Cholestasis in Pregnancy: Let's Talk About This

I'm writing this post exactly 16 months from the birth of Claire, my Cholestasis baby. During the last few weeks of my pregnancy with her, starting at about 32 weeks, I came down with an intense and incredibly maddening itch all over my body.

I visited my doctor and they wrote it off as normal to itch. I'd been pregnant 3x before, so I wasn't convinced. I advocated for a blood test and my bile acid levels were off the charts. SOUND THE ALARMS.

Apparently 1 in every 1,000 pregnancies are affected by this disruption of normal bile flow in the gallbladder. Basically, your body stops processing bile acids as it should and there is a build up that eventually leaks into the bloodstream. Cholestatis in pregnancy has no cure, but drugs can help to alleviate some of the pain and lower dangerous bile acid levels. The only real solution to the problem is giving birth.

I tried topical solutions, but the problem was that I was itching on the inside. I was unable to relieve the itching with anything other than showering. It seemed the hot water hitting my skin would briefly relieve the feeling of wanting to claw my skin off. It wasn't uncommon for me to be showering 5 times a day, three of those being between the hours of midnight and 7 a.m. I never slept because I was itching so badly that I could get no rest.

It was terrifying and something I'm quite concerned about for Claire, as it's a hereditary issue. Of my full three pregnancies, she was the only one that I developed these symptoms with, thank goodness. But, that makes me even more concerned for her if she makes the decision to try for children of her own (if she wants).

In documenting this, I want others who may find my blog through Google to know that this is very serious. There are support groups on Facebook and that's wonderful. There are websites to find that might bring you comfort, but never forget to advocate for yourself. This is a matter of life and death of your child. I don't mean to scare anyone, especially pregnant women, but I don't want anyone to take this lightly and assume that waking up itching all night for weeks is normal. It's simply not.

Claire would not be here today if I had not been so adamant about getting the full panel of bile acids + liver function panel of bloodwork done on a regular basis to prove that there was something really wrong. I even walked in on a Saturday while my OB office was closed to beg the nurse to get me a bloodwork request written.

Cholestasis can cause fetal distress (Claire), preterm labor, meconium in the fluid (Claire) and stillbirth. Having already had a stillbirth of my own three years prior due to an entirely different issue, it was imperative that I was advocating for those blood tests every other day (as the results take up to a week to process) and bile acids levels are constantly changing. Don't let the doctors tell you that's not true. They change.

Things That I HIGHLY SUGGEST be Done if You Develop Cholestasis in Pregnancy (From One Mama to Another):

- Get an immediate appointment with your OB if itching starts (hands and feet are often first) or you notice particularly dark urine, jaundice and/or light colored bowel movements. These are textbook signs. I had 2/4 symptoms.
- Demand (nicely) for a full liver panel + bile acids blood test ASAP. Like every other day. Not one or the other. Both.
- Beg for them to put you on "Urso", "Ursodiol" (Ursodeoxycholic Acid). Doses can vary, but my bile acids were 132 (!) at first diagnosis and I was on larger doses of the drug. It did an excellent job of lowering my bile acids to 1/3 of that.
- Extremely reduce your your fat intake and increase your Vitamin K. Neither of these are proven, but I was willing to try whatever it took to decrease the itching and save my daughter's life. I literally cut out almost every single fat from my diet and ate a strictly vegan diet of mostly fruits and vegetables with tons of spinach for Vitamin K. Less bile, easier job for your liver.
- Request frequent non-stress tests. I was going every other day and twice on the weekends.
- Perform kick counts multiple times daily after 28 weeks. There are apps that make this easy and mindless so you can still enjoy watching TV at the same time. This should be done in all pregnancies.
- Get a doppler. I bought a $50 one that was the saving grace of many anxiety-filled days. Not everyone agrees with this as it could bring about more stress if you can't find the heartbeat, but I became a pro at finding the heartbeat from my second son's pregnancy.
- Induce by 37 weeks. I had an emergency c-section at 36w0d while being monitored in the hospital. I was to be induced for normal birth just hours later. It was completely unexpected, but my OB (the one who initially was like, nah, you don't have Cholestasis... it's not common) told me after the fact that my daughter's heart decelerations were downright scary and she would not be alive today if she hadn't been taken via c-section immediately.

I'd be that mom all over again to ensure I'd get to see this one grow.

I blogged about my concerns, diagnosis, doctor visits, and birth of my daughter... or "itchy baby" as many of those Cholestasis support groups like to refer to them as.

Diagnosis
Updates I
Updates II
Updates III
Updates IV
Unexpected Delivery
Full Birth Story

Disclaimer: I am not a doctor or a nurse. I'm just a fierce mama that has been wanting to write this to support other Cholestasis moms for a long time. These are my experiences and while I highly encourage going overboard with care (because what's more important than a living child?), consulting your doctor and finding a damn good one is also quite important. Each person is different, but you don't know where you will end up on the statistic end. Cover all your bases.

If you've had Cholestasis in pregnancy, I'd love for you to share your experiences, advice or link to your story in the comments for anyone who may be visiting that can benefit. There's not much research about this condition; let's change that!

*Joanna, if you're reading this, please comment or email me! I've had you in my email for 16 months but had no contact info to get your input on this post for Cholestasis awareness.

An Unexpected Delivery

(Disclosure: Husband as ghost writer, so please excuse the lack of style and creativity.)

Last night, after deciding to take an Ambien at the suggestion of her nurse, Brandy was fast asleep on monitors when she was suddenly awoken at 3:40 am by five nurses. Apparently Claire had shown heart tone decelerations over the past 6 minutes, and the nurses immediately started inserting IVs, checking the baby, and had Brandy get on her hands and knees to try to get the baby away from the cord. Claire stabilized at this point, and they did an ultrasound. The doctor then came in, checked her monitor readings, and said if this deceleration occurred again that they would do an emergency c-section. The doctor laid Brandy back down, and started another ultrasound... at which point Claire had another deceleration.

They immediately started prepping Brandy for the c-section. Brandy called me at 4:08 am (which unfortunately did not wake me), put under general anesthesia, and Claire was delivered at 4:17 am apparently kicking and screaming. There was meconium in the amniotic fluid, which further validated that she had indeed been under distress. A nurse was nice enough to keep calling me and get through a few minutes after the c-section had occurred. (An amazing friend was nice enough to rush over to our house to take over babysitting Benjamin, and I was able to get to the hospital before Brandy was awake. We also have another friend watching Benjamin ALL day today before his grandparents arrive... so a HUGE thank you there as well.)

Claire weighed in at 6lbs 1oz (not bad for a baby just a few hours into her 36th week), is 18.5 inches long, has blonde hair, and a dimple on her chin (and we are trying to figure out what side of the family that came from). She is now stable in the NICU (on oxygen, not unexpected, and antibiotics as a precaution given meconium in the fluid) and appears to be doing well. (Note: The NICU has undergone a major upgrade since Benjamin was here, and now babies get their own really nice private rooms.)

Brandy is extremely tired, but ultimately relieved... and looking to catch up on a bit of sleep if possible. Between all the drugs and lack of sleep, she was not in a condition to write this blog post... but wanted to get this update out to her many amazing friends and family members who she knows are anxious for an update.

Here are a few photos of our beautiful addition, and her amazing mother:

On behalf of myself, Brandy, Benjamin, and Claire... thank you all for your countless thoughts, prayers, support, and love.

Updates From Labor & Delivery

Well, I'm back. Again. For the last time. I'm hooked up to monitors for Claire's heartbeat and contractions. No Cervidil. No IV. No Pitocin. Just monitors. I'm basically here for an overnight NST. At 6 a.m. tomorrow morning, I'll be given Pitcoin (which I had with Benjamin). Elliot will come about two hours later and be with me for the duration. They've already offered me an Ambien so I'll sleep before it all begins. It's weird being here alone, but I know it's really uneventful and quite uncomfortable for Elliot to be here. And honestly, I want Benjamin to have normalcy tonight with Dad at home before his world is given a spin.

Both of the weekend NSTs went great. She moved like a champ (go figure!) and I got 4 hours of monitoring to calm my nerves a bit. I still performed plenty of kick counts at home, but those NSTs were worth whatever they end up charging us.

I've been scurrying to get things ready for Benjamin, my parents, and my friend Danielle who will take over tomorrow until my parents arrive late Tuesday. The teacher in me got right to work on my "sub" notes, complete with addresses and phone numbers of places we often go with Benjamin. The fridge is stocked, the pantry was already stocked, and I cooked/baked things that my son might actually eat 4 bites of before giving up. I'm so thankful we have such good friends willing to fill in while we're not able and that my parents could make the trip out to spend a week with Benjamin.

We're hoping our family is not separated for over a week, but we have to be realistic about things. I'm being induced at exactly 36 weeks. That's considered pre-term. Which means Claire will be born a preemie. Not a super small one (hoping for 6lbs! Though, B was 7lb.6oz. and still earned himself 4 days in the NICU at just barely term), but premature nonetheless. Which means... we're sort of setting ourselves up for a NICU stay. It would be amazing if she did not need NICU time, but we just want her alive.

My mind and heart have been all over the place. Nervous. Anxious. Frustrated. Excited.

I'm nervous about being away from Benjamin. I already miss him and it hasn't even been 3 hours since I got hugs and kisses from him last. I'm nervous about choosing to induce our daughter this early. But, I'm more nervous about leaving her in with the uncertainty of Cholestasis that can strike at any time without much medical understanding. I'm nervous about another NICU stay. I'm nervous she will show distress. I'm nervous about the delivery and if that will go well and safely. I'm nervous about seeing her struggle. There are just so many uncertainties.

I'm anxious. We have gone back and forth about whether this is the right decision to induce. This condition is rare. And risky. Most people have happy and healthy inductions with this condition. But most is not good enough for us. The itching, even with 1200mg of the Ursodiol drug in me each day tells me that my levels are fluctuating and uncertain. That while she's in there each minute, she's growing and maturing as she should, but could also being exposed to something we're uncertain about with consequences I'm not willing to gamble.

I'm frustrated we are going through another strange induction. It's frustrating knowing that we didn't get to make it to 38 weeks and have a normal, happy induction with our daughter in mother-baby and going home 2 days later. Yes, it could happen, but I doubt it. I'm frustrated that I've been pregnant 4 times and none of them ended in the simple, happy, fairytale ending we imagined. Even if she doesn't have a NICU stay, this end is not something I desired for her.

I'm excited about having a living daughter. I'm excited Benjamin will likely have a little sister and grow up with someone else to interact with. I'm excited for our family to welcome another grandchild and niece. I'm excited I won't ever be pregnant again and this condition will go away!

Here we are again... updates to come tomorrow! Thanks for all the emails and comments of support. We appreciate them all.

The Saga Continues...

I was almost admitted tonight. My OB and the fab MFM were chatting FOUR times on the phone about me during my NST visit.

My appt. was at 2:30 and I just got home at 5:20 (but am just publishing this now because I have a demanding toddler whom I'm so freaking thankful for). I saw both the OB and drove to the hospital (next door), valeted my car and saw the MFM. I had three ultrasounds. Not exactly a simple NST.

First, there is some good news. Let's start with: SHE IS ALIVE. Also, my bile acid levels have lowered considerably (but are still considered high) to 55. From 132 to 55? I think the drug and my diet are both magic. I shall continue all of those until delivery. My liver panel was elevated but not with alarming numbers. My bilirubin came back in the red, but also mild.

Now here's the play-by-play:

On the way to the OB, she was moving decent. I was happy, but knew once they hooked up that stupid machine, it would lull her to sleep. And it did. She seriously moved like once in 30 minutes. I had juice and a lollipop and hoped that would make things happen. She ended up having 3-4 great accelerations in 10 minutes following. Not the best, but she's never been the best.

My OB did the Strep B and told me she wants me admitted Monday night and to deliver me Tuesday now at exactly 36w. Then she checked me to see if I was dilated and could not feel the baby at all. Her positioning was odd and she told me to get dressed and meet her in for an ultrasound.

Ultrasound time (#1) and she is still head-down, but not engaged. Fluid looked great and she was concerned about the cord blood flow because of how she was positioned in relation to the cord. Said she wanted to have the MFM ultrasound me and told me to sit tight.

Various calls with the MFM later (to which I heard much of these conversations) and my amazing OB told me that the MFM told her to just find a reason to admit me tonight and deliver because we just seem to be hitting so many issues. But, they couldn't find a clear reason unless there is a cord issue. Fluid is good, she is reactive, my numbers dropped considerably... so it's not good enough reason to induce earlier than 36w.

Before I left for the MFM, my phone kept updating me with scheduled appointments to Labor & Delivery for NSTs. I will be having an NST tomorrow (Saturday) at noon and Sunday at noon. On Monday night, I will be admitted at 6 p.m. to get some rest before my Tuesday induction. I was grateful to hear all of this, but a little nervous about not being admitted for round-the-clock monitoring until she is born. However, with the news that the numbers have improved, I was thankful for at least that.

I headed over to the MFM at this point and had an ultrasound with the technician and then another one when the MFM came in. She showed me cord blood flow and positioning of the cord no where near her head or neck-- near the placenta actually. Yes, there was a lot there, but the blood flow was good.

I'll be monitored every 24-30 hours until she is safely delivered. However she comes, let's just hope she's alive. Like so many of you wise and wonderful people have said, NICU is just a stepping stone. We'll get through this.

While I slept maybe 3 hours last night and will likely not sleep until Monday night when I'm admitted, I'm feeling more confident about the frequent monitoring. Of course I'll be doing kick counts in between these L&D visits, but at least we had some good news.

You Can Handle Anything That Comes With Alive

That's what my friend and fellow babyloss mom, Melissa, has been emailing me over the last couple weeks.

This diagnosis is really throwing me some curveballs. Excuse me for posting exclusively about this scary pregnancy for the duration of it... because it is consuming every crevice of my mind.

My OB personally called me yesterday to tell me the liver function test was not good and my levels there were high, too. She was not surprised and I wasn't either. High bile acids indicate your liver is not working like it should. The bile acids test has not returned yet, but we can only assume it's not looking pretty. I will find out tomorrow at my NST appt.

Now that both overseeing MFMs are on board and clearly see the urgency in my case now, they specifically told my OB that we need to make it to 36 weeks (Tuesday) and then it's go-time.

I'm having this baby next week... if she makes it that long. The clause I never want to add, but reluctantly must. It's all that is going on in my brain right now. She had hiccups three times this morning. Does that mean she is in distress? Is there meconium in the fluid? These thoughts never rest.

My OB said we have a decision to make-- will it be next Wednesday at 36w1d, or next Friday at 36w3d? She also said I could come in for daily NSTs if that is what gets me through. I just might.

Will we have a living child? Hopefully.
Will we have a living child with potential NICU time for either choice? Probably.
Will the 36w3d choice be wiser to avoid NICU time? Likely.
Can we wait that long, knowing we are putting her in danger even longer inside my body? Unlikely.

We both agree that we'd LOVE to wait until 36w3d, but really, we'd love to wait until 40 weeks! That's just not happening. The difference of those two days seems harrowing. Knowing the anxiety that I am currently experiencing, we might just be scraping it to Wednesday. And honestly, if these bile acids come back astronomically higher than my 132 (already over 3x the severe mark), Wednesday isn't going to be a consideration, but a decision made.

On Tuesday at my 35w appointment, I went from an induction date of 37w6d (without Cholestasis) to possibly 37w3d (diagnosed with symptoms) to 36 weeks. These decisions all happened in 24-hours.

We can handle anything that comes with alive. Of course I don't want my daughter to deal with NICU time. But I feel like my body is slowly trying to kill her and I just can't take that chance. If we're lucky enough to see her born alive, we'll handle anything that comes with being alive.

Probably more updates tomorrow after my NST.

Risky Business

We're down to the home stretch at just over 3 weeks before Claire's scheduled arrival. And yet, I'm terrified. Not in the normal babyloss mom kind of way, but something additional.

All was going pretty smug and well (honestly) until the end of my 32nd week.

The amazing husband gave me a hand and foot rub and all I had to complain about was a demanding toddler, lower back and hip pain. Typical pregnant girl problems. The day after that hand/foot rub, I complained they both itched a lot. Chalked it up to cheap lotion or whatever.

Fast forward a few days at my 33w appointment. I mentioned the extreme palm and foot itching to my OB. She also said itching was normal in pregnancy. Listen, I know. It's not my first rodeo. My belly itched like crazy with Andrew and now it doesn't because it's been down that road a few times. But this hand and foot itching? It seemed... abnormal. My urine was also getting progressively darker, despite the insane amounts of water I have been drinking to hopefully cleanse this away. It wasn't dehydration. I can't possibly be drinking more water. And I was spending 3-4 hours up in the middle of the night itching my skin to scabs. The only temporary relief was showering and I have been taking about 3-4 each day... mostly in the middle of the night when the itching was at its worst.

Two days later, I called back to ask if I could be tested for Cholestasis. It's a condition in which your liver does not process bile acids properly and could possibly leach these acids into your bloodstream which are toxic at high levels for the baby. It's a simple blood test that takes forever to get back. Seven days. That's a full-on eternity when you're in late pregnancy. It's also rare. When I went in for the blood test, neither of the ladies administering had ever done one or seen that test. Oh, to be in the 1% again. It's getting old.

At my non-stress test yesterday (going 2x/weekly), Claire was sleeping and performed crappy (to my standards since I've been through plenty of these) but the OB wasn't worried because there were a few good accels. Then she measured my belly and told me I was measuring 2.5 weeks behind. What? I just saw my regular OB on Tuesday and she mentioned no such thing with the same measuring device. I suppose I can chalk that up to being subjective, but it wasn't the best news to hear after the NST was just marginal. Add a growth ultrasound to my fluid check ultrasound on Tuesday.

Then she told me my levels were in. My bile acids as of 12/27 were 132. That was eight days ago and since I suspected the itching was not just a no big deal sort of thing, I took matters into my own hands and changed my diet. I'm eating very low fat and just started a hot water and lemon juice cleanse each morning. I've upped my vegetable and Vitamin K intake and I'm living on hope. When I tested, I had just eaten pizza the night before and was not on any sort of diet before then. Perhaps, perhaps, that could have contributed to such high numbers. The idea is that if I lower my fat, there will be fewer bile acids my liver has to process and fewer to enter the bloodstream. We'll see if my logic is helpful.

If you do any kind of research (in medical journals or even Google...), you'll note that bile acid levels of 132 are high. Anything above 40 is high and risky. As in, risk of meconium in fluid, stained placenta and stillbirth. Yep, stillbirth. Lucky ol' me gets to deal with that fear again in another form. Yet, my OB, another practice OB and the coordinating MFM I saw all through Benjamin's pregnancy don't seem to be worried. In fact, they've told me that they've seen elevated levels many times before and none of those cases have ever lead to a demise. Ah, see that's where I lose my mind. Because you've never seen one, it doesn't mean I can't be your first case. And to have already lost a baby and have everyone scratching their heads after as to why? Not exactly the game I want to play.

The one silver lining is that I was prescribed Ursodiol, which is meant to help break up those bile acids and hopefully lower that number to a more manageable and less risky territory. But there are no guarantees. I took my first dose about an hour ago and will take them 3x/daily until I deliver. Of course the risk of stillbirth increases exponentially after 37 weeks. And those bile acids can spike at any time with no way of knowing because the blood test takes a week to come back!

In the meantime, I will be hopefully going in for another blood test to see if the diet (and few doses of Ursodiol) are working. It will take another week for those results and put me just under 36 weeks. I just might lose my mind in that week. If you call, I probably won't answer (like I haven't been anyway).

This baby would live if delivered today. It terrifies me to play Russian Roulette again, despite knowing she needs more time for maturity, growth, and lung development. This is the last time I can do this. It's simply too hard.

Feel free to comment with success stories. You know, if you know someone as unlucky as me who has had just about all the issues under the sun in pregnancy.