We were so thrilled that the choroid plexus cysts were GONE at our appointment with maternal fetal medicine in January. Daniel and I took a much needed getaway trip to savannah and charleston in March and had a great time exploring two beautiful cities! Right after we returned home, I had a fever. Then came vomiting, chills, and orange pee?! It was alarming, so I went to urgent care and they told me it was a UTI and sent me home with antibiotics. I wasn't convinced, but it was the weekend so I'd have to wait to call my OB. After a few days of antibiotics my pee color became darker and I started itching everywhere. Assuming it was an allergic reaction, I stopped the meds but the itching became worse. No welts, no rash- just itching. I called my OB who wasn't concerned and said she would see me at my appointment the next week. After two nights of no sleep and scratches on my body that had my arms, legs, and chest bleeding, I decided to "google" my symptoms at 4 AM. I found many medical resources all pointing to the same thing- cholestasis of pregnancy (ICP). The orange pee, the intense itching that is concentrated on your hands and feet.. But it is rare. Like 1 per 1,000 births or more. The next morning I called my doctor and asked if she would rule it out with a bile acid test. The nurse said no and that I'd be in next week and we could talk then. I hung up and cried. And itched and cried some more. Another night with no sleep passed, and I became a mommy on a mission. I called my OB again and demanded that I be seen that day- crying and all. I think she only agreed so that she could evaluate my mental health :). At my appointment I was told to stay off the Internet, to calm down for the health of my baby, and that she would run some tests. Later that afternoon she called me personally to let me know my Liver function test came back normal and to not worry anymore. I told her that until my bile acid test came back okay that I would still be concerned. A week later the results came in- bile acids were 47! Anything over 10 is ICP and over 40 is considered severe. She wouldn't admit I had ICP until I asked her. She wouldn't even prescribe me the medication needed to control this disease until I met with a hepatologist. I asked for a referral to MFM as well. Thankfully I got in that week with the hepatologist- he was so nice and wrote me the prescription I needed, but told me that my dr. should have sent me straight to MFM since the risks are with my baby and not me. I couldn't have agreed more! I saw my MFM in Tampa the next week and felt relief to have someone on my team. She said my levels put my baby at risk for fetal distress and even stillbirth. I was assured by her that my OB would follow her protocol to deliver by 37 weeks and do biweekly NSTs and biophysical profiles until then. Daniel and I left feeling relieved to have proper care after weeks without it. We were also scared because this was the first time hearing out of a doctor's mouth the real serious risks that we had been reading online.
So my story should be all good from here.. But it wasn't! My OB pretended like she didn't get a report from my MFM and refused to deliver me early. My levels had gone down and she said that I didn't even have ICP anymore! ( it cannot go away until you deliver by the way). She told me to stop the medication and I laughed at her. At that point I was 35 weeks and had to find a new OB. It was such a stressful time, but at 36 weeks I met my new doctor and set an induction date for a week out at 37+1 !
On my 28th birthday (april 29th) after 4 very fast hours of labor, I was holding my perfect baby boy in my arms! My labor was a pitocin only, natural experience and it was very rewarding. And no more itch! He was checked out by the NICU team and was perfectly healthy!
I wanted to share my ICP experience because sadly this is a common scenario of uninformed doctors who don't give proper care or listen to their patients because it is so rare. I want to help spread the word about this disease in hopes of saving lives of babies who are at risk at the hands of doctors who don't know enough. Thank God for modern technology to monitor my baby, for "google" that gave me knowledge to fight for proper care, and for the doctors who cared for me and our sweet baby to keep the risks as minimal as possible.
From the statistics, I have a 40-90% chance of having ICP in a future pregnancy. Is it worth it? You bet! Our lives would not be the same without our sweet baby Connor :)
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