this point than I did. A flock of nurses flooded the room. I had one watching the contraction machine, one watching the baby’s heart rate, two breaking down the bed for delivery, and one getting the supplies ready. There were two pediatric nurses – one with the nursery, one with the NICU – just in case he needed help breathing after delivery. It was a mad house.
Then the doctor walked in. She wasn’t my doctor (since mine was out of town), but she was one of the OB’s in the practice that I was familiar with. She was already scrubbed up, took her seat at my feet and instructed me how best to push with the contractions. After the first push, she said, “You are pushing great, but you are giving me little pushes. I need big pushes if you want to get this baby out.”
I was exhausted, but that was a motivator. On the next contraction, I gave it literally everything I had. All I could feel was intense pressure and the ‘ring of fire’ most moms speak of. They told me to push through it, so I did. Two pushes later (only three contractions total) Milo David Honza was born at 1:34pm. He weighed 7 pounds even, and was 20 inches long. APGAR was 8/10, then 9/10.
I had a 1st degree tear, which the OB put in two stitches, only because it had torn a blood vessel and she wanted to control the bleeding. I had a couple of other ‘skid burns’ close to the urethra, but there wasn’t anything to stitch-up there. She said it was only because I pushed him out so quickly, not that he had a big head. They hung a bag of Pitocin to control the bleeding and help deliver the placenta, since ICP moms are at a far higher risk for post-partum hemorrhage. Placenta was delivered on its own, in one, complete piece – nothing retained.
He was so quiet when he came out, but his eyes were open and he was alert. I can thank the lack of drug intervention for that. They had to suction him a lot, since he was early and born so quickly that he wasn’t able to clear out his own mucus plugs in his nose and throat on his own. I was able to spend an hour with him and attempt to nurse before they took him to the nursery – husband in tow.
My liver enzymes were still elevated in the 48 hours after delivery, so we had to stay an extra night. They were still elevated upon discharge, but were down to normal at my 2-week check-up. The itching had stopped immediately after birth with no further incidence. My baby, however, was yellow.
Milo struggled with his bilirubin levels all through the first month of his life. We were discharged on Friday with a bilirubin of 8.5, but were back in the NICU by Saturday afternoon with a bilirubin level of 21. We spent 3 days there under a UV light, pushing IV fluids, and nursing around the clock to try to bring them down. We got the levels down to an 11 on Monday and were finally able to go back home.
For the next few weeks, it spiked back up to a 17 at his 2 week appointment, then dropped down to a 16 and 15 at consecutive weekly appointments. I refused to “pump and dump” for 24 hours to drop them rapidly, since the pediatrician said they would slowly come down on their own – calling it “breast milk jaundice”.
My OB said that the it was likely the reason for my late pregnancy blood pressure spikes, the premature rupture of membranes, and likely his fluctuations in bilirubin levels due to prematurity. Milo turned 3 months old on 11/19, and he is doing well. He weighed 10lb 10oz at his last appointment at the end of October, so he’s gaining weight like a champ.
I am very thankful we caught the Intrahepatic Cholestasis of Pregnancy early enough to treat it and that my baby is now completely healthy and happy.
My post-partum lochia (bleeding) lasted 2 weeks at bright red, before tapering to pinkish brown for the 3rd week, and by the 1-month mark, it was back to a yellow discharge – not unlike that during late pregnancy. I got my period back 21 days after delivery – so I wasn’t one of those lucky moms who breastfeeds exclusively & doesn’t get a period until weaning. Darn!
I understand that I have a 60-90% chance of developing ICP again in future pregnancies, as well as with use of any hormonal birth control. So condoms it is, until we decide to continue growing our family!
It saddens me that, out of the 20 doctors in my OB’s practice, only 2 of them were educated about ICP, and that was because they had only completed their residencies in the last 2 years, so it was fresh on their minds with the latest research. It seems that ICP is becoming more widely known, but the process is slow and most women have to self-diagnose before they are able to convince the OB’s they need treatment. I was thankful to have such a thorough OB who knew just what to do, as well as the resources of ItchyMoms!
 

 

andrea shared story

Andrea McConne, Australia

I was in my first trimester with my first baby in 2014. This had already been a stressful time with fertility treatment and a previous miscarriage at 11 weeks, so we were already concerned parents with a long road to travel.
I was experiencing some incredible itchiness of a night time and mentioned it to my fantastic OB at my 12-week appointment. He wasn’t concerned and luckily I hadn’t googled anything!!!! He asked me some routine questions about problematic pregnancies for my mum and sister but I didn’t think anything of the conversation, he did say he would do some additional bloods to rule anything out but he just thought that it was normal stretching skin. Although at this stage the itch was only across my chest and mostly of a night time. We came to realize that he was clearly a very vigilant and well educated in ICP. At 14 weeks I received a phone call from him that I did in fact have ICP with a bile acid of 12, I was placed on URSO straight away and stupidly spent far too much time on Google. Luckily I found the ICP Care Facebook support group and was able to calm my nerves by asking a lot of questions.
After much argument with the private script system in Australia I was able to get URSO for $38 for 3 boxes instead of $140, seeing as I was only 3 1/2 months pregnant and taking 4 bills a day this was a big financial relief. A much appreciated coordinated effort with lots of phone calls made from both my OB and Pharmacist who lost their cools several time with the system that gives permission for private script approval in Australia. I still have boxes of URSO stashed away just in case 😉

I am lucky to say my itch remained bearable yet moved to my stomach and sometimes my hands, although I feel that I never got it as bad as some others. Keeping cool was key for me and lucky I was having a winter baby, I would never chance a pregnancy in an Australian summer if I can help it. I found moo goo creams have some relief and also hydrogel breast pads placed in the fridge also assisted, anything that kept my skin cool allowed me a little more relief and therefore sleep.

The highest my levels ever went were 14 with a few weeks left to deliver, my OB continued to be vigilant and developed a plan we were really happy with, blood tests monthly and fortnightly for bile and liver function, growth scans at every visit, a few CTG’s thrown in towards delivery, growth steroids for Bub and a c section delivery (my choice) at 37 weeks with back up bloods ordered and my placenta sent away for investigations. Our daughter Audrey was born without complication, a good size at 6 pound and without any of the respiratory issues we had prepared ourselves for.
Even with a surprisingly lucky run in with ICP my placenta still showed what was described as ‘black/dead spots’ something that chills me still as I was considered so well ‘controlled’.
My LFT and bile acids had returned to normal by follow up tests at 4 weeks post-delivery.
We were so lucky with our ICP story, I know many are not as lucky as we were and I feel that it was purely the knowledge and experience of our OB who made our journey such a positive experience. We are currently 12 weeks pregnant with number 2 and unfortunately our original OB has now retired but we seem to have found a new OB that will be just as vigilant and has agreed to a similar plan as our previous doctor.
 

 

Christa Shared Story

Christa Jensen, Utah

At about 30 weeks, I began itching and asked my doctor about it. I was itchy everywhere. He told me to avoid hot baths and take benedryl. At 33 weeks, I went to an all you can eat buffet and that night I could not sleep because the itching was so bad. Finally about 3AM, I went online searching for itchy skin during pregnancy. As soon as I read about Intrahepatic Cholestasis of Pregnancy on ICP Care / Itchy Moms I knew that’s what I had.
I called my OBGYN and went in for a blood test. They put me on Ursodeoxycholic Acid and said the results would come back in a few days. They called a few days later and confirmed the diagnosis and my BA level were at 37. I came in for a non-stress test and the baby was not very active and I started having contractions. I was sent home but advised to stay off my feet. That night I went into labor at 35 weeks. I went to labor and delivery and no one had heard of ICP. They gave me a shot to stop labor and sent me home. The next day I went into labor again. I went back to the hospital and finally was admitted. Many hours later Austin was born weighing, 5lbs 11oz. As soon as he was born he stopped breathing. They had to call a “code blue” and call a newborn life flight team to airlift him to another hospital with a high level NICU. He was diagnosed with Respiratory Distress Syndrome; he was put on a ventilator for 5 days. He also had an infection that required antibiotics, and jaundice. For me the itching went away right after giving birth. After 14 days in the NICU and 11 days at a children’s hospital with RSV, my baby is now older and doing great. Although it was the hardest thing I have ever gone through, I am grateful to have the education, and support of such an amazing website.
 

 

Erica Contay shared stories

Erica Conaty, New Hampshire

All I ever wanted was to be a mother, so when I saw those two lines on the pregnancy test I was beyond thrilled. I was so excited for everything to come. Made it through my first trimester with little to no morning sickness and considered myself extremely lucky. When I was 17 weeks we found out our little angel was a boy. Life couldn’t have been any better for us. Two weeks later I noticed I was itching a lot. Didn’t think much of it; pregnancy had dried out my skin so I thought it was normal. It got to the point that I was covered in bruises and scabs from scratching so much. I knew that couldn’t be normal so I called the doctor. My OB immediately drew blood and sent it out for analysis. To this day I am so grateful that she knew what she was doing. She told me not to worry and that everything was probably fine. The day I turned 20 weeks I got the phone call. She told me I had Intrahepatic Cholestasis of Pregnancy (ICP). We made an informational appointment for the following week and she sent over a referral to a Maternal Fetal Medicine doctor. Of course I immediately jumped on my old pal Google. What I was finding was terrifying. I kept reading things like “high risk” and “stillbirth”. My head was spinning. I went from my normal happy pregnancy to this madness. After my appointment with the OB I felt a little better. She explained to me that my liver wasn’t functioning correctly; my bile acids were building up and that’s what was causing my itching. She started me on medication to keep my Bile acids down. I quickly found the ICP care website and joined the support group. After reading many testimonials I realized how truly lucky we were that my OB was right on board and did everything she was supposed to. We call her my sons guardian angel. Through all those testimonials though I couldn’t help but come across those of mothers who had lost their babies to this. My heart did and still does go out to them. I was so worried about my baby. I was told that we would have to induce labor at 37 weeks to reduce the risk of stillbirth. I can’t even explain what goes through your head when you find out something like this. You’re constantly in a state of worry. Will my baby make it? Will 37 weeks be too early for him? Will he need to spend time in a NICU? What did I do to make this happen? All the information, all the doctors none of it could make me feel any better. All I ever wanted was to be a mother and now my own body was jeopardizing the health of my baby. I felt like a failure. On top of all the stress was the constant itching. I spent 17+ weeks wanting to rip my skin off. I couldn’t stop scratching. At my lowest point I broke out my dogs’ metal hair brush and went to town. It feels like fire ants crawling under your skin. Nothing helps the itch, nothing makes it better. It kept me up at night, it made me lose my train of thought during the day. It was unlike anything I’ve ever experienced. People would stare at me weird when I went out because I was covered in scratches and scabs and itching constantly. It was embarrassing and made a bad situation even worse.

At 30 weeks we started a more intense monitoring of the baby. I had biweekly appointments with the Maternal Fetal Medicine specialist to do a growth scan ultrasound and make sure the baby was progressing well. I had weekly non-stress test at my OB to make sure he was moving around enough, I also had a weekly ultra sound at my OB to make sure his lungs were developing and practicing his breathing the way he was supposed to. Between the itching, lack of sleep, and impossible calendar of appointments I decided to take a leave of absence from work. Finally, the day came that I was to be induced. I went into the hospital at 6pm. They started me on a cervix relaxer called cervadil. I was already having small contractions of my own so that kicked them up a few notches. At 11am the next morning they broke my water and started Pitocin. I’m sure I don’t have to explain how painful labor is, but man it hurts. At 5pm when I was only 7cm dilated my body decided it was time to push, as much as I tried I couldn’t stop it. After 2 1/2 hours of pushing my little itch was born. Jace Ezra Caron was 20 inches long and 8lbs 6oz. He was breathing like a champ and needed no extra help what so ever. It was such a relief to finally have my little boy safe and sound in my arms.