Thursday, May 14, 2015

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.

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.


Teresa said... [Reply to comment]

Great post, Brandy!! So glad Claire is here and healthy! You were such a great advocate for her, and hopefully what you've learned can help other Moms. More awareness and research is SO desperately needed!! I think hormones play a huge role in choleostasis, and explains why it worsens later in pregnancy. And why some women who have had it are extra sensitive to hormonal birth control! Definitely still lots of research to be done. Thank you for raising awareness!!

Caroline said... [Reply to comment]

And thank God you advocated so much for yourself. Look at that sweet nugget. I remember sitting up to nurse Mary and seeing your "she's here" email and just crying.

Mama Bear said... [Reply to comment]

Yes to encouraging people to advocate for themselves and their babies! I'm so glad Claire arrived safely!

Laura Jane said... [Reply to comment]

I think this post brought back a little bit of PTSD for me, so I can't even begin to imagine how you felt writing it.

so close, so friggin' close to losing her… But you didn't. She's here, she's lovely and has a gorgeous bald noggin;.

I'm so glad you advocated for her. I'm so, SO glad she's here.