"I had blood work done, and five days later I got the call that I tested positive."
Cholestasis … a word that I never knew changed my life forever. Cholestasis is a condition I’d never heard of until July 2013. I was 16 weeks pregnant with my fourth child and attending my uncle’s wake. I was very close to him. As I was visiting with family and mourning the loss of a beloved family member, I began to itch. I thought nothing of it until I couldn’t bear it anymore. My thighs were so itchy; I wanted to scratch my them off. I thought to myself, was it an allergic reaction? Maybe the laundry detergent? Maybe the funeral home was infested with bugs? … My mind was wandering.
I went home, took a bath and went to bed. Well, the itch persisted in the days that followed. Something just was not right, so I mustered up the strength to look online (which I try to avoid because if I look online, a hangnail can mean death). I came across the word “cholestasis”—a rare liver condition that can be induced by pregnancy.
I thought I was probably being overdramatic, but it’s better to be safe than sorry. So I called my OB who suggested I take allergy medicine. I tried the allergy medicine, but the itching did not let up. It persisted until my next doctor’s visit. My amazing doctor suggested testing me for cholestasis as a precaution although he was confident it was probably not that.
I had blood work done, and five days later I got the call that I tested positive. Normal range at that stage of pregnancy is 0.5-9. I tested at 19.8! What?! I’d had three normal pregnancies. Where did this come from? What did this mean for my baby? As I sat down with my doctor, he explained that the itching was caused by excess bile flowing into my bloodstream. As long as they monitored the condition, the prognosis was great for the baby. The biggest risk is the possibility of having a stillborn in the last few weeks of pregnancy. Because of this, they almost always deliver between 36-37 weeks at the latest.
Once I got on my medication, the itching subsided. I found a wonderful support group on Facebook and went to the doctor every week for monitoring just to be safe. They tested me at 28 weeks, and my levels had gone up to 42, which is considered severe cholestasis. At that level, my doctors weren’t sure what it meant for the baby. I received steroid shots that week for the baby’s lung development just in case he had to be delivered early.
Weeks went by, and with each kick, it brought me comfort that my baby was still thriving. I went to the Maternal Fetal Medicine (MFM) doctor at 33 weeks who ultimately made the call for delivery at the beginning of 36 weeks and no later. We scheduled the induction. During those three weeks of waiting, it was such an emotional time for me. But I made it somehow. On December 5, I went in to start induction. It was a slow process because my body was not ready yet.
The next morning, on December 6, I started Pitocin, and my beautiful baby boy Daniel Rafati was born at 12:59 p.m., weighing a whopping 6 pounds, 13 ounces. As I laid eyes on him for the first time, I was so in love. He was perfect. They quickly took him from my arms and said there was a mandatory observation in the NICU for him because he was preterm. I thought that by the time they got me cleaned up and into my room, we would be reunited. I sent my husband to go check on him, take pictures and report back to me. When he came back he told me the doctor said there were a few issues with Daniel’s breathing, but it was not a huge problem. I thought, OK, that’s fine; I’ll see him in a little bit.
I got settled in my room and asked if I could finally be reunited with my little man. As I was rolled in, I wasn’t prepared for what I’d see. He was connected to a breathing machine with all these tubes attached to him. I felt helpless in that moment. It felt like my body had failed this poor baby. It was so toxic inside of me that he had to be taken out before he was ready.
The 12-hour observation turned into two weeks. Maybe he would be home for Christmas, they told me. I was devastated and not expecting that news. It was hard enough being down the hall from him, and now I had to go home without him? Three days later I was discharged from the hospital. Before I left, I had an amazing but bittersweet moment: I got to hold him for the first time since I had delivered him. It was one of the hardest moments of my life. I knew he was in great hands. … The nurses were so amazing, and that gave me comfort—but I wanted him in my hands.
I made the decision to breastfeed. It was the first time I had done that with my babies, but I felt like it was the only way I could help him. I pumped and brought the milk there every day for him to feed. Every day when I woke up to see him was like Christmas. Every day was the same prognosis for him—until I came in the morning of December 12. He was out of his incubator and in a regular bed, with no tubes and a little knitted Christmas hat on. I was so excited. What did this mean?
I talked with the doctor who said if he passed his car seat and hearing tests, he would be cleared to go home that night! It was the best news ever. Later that night we went to the NICU and brought our little guy home. Daniel is a happy and healthy baby going on a year now. He has brought so much happiness to my family’s life. I am so thankful for the doctors who were educated about such a rare disease and proactive on testing me and taking every necessary precaution to ensure the health of my son. I am still itching here and there—but nothing like when I was pregnant.
Further testing is being done to rule out any underlying conditions. It is such a rare condition, and not many people are educated regarding it. It can feel very isolating and lonely at times. If you feel an itch, it probably is nothing. But get it checked out just in case. You never know what life can throw at you. I would have never expected to be diagnosed with this. I have no family history with this condition and was healthy otherwise. It’s not just for your heath but also for the health and well being of your baby! And if diagnosed and treated properly, the prognosis of the health of you and your baby is the same as a normal pregnancy.
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