The story of Jenny
This is my journey with cholestasis. To begin my story, I would like to give the background of my already high-risk pregnancy. My husband and I were married in January of 2017. We were both single parents for many years and the youngest was graduating from high school. At the time, our blended family consisted of two 18 year old girls and two 21 year old boys. This was the perfect time to begin our lives together. I was 43 and my husband was 46.
In August of 2017, just after my 44th birthday, I began having symptoms of, what I thought, was menopause. I texted my friend to ask her about the symptoms of menopause and she promptly told me to take a pregnancy test. I thought no way, no how am I pregnant. You see, nine years before I had an ablation due to a uterine cancer scare. Essentially, I did not have any uterine lining so I knew a pregnancy was nearly impossible and also would be very dangerous. Without adequate uterine lining, the baby has nothing to attach to in the womb. This is also very risky for me.
Sure enough, three pregnancy tests instantly turned positive. Our fear and worry, due to my age and due to the ablation, was in full swing. I also had a third complication right from the start. I already had a history of preterm labor and early birth (not an ICP pregnancy). So, here I am with a geriatric pregnancy, MANY risks due to ablation, preterm labor worries, and just scared out of my mind. I should also mention that I was also dealing with a partially detached retina. Apparently the stress of the pregnancy caused this weird complication. When this occurred, it was very concerning since I could not see out of that eye. But, pretty quickly, my retina complication went to the back burner.
I immediately found an obgyn, Dr. Saira Rana, that I LOVE! She was very supportive and was also very worried about all of my conditions. I pretty much started seeing the maternal fetal medicine doctor right away. Both doctors did express their concern for my health and a viable pregnancy. But they both expertly took care of us. I received the progesterone shot each week and had ultrasounds every two weeks. Baby was a rockstar.
Baby was breech from the moment they could tell she was sitting that way, and never really moved out of breech position. At the 20 week ultrasound, we found out babygirl had clubbed feet. This was hard news to hear, but thankful it was not something worse. I also started dealing with restless leg syndrome. This pregnancy just kept getting more interesting!
A couple of days after my 20 week scan, I began to feel severe back pain and contractions in my stomach. My doctor immediately put me on bedrest. Thankfully, I was not in full labor at all. I was already having the internal ultrasound every two weeks to make sure cervix was closed. Even with the contractions, cervix remained closed. I could deal with these contractions, but it was yet another worry that the baby would not survive. The MFM was also closely watching my placenta due to my ablation. Ironically, the complication due to my lack of lining, was turning out to not be a problem.
The day I reached 26 weeks, and was soon “promoted” to monthly MFM visits, was a happy day! Not because I minded the doctor, I loved going! But because now my baby was viable. I loved that word! I was still on bedrest due to contractions and still seeing my obgyn weekly for shots and check ins. But I felt like I could finally stop being so scared. As shocking as the news was for us, we really loved our precious miracle!!
At 27 weeks I started to have this intense itching from head to toe. I thought fire ants were eating my skin. I would cry for hours!!! NOTHING relieved the itch. But, I knew every pregnant person itched so I thought I was being dramatic. During day three of itching, I felt a dramatic decrease in my baby’s movement. I was immediately sent to the hospital for monitoring. Baby was doing great when we hooked her up. What a relief! We also discovered I was having more contractions, more frequently. Some contractions I didn’t even feel. I was sent home and told to monitor movement and contractions very carefully.
While in the hospital, I did not mention my itching. Again, I thought I would be stupid to mention this intense itching. Well, three days later the itching was so bad that I called my husband in tears. I argued with him that I was not calling the doctor to tell her that I was itching. He said he was going to call if I didn’t.
The next day, I called my obgyn. Within 20 minutes of my calling, she had me in her office. She immediately told me about cholestasis. She said it was very, very rare, but she wanted to test for it anyways, due to my itching. She told me it could take two weeks to get results because there are only a handful of labs in the country that test for this. She was so caring and so knowledgeable about this potential disease. She also shared that in her 30 years as an obgyn, she only saw this a handful of times. I happened to have an appointment with the MFM in four days. Of course I Googled ICP as soon as I got home and started freaking out. This disease could kill my baby at any minute. I found the ICP Care/Itchy Moms Facebook group and was glued to reading all I could until my appointment. I was so thankful for these expert resources! I was also keeping this scare from immediate family because I didn’t want to add more worry to an already worrisome situation. I wanted to wait for a diagnosis.
When I went to that MFM appointment, my itching was out of control. But the baby did fantastic during the ultrasound. They also did a biomedical profile and baby did great! The MFM doctor felt like I had the classic symptoms of ICP. He prescribed URSO and had me set up weekly appointments with him for biomedical profile (BPP) ultrasounds. In addition, I was to see my regular obgyn three days after each BPP for a check up and non-stress test. He explained how this disease could harm the baby. One minute they baby could by fine, the next she might not be ok We had to be very vigilant. Once again, I was thankful for two wonderful doctors.
My bile acids finally came back. I had a severe case since my numbers were in the 40s. At the following MFM appointment, he told me he wanted me to deliver at 36 weeks, due to the ICP severity. He warned that with all of my other complications, they would closely monitor to make sure they would not need to take the baby sooner. He also told me I needed to start to get non-stress tests each week, in addition to the BPP. I was going on Mondays for BPP at MFM, Tuesdays for my shots, and Thursdays for my doctor appt with obgyn. They were keeping a very close eye on us! So many people were praying for our little miracle, especially during this latest complication.
At this point, baby was still breech. Both doctors offered to try to flip the baby, but we declined. They both agreed baby chose breech early on and we were going to keep it that way, unless she chose to flip on her own.
During the weeks with ICP, my itching never decreased. Nothing really helped. But, my bile acids went back down to the normal range with the URSO. We were counting down the days until our sweet baby would arrive!
My c-section was scheduled for 36 weeks on the dot. Baby girl was still breech. I was worried about having a premature baby, but the constant worry with ICP was very stressful. Anna Rose was born at 6:48 a.m., weighing 6 lbs 12 oz. She did not need NICU and was going great!
I, on the other hand, began to quickly decline. Remember the initial concerns about my lack of uterine lining due to the ablation? Well I actually had placenta accreta. This is yet another, rare, very serious condition in which the placenta is attached to the uterine muscle. Basically, if I hadn’t had a c-section, there is a real possibility I could have died giving birth vaginally. In addition, if I would have gone full term, even with a scheduled c-section, the results could have been disastrous if that placenta tried to detach in late pregnancy.
I guess you could say that ICP saved my life. If I hadn’t had ICP, I would never had been scheduled early. And, the fact that Anna Rose chose to sit breech, also saved my life.
My husband went with the baby to do her skin to skin time while the doctors worked on trying to repair the accreta. I had received some additional meds and anesthesia, but I was aware of what was happening. I remember being very scared.
When I was finally back in the room with baby, I had to be watched very closely. I had balloons in my uterus to dry to stop the hemmoraging. Every 15 minutes, nurses would come and push on those balloons.
The baby was doing well! She was very sleepy, looked a bit jaundice, and needed lots of cuddling to maintain her body temperature. We had lots of visitors.
I, on the other hand, was not doing very well. My vitals ended up dropping to dangerously low numbers in the night. My blood count also dropped. The next day, I had two blood transfusions. This blood saved my life. I almost instantly felt better.
Anna Rose was doing well, but she was losing weight rapidly and getting very yellow. I had AMAZING lactation support at the hospital. They tirelessly worked with me to get Anna Rose to nurse. One nurse in particular, the lactation consultant, Nurse Judy, spent A LOT of time with Anna and me. She took the time to explain that due to my age, the hemmoraging, and having an early baby, breastfeeding would be very hard at first. She explained that Anna’s little jaw muscles were not strong yet, due to being early, and that she was extra tired! I’m so thankful Nurse Judy explained all of this, or I would have given up breastfeeding. The entire nursing staff was so helpful and supportive!
We were both discharged after 4.5 days. Anna Rose almost didn’t get to leave due to bilirubin, but her levels were not high enough for treatment. She also had lost over a pound since birth.
Over the next two weeks, we made almost daily trips to the hospital for weight checks with Nurse Judy and blood draws for Anna Rose, because her bilirubin levels kept rising. We also made extra trips to the pediatrician. Just about the time she was going to be readmitted, her bilirubin levels began to drop. She was also breastfeeding like a champ and finally gaining weight. By one month, she was back up to birth weight.
When she was two weeks old, she began the casting process for her clubbed feet. Each week for 8 weeks we would go to the doctor to get the casts changed. After the casting, she went into full time boots and bar. Anna Rose was a trooper, but we had many hard nights. She would scream constantly with gas pains. At six weeks old, we discovered that we had to do daily stretches in her bottom to help her poop. Somehow her little hole was not open all the way.
When Anna Rose was almost four months old, I went to Nurse Judy sobbing because Anna cried, literally, all the time! And, nursing was very painful. Nurse Judy discovered that Anna Rose had a lip tie. Two weeks later we were at her four month check up. The pediatrician confirmed the lip tie. Within a few days, we were at a special dentist getting the revision done. We joke that Anna’s crabby gene was also clipped! She was almost like a different baby!
Around this time, I was having more and more severe gallbladder attacks. In addition, I was still consistently itchy. I had already had my bile acids tested three times since giving birth. My numbers kept getting higher and higher. After a particularly awful gallbladder attack, I had an ultrasound. The surgeon confirmed I had many gallstones and a very large one was blocking my bile duct. So, on my 45th birthday, my beast of a gallbladder was removed.
Now, 10.5 months later, Anna Rose and I are finally doing well. She is a precious miracle that has overcome so much. She is a happy baby that loves life! ICP was a very scary time. I try to tell my story as much as I can because I want others to understand “the itch” while pregnant might not be normal.