After being diagnosed with the high risk condition ICP in my second pregnancy, I was determined to have another baby, and I was even more determined to beat the ICP. I had done my reading. I had searched out countless journal articles and had learned that ICP was more common in winter months. “Plan for a fall baby!” I told myself. Avoid the winter, avoid ICP. I had read that some moms had good luck reducing their ICP symptoms with a healthy diet, and I’ve always believed in eating healthy. Eating healthy foods is good for anyone, good for any pregnancy. Avoid a poor diet, avoid ICP. Or so I thought.
It took me several years to convince my husband that another baby was a good idea after ending up in the hospital for a week in the previous pregnancy. “It won’t be the same,” I told him. “Even if the cholestasis does come back, we’ll know what it is, and we’ll know how to treat it. It won’t be a big deal.” These are my famous last words.
I marched through my pregnancy determinedly, proudly announcing to everyone that there was “no sign” of the ICP, as I scratched frantically at my scalp. I had recently switched to a new conditioner, and I convinced myself that I was having a mild allergic reaction. I hadn’t gained a single pound – in fact I had lost weight – but I ignored that entirely. I kept telling all my friends that all I really wanted was to have a natural labor experience, something I had always wanted but been denied.
Then one morning I woke up, and I couldn’t deny the fact any longer. The ICP was back. When I went to the bathroom that morning, my urine was the same color as the bathroom door, and there were ants crawling underneath my skin. I called the doctor’s office and eventually ended up seeing my sister who prescribed me Urso, sent me for fetal monitoring, and set me up with an appointment with the practice’s only OB. Three days later, when I went to the appointment, the itching had only intensified. Each day was worse than the last. I asked the OB if we would be shooting for a 36 week delivery again. He responded by saying that he wasn’t going to be in a hurry to deliver me.
I had done my reading, and this did not make me happy. I argued that too many people lost babies by trying to carry too long with ICP and I was not comfortable with this plan. “Research shows that if the baby looks good on the biophysical profile that the baby will be fine for the next week,” he told me. “Also, babies are not really at risk from this condition. I believe those reports of stillbirth are actually misdiagnosed HELLP syndrome.” These are two very common and persistent misconceptions that make it difficult for women with ICP to get treated properly all the time. You can read more about these misconceptions here. Eventually he was convinced to honor my wishes, but I left the office with a horrible feeling nonetheless. It was hard for me to trust this doctor, whom I did not really know, when he did not take my condition seriously.
Because of my concerns and frustrations, I joined the ICP Care support group, reaching out to other women with my condition about my fears that my doctor was not fully up to date about ICP. That, I suppose, is the day that history was made. I have now been a Moderator of the group for more than two years, and more recently Support Groups Manager as well.
In the meantime, the itching only grew worse. I began to accidentally scratch off huge patches of skin in my frantic attempts to soothe the itch that can never be tamed. By the time I arrived at my next appointment with my new OB, he no longer needed convincing. “We won’t be going past 36 weeks,” he told me.
I kept plugging away, one day at a time, each day growing even sicker than I had been the day before. I couldn’t eat and my sleep was interrupted by the incessant itching that only intensified when the sun set. Then the pain began to set in. I’d been having pain in my liver for months, but now I was hurting everywhere. Every joint in my body felt like it was about to explode. This is not a common symptom of ICP, but I can never do things the simple way. The pain quickly became even more of a problem than the itching. Between the two it was impossible to sleep for more than 15 minutes at a time. I saw my OB again and he asked me how I was doing.
“I’m beginning to have trouble sleeping,” I told him. If you’ve read my earlier blog posts I think you will begin to see that I have a tendency to minimize my symptoms.
After a new set of labs were drawn I headed home, only to find a message waiting for me on my answering machine when I arrived. It was my OB, and he had left his pager number for me. I turned to my husband as I dialed the number. “This doesn’t sound good,” I said.
It wasn’t. My liver functions had doubled since the last time they were drawn, only three days earlier. At this time I was only a little more than 34 weeks into my pregnancy. He wasn’t ready to panic yet, but he wanted me to make sure I called or paged him if things got worse for me in the meantime.
Folks, I honestly don’t know what it would have taken for me to realize that things were getting worse. I don’t know what would have had to happen. Things got exponentially worse every day, but while I was in the middle of it I couldn’t see it. I hurt so much I didn’t want to be touched, which was unfortunate because the sicker I got, the more Alec (who was now almost three) wanted to cuddle with me. Usually I love cuddling with my kids, but right then, it was absolute torture. Sleep was nothing more than a fantasy.
Three days later I was back at the clinic. I was not scheduled to see my doctor that day; I was only supposed to have more blood drawn for labs and then I was to see the nurse to have a steroid injection to help mature my baby’s lungs faster. I went to the lab first and had my blood drawn, then to the nurse. She stopped dead in her tracks when she saw me approaching the counter. “Hilary,” she gasped. “You need to see your doctor!”
She showed me into the room and went to retrieve him. My face was as white as a ghost with dark, sunken eyes, and I was shaking all over from lack of sleep. A short time later my doctor appeared. “What’s going on?” he asked.
I burst into tears. “I’m really sick,” I admitted.
After a very short visit I was taken to a wheelchair and admitted immediately into the adjoining hospital where they started to make plans for delivery. I called my husband and asked him to come as quickly as he could, and we prepared for an amniocentesis. As my OB was using the ultrasound to guide the needle, we made an upsetting discovery. “Baby’s breech,” he announced. He had been head down for twelve weeks. He had been head down three days ago at our last biophysical profile. Now, when things were getting dire, he was breech. This was not good news. My body was becoming deadly – I was poisoning my baby, and now we had a difficult decision to make. Should we try a version to get the baby in position for induction? Versions are only successful about 50% of the time, and there was not much time to spare. Should we opt for a C-section?
As I tried to decide what to do, the results from the latest lab draw returned. My liver functions had doubled again since the draw three days ago. A few hours later the results from the amniocentesis returned as well, and there was more bad news. The baby’s lungs were not yet mature. The OB came to talk to me a little while later. He wanted to keep me in the hospital for monitoring. I would receive my second steroid shot the following day, and according to the lab results the baby’s lungs were very close to being mature. We could deliver in two days, but there was no time to waste. We didn’t want to risk a version failing and setting us back even farther, so it would be a Cesarean. My dreams of having a natural childbirth experience were gone, but suddenly that didn’t matter any more. All that mattered was that I got my baby out of my toxic body before it was too late.
When the time came for the Cesarean section, I walked down to the OR early in the morning when all was still dark, and I could not shake the feeling of dread that loomed over me. Something was telling me that things were not right. In preparation for the surgery many people had come to talk to me, including the OB. “There’s a small chance that the baby could need to be transported to another hospital,” he told me, meaning one that had a better equipped NICU. “Maybe 1%,” he continued. “I don’t think that will happen. I think baby will come out screaming.”
The surgery began, and there was even more bad news. Overnight, the baby had flipped again, and he was now transverse and they couldn’t get him out. After trying for some time, the OB was forced to make a T-incision. I firmly believe that my baby was close to death. Most people know that decreased movement is a sign that baby is in distress, but many don’t know that a sudden increase in movement means the same thing. He was uncomfortable and being poisoned. Finally Lucas was born, and I remember praying, “Please come out screaming.”
I was met with silence.
I was crying, and surrounded by more people than I could count, but I’d never felt so alone in my life. I could do nothing but listen as I was sewed up and the respiratory team worked frantically on my baby. He was blue, he was not breathing, and he was floppy and completely non-responsive. His first Apgar score was 1. The respiratory team was breathing for him, and the decision was made to make that transfer to another NICU. As they breathed for him, his skin began to turn pink, and for that reason his second Apgar score came in at 3, still desperately low. He was taken away to prepare for a helicopter ride as I was taken to recovery having not even seen him.
As I lay in that recovery room, I wished that I had been put under general anesthesia. I wished that I was not awake to have to live with the despair, because I was convinced that he was going to die. Eventually I was moved back into my birthing suite, the very same room where Sydney had been born. I had been so happy at first to be back in the room that brought me all the joy of my first child, but suddenly it had taken on a new and more sobering meaning. It took some time to prepare him for transport. He was given an X-ray to check for a pneumothorax – what the layperson would call a collapsed lung (he didn’t have one), he was intubated so that they could continue to breathe for him on the helicopter ride, an umbilical IV was started so that they could administer drugs and later nutrients since he wasn’t able to start nursing right away, and he was packaged in an isolette.
When all this work had been done, they wheeled the entire isolette into the room so that I could see him before he left. I saw him and I started crying. The flight nurse tried to comfort me by explaining that the tubes and wires were all to help him. I knew that. I was crying because I had just had a C-section and I couldn’t reach into the isolette to touch him. They were taking him away before I got to touch him and I thought he would die before I got the chance. Then he opened his eyes, just one tiny slit. I got to see them for that split second, and then he was gone.
The next day the doctor who was seeing Lucas called me to tell me that he had developed an infection around the umbilical IV and they were treating him with antibiotics. They had given him the chance to start breathing on his own, but he wasn’t ready yet, so the breathing tube had to remain in place. Later in the day my OB came to see me, and he gave me a pass to leave the hospital to drive up to the NICU to see Lucas. My sister, the doctor, drove me there and helped negotiate me through the maze of the hospital in my wheelchair. By the time I arrived, Lucas had started to breathe on his own and they had removed the breathing support. I reached into the isolette and he reached up and grasped my finger, and I began to cry for the third time. This time they were tears of joy because I finally believed that he would be okay.
My experience with ICP is not the typical experience. In fact there is no such thing. If there is one thing that I hope people can take away from my story, it is to realize how serious and unpredictable this condition can be. ICP is something that can never be taken lightly. I had a very close call. The sense of dread I felt while walking to that operating room is something that I have come to believe in. I believe that our bodies can tell when something is horribly wrong. I have spoken with many, many women with ICP. I have spoken with other women who have had close calls like mine, and I have spoken with women who have tragically lost their babies to this horrible disorder. The only commonality I have heard time and time again are those words, “a sense of dread”.
On the other hand, I want to offer hope. ICP is not a death sentence. Far from it! There is a very easy solution. It takes only two simple things to reduce the risk of ICP to that of an uncomplicated pregnancy – the medicine Urso and early delivery. Those two things are what saved Lucas from my toxic body.