Goodness, I’m not sure where to begin… the past 48 hours have been an emotional blur.
To be brief: Wednesday I was diagnosed with a rare liver disorder called Intrahepatic Cholestasis of Pregnancy (ICP).
Risks when ICP is left untreated:
- Pre-term labor/delivery
- Fetal Distress
- Meconium Passage
- Respiratory distress syndrome (RDS)
- Failure to establish breathing (sometimes called fetal asphyxia)
- Maternal hemorrhage
- Stillbirth (Intrauterine Fetal Demise/IUFD)
Intrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder of pregnancy in which bile flow is impaired within the liver itself. This leads to elevated bile acids in the blood, and frequently elevated liver functions as well. Elevated bile acids have been shown to pose a risk to the unborn baby. ICP can occur at any point in pregnancy. It most often occurs in the third trimester, but has been seen as early as six weeks pregnant. -ICPcare.org
The Back Story: I started following an adorable pregnant yoga teacher back in 2014 on Instagram (@ameliakyoga)- I was fascinated by her full belly in all these awesome yoga poses and aspired to be flexible like her when I would be pregnant one day. But to my shock this active yogi gave birth July 2014 and her son, Landon, only lived 4 days on this earth- totally unexplainable, an absolute devastating mystery. Fast forward, to 2015, she found out she was pregnant with her rainbow baby, Lily. And then she realized at 37 weeks that she was having similar symptoms (like itchiness on bottom of feet and palms, right upper-quadrant pain, and dark urine) to when she was pregnant with Landon. She researched more and confirmed her suspicions of ICP. She followed her gut and urged the doctors to deliver her baby- she convinced them and now she has a healthy little miracle and an explanation to what happened to her perfect little boy…I-C-P.
After reading her story in December, a little flag went up as I had experienced faint itchiness in my feet and hands in the first trimester. Then it persisted intermittenly for weeks to come. So finally, I spoke up and asked my OBGYN to order a total-fractionated bile acid (TBA) blood test along with the liver function (LFT) and other tests she was ordering. She said she had never ordered the TBA test before but there was no harm in ordering it so she wrote me a script. The TBA took a couple weeks to get back but in the meantime my AST (53) and ALT (59) liver enzymes and Lipase (78) came back elevated so she sent me for a gallbladder/liver ultrasound.
The ultrasound came back normal so that removed a lot of fear of other disorders and I met with the doctor this past Monday and she wasn’t concerned as blood tests can be all over the place during pregnancy. We hadn’t gotten the TBA results yet but she wasn’t concerned so I just brushed it off. Then Tuesday, I finished with my clients and received a voicemail from her at 7:30pm (never a good sign) saying that I was right in my suspicions of the TBA and my levels were elevated (26.4). I called her cell phone back and she admitted that she didn’t have much experience with ICP in her 25+ years as an OBGYN. I texted her a practitioners pamphlet from ICPcare.org with a lot of the latest research and best practices. A lot of doctors don’t have experience with ICP as it is so rare (1:1,000). It is so important to educate yourself and others, and follow your gut!
I will be put on ursodiol, hopefully by the end of the day. And I will be meeting with a Maternal and Fetal Medicine doctor hopefully beginning next week to make a plan of action as consistent blood tests, NSTs and BPPs are recommended. Also, I will most like be birthing Little Bean between 36-37 weeks. This definitely has been one crazy and unexpected journey to parenthood and it isn’t over yet! We know our Lord is Sovereign- he “happened” to lead me to Amelia’s page two years ago knowing she would be my only resource of knowledge of ICP; there’s a reason and a bigger purpose. Allan prays and reads Psalm 91 over us. Our baby girl will be okay, she is (and I am) in His almighty hands.
Please join me in praying:
1. Little Bean will remain unaffected (she’s been reassuring me with lots of movement this week- thankfully).
2. She will initiate birth on her own so we won’t have to go through induction or medical intervention.
3. That someone’s life will be saved through this awareness.
4. Doctor’s wisdom for the best care for us girls.
Please make others aware, visit ICPcare.org- you never know how many lives you can save… And please if you have any questions, don’t hesitate to ask!