ICP:
“My Story Could Have Ended in Tragedy” By Tenauh Lopez (ICP Care).
June is ICP (Intrahepatic Cholestasis of Pregnancy) Awareness Month, ICP is a medical condition where women experience a very severe itching during pregnancy. PregnancyBeyond has teamed up with ICP Care. To raise awareness of this liver disorder. That develops during pregnancy. In which bile flow is impaired within the liver itself. This condition has been shown to pose a serious risk to the unborn baby.
In today’s post, one mom emphasizes the importance of raising awareness of this pregnancy-specific liver disease.
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My story began in 2012, I got married and we wanted kids as soon as possible. We started to try and conceive. I found out on the eve of my wedding that I was pregnant. We were super excited to start our new lives together and raise our future children. Unfortunately, the next day I woke up to heavy bleeding and took another pregnancy test which came back negative. My mother-in-law took me to the emergency room to verify that I had a miscarriage. We were deeply saddened that I had lost the baby. I knew it would happen at the right time. For the next couple of years, we consistently tried to get pregnant and failed. We visited many specialists and fertility doctors.
The test results showed that he had a lot of fertility problems and we would most likely need to do IVF in order for me to become pregnant. I also have Neurogenic Cardiac Syncope and was told I would not be able to have a child naturally. Ultimately, if I was able to conceive it would be a high-risk pregnancy that I would most likely be on bed rest my whole entire pregnancy.
At this time there was a lot of stress and we ended up getting divorced.
After my divorce, I became very depressed and thought I would never have the opportunity of becoming a mother and did not think it was possible due to previous miscarriages and my medical condition. After consistently trying for six years nothing happening you get very doubtful. In 2017, I decided if it doesn’t happen this year naturally I would save up for IVF. I wanted to try one round of it and if it failed my plan would be to adopt.
I was engulfed in my job and living life. Out of the left-field, I started feeling really nauseous. After so many negative pregnancy tests I thought I got a stomach bug. Then I remembered I was late on my period but only a day late and I really didn’t think much of it. Finally, it bothered me so much that I just went and bought a pregnancy test thinking it would be negative. Low and behold the test came back positive.
I was over the moon excited but worried that I would have a miscarriage again. I had my HCG test every week and I prayed that my numbers were rising and not falling. Further, I didn’t tell anyone that I was pregnant until I reached four months of pregnancy. My dad was the first one I told and he was in utter shock. Because he remembers the call we had a couple of months before. Telling him that I was really seriously considering doing one IVF treatment and adopting.
Around 4 months, I went to the doctor just for a general check-up because I started itching and sneezing. I thought it was just my seasonal allergies. I was taking Benadryl but it wasn’t helping. Also, I got bit by some ants at work and I am allergic too. I just thought it was just a reaction to that. It concerned me though since I was still itching 7 days after I got bit. I noticed that I started itching really bad at night to the point that it was keeping me awake.
My general doctor went on to tell me that during pregnancy this could be something serious with my liver. This scared me a lot and it concerned me knowing how it could affect my unborn baby. He drew blood and ran a blood test to check my bile acids. My OBGYN called me the same day and said to come in because he had drawn blood to do the wrong test. I was deeply
confused. She explained to me that there are two tests. One is to check your levels if you are not pregnant and the other checks your levels when you are pregnant because they vary.
At this point in time, I asked her what is the medical name for this condition that was going on with my liver. She told me Intrahepatic Cholestasis of Pregnancy or ICP. I was on pins and needles while I waited for my test to come back so I googled ICP. The first thing that came up in my search was a music band that paints their faces like clowns. I knew instantly that cannot be the right abbreviation. So I researched the medical name Cholestasis and found a support group ICP Care with a lot of information about this high-risk pregnancy.
A couple of days later my doctor called me back to let me know that I had a diagnosable bile acid level and I would need to start the medicine to treat ICP called Ursodiol. I don’t know which was worse the itching or the medication. My daughter needed monitoring with weekly non-stress test and biophysical profile ultrasounds. Another important part of treatment is early induction. My levels were high enough requiring me to be induced at 36 weeks.
During her biophysical profile ultrasounds, it showed she was measuring two to three weeks smaller than she should be. She measured 4 lbs 2 oz at my last ultrasound. My doctors prepared me for the possibility of her being in NICU for an extended amount of time. Also, they were afraid that her lungs may not be mature enough for her to breathe on her own. Their plan was to give me two steroid shots for lung maturity before induction.
Even with this added stress, I continued to work all the way up until the day I was induced. I started my induction on 3/12/18 at 7:00 am in morning. Lilac May Walker arrived weighing 4 lbs 6 oz at 11:52 pm on 3/13/18. Lilac defied all odds and regulated her temperature, breathing, and blood sugars all by herself. This meant she did not need any NICU time.
After she arrived, I stopped itching momentarily enough to see the scars that were left on my body from itching. After 3 days postpartum the itching returned and is still prevalent which is likely cyclical even though my bile acids are within in range.
Since my experience with Cholestasis of Pregnancy, I will continue to advocate to spread awareness about this condition with high risks for the baby. Many women still go untreated and undiagnosed. Fortunately for me, I asked questions and went to the doctor. If my story in any way will help save lives and create awareness I will continue. My story could have ended in tragedy. But I was lucky enough to be surrounded by a team of physicians, who were educated about the high risks. (Find more info. on ICP here)
READ: HOW ICP CHANGES YOUR PREGNANCY
The ICP Care:
ICP Care is a 501(c)(3) nonprofit determined to help pregnant mothers who experience Intrahepatic Cholestasis of Pregnancy and to deliver healthy babies. ICP Care’s mission is to provide patient support and education. Raise public awareness, support the advancement of research, and improve health care practices. ICP Care helps to connect, support, educate, and empower those affected by ICP – Intrahepatic Cholestasis of Pregnancy.
We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals, and creating a supportive community for friends and families of anyone affected by ICP. We hope that one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy, resulting in less suffering and healthier ICP babies. Find them on Facebook and at www.icpcare.org
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