Judd's Legacy was founded to bring awareness to Intrahepatic Cholestasis of Pregnancy (ICP) in memory of Judd William Gardner, a baby that ICP robbed of the chance to draw breath. ICP is a liver condition brought on during pregnancy that, in its most severe cases, results in stillbirth. The only treatment is delivery, of which timing necessitates close monitoring and repeat clinical testing for bile acids, a byproduct of liver function.
The mission of Judd’s Legacy is to raise public awareness and the medical professionals' knowledge of ICP and promote much-needed testing for mothers experiencing ICP symptoms. Judd's Legacy, through its outreach, supports women affected by ICP to help them advocate for their unborn child.
Judd’s Legacy is a 501(c)(3) nonprofit actively educating the public through social media and public speaking. A goal of the organization is to partner with a South Carolina laboratory to offer total serum bile acid assay testing to pregnant women for diagnosis of ICP and monitoring until birth. To that end, the organization is actively fundraising through individual donations, corporate sponsorships, and an annual 5K run.
Like many couples, Brandon and I have had our struggles trying to conceive and even experienced a miscarriage along the way. So, when we learned we were again expecting, we were so excited, and we each held our breath until we were 12 weeks along. At this point, we were relieved and felt that we could finally tell our exciting news. We were going to become parents! This is something that we wanted more than anything in this world. As the weeks passed, everything seemed to be going just fine. Our 20-week anatomy scan looked great, and I passed the glucose test. Then, it was time to anxiously count down the weeks to our due date, November 21st which is also our wedding anniversary. What better way to celebrate our third anniversary than with the arrival of our first child.
As the weeks passed and I finally entered my third trimester, the excitement was undeniable. Friends and family showered us with precious gifts to help give us a good start to becoming parents. We made the final touches to nursery. The walls were the calmest shade of grey. The wood-beaded chandelier gave off the prettiest shapes on the ceiling. My favorite lullabies were printed and framed. Books were placed strategically next to the rocking chair. Little cotton-tail bunnies hung on the wall, and a plush lamb rocker sat right beside the perfectly made crib. We finally decided on names. Yes, I said names, and no, we were not expecting twins. We wanted the big surprise to be in the delivery room. So, we did not find out the gender. The names we chose were Callie Anne Gardner and Judd William Gardner. Callie Anne is a sweet southern double name with Anne being a family name, and Judd, well Judd would be a strong name, a ball player’s name, a name that would one day leave behind a legacy.
Around 30 weeks I was expecting to have the typical third trimester complaints of feeling uncomfortable and having swelling, but, really, my only complaint was itching. I started itching on my stomach, and this seemed normal... I mean my stomach was three times its normal size. Around 32 weeks I did mention the itching to my OBGYN and was quickly told, “Itching is normal. Just use Benadryl.” No further questions were asked by my health care provider. I thought, “Well, I guess it is normal.” The itching then continued, and the severity of the itching quickly escalated to a not so normal itch. By 32 weeks, I knew something did not seem right. I asked other girls if they itched during their pregnancies, and some said yes, and some said no.
Even though some girls told me they itched during their pregnancy, I couldn’t help but think, “I bet it wasn’t this bad. There is no way.” So, I decided to do a little research myself and began looking up the possible reasons behind itching while pregnant, and I ran across a very alarming condition called Intrahepatic Cholestasis of Pregnancy (ICP). The more I read about ICP, the more convinced I was that this was what was happening to by body. I also started to notice the change in the color of my urine. It was darkening and no longer the normal “straw like color” that I learned of during my lab diagnosis classes while in chiropractic school. Being a Doctor of Chiropractic, I did have enough knowledge of the human body to be able to make a rational decision on whether my symptoms should be of concern. Like I tell so many of my patients at work, “You know your body better than anyone else.” This is what pushed me to call my OBGYN and explain how the itching had worsened. I spoke with a nurse over the phone, and she spoke with one of the doctors in the group, and then explained that the doctor would order a bile acid lab if that would make me feel better. I asked if the doctor seemed concerned or if ordering this lab was to simply put my mind at ease. The nurse then explained, “What usually happens is that pregnant women start to itch. They google these symptoms, read some scary stuff, and then call our office.” I then said, “I bet you get this a lot, don’t you?” She said, “Yes, we sure do.” I decided that since the doctor was not too concerned that I would wait until the following week and have my bile acids tested at my next office visit. After calling my husband to update him on what the doctors had said, I then called my other support system, my mama and my two sisters. We all thought that if the doctor is not concerned then why not wait until next week. Again, that night, I was up hours upon hours itching. Often, I would be awake from 2:00 AM-6:00 AM because of the itching. The itching seemed to be the worse at night. I was able to function through the day because I stayed so busy at work, but as soon as I got home and evening came, I would start clawing myself.
When it came time to get up and get ready for work that morning, I walked down the hall from our bedroom, and Brandon asked, as he does every morning, “How did you sleep?” I quickly responded, “Terrible, I itched all night.” And then followed up with, “Something is wrong. I know it is!” I went on to work, and while at work, my younger sister called and explained that she had spoken with one of the doctors with whom she works. She told him my situation, and he told her that I do not need to wait to have my bile acids levels checked. He suggested that I have my order sent to Newberry Hospital so that I could run over on my lunch break that same day to have my blood drawn. I trusted what this doctor was saying and went to the lab that day. After waiting for a few days, I received my lab work and my bile acids were “normal,” but on the high end of normal. I knew from researching ICP that this was a progressive condition due to pregnancy hormones continuing to rise as a woman moves toward the end of her pregnancy. I kept this information in mind as I went to my next doctor appointment a few days later. At this time, I was 34 weeks pregnant. Brandon had actually come with me to this appointment because we were headed up to the mountains for the weekend following that day’s visit. Like all the other visits, I stepped onto the scale, had my blood pressure taken, and then was asked to give a urine sample. I thought then, “I can’t wait for the nurse to see my urine. I bet she will agree there is a problem.” My urine was extremely dark this day. Brandon was appalled when he saw my sample. I remember him saying, “My goodness, that looks like coffee.” With one look at my urine sample, the nurse looked at me with a very concerned face and asked, “Is there something going on? This is really dark.” I took this as my opportunity to tell her, “Yes, my urine has been very dark, and I’m itching all over.” I showed her my ankles covered in open sores from all the excessive itching. I then explained that I am also bruised on both outer thighs from scratching through my clothes. I then blatantly said, “I believe I have ICP.” She asked, “What is that?” I explained it to her and then waited to see the doctor. Brandon and I sat in the exam room waiting on the doctor, not sure who I would see because there are multiple doctors in this practice. Then, the door opened and in walked a doctor whom I had never met. She gave us her name and quickly said, “Well, you don’t have cholestasis, even though Dr. Google may say otherwise. Let’s talk about what really could be going on.” At this moment, I knew I was leaving that office and finding a new OBGYN. I needed someone who would listen to me and take me seriously. This doctor proceeded to say it may be something as simple as dehydration (even though I tried to tell her that I had been drinking plenty of water) or maybe even kidney failure. See, I only have one fully functioning kidney. The doctor decided to test my kidney function with more lab work and told me my results would be posted to my online MyChart the following day. I left the office upset thinking I may be experiencing kidney failure, but after clearing my head, I went right back to knowing I had ICP.
We spent the next day in both Gatlinburg and Pigeon Forge with some family and friends. Throughout the day, I was eagerly checking my online MyChart for the lab results, but no results were posted. As we headed back to Maggie Valley, NC, where we were staying for the weekend, I decided to give my doctor’s office a call. I spoke with a nurse concerning my labs, and she was able to tell me that my kidney results looked just fine. She explained that the doctor had not looked at the results; so, she would get the doctor to verify what she was saying and give me a call back. As we pulled into the driveway where we were staying, I noticed an incoming call that looked to be my doctor’s office. I answered and quickly realized that it was not my doctor’s office, but actually a nurse calling from Labor and Delivery at the hospital. The nurse explained that my doctor looked back over my lab work and noticed elevated liver enzymes and believes she may have missed something. She went on to say that my doctor needed me to head straight to labor and delivery and to not wait until Monday. I realized the urgency of this call and agreed we would head that way right away.
During the drive to the hospital Brandon and I were very quiet. He and I were both doing a lot of thinking. We were wondering if something was wrong, wondering what they were wanting to rule out, and also wondering if we were about to become parents at 34 weeks gestation. We knew this was early, but also knew we needed to do what was best for our child. Once finally at the hospital, we were taken to triage. A urine sample was given, blood was drawn to begin the blood work, and I was placed on a fetal monitor. No one ever explained what the doctor was trying to rule out; so, I finally asked. We were told they were trying to rule out pre-eclampsia due to the elevated liver enzymes. I thought to myself, “Why in the world will no one acknowledge that this could be ICP that we need to rule out.” Nervous and scared we waited. A couple of hours later the on-call doctor stepped in and explained that they indeed did rule out pre-eclampsia. She continued to say that I, in fact, do have cholestasis. This was not big news to me, because for weeks now I knew this is what I had. I was actually relieved in a sense, because being diagnosed was the first step to keeping my baby safe. The doctor told me that they would keep me over night to continue to monitor the baby and to have Maternal Fetal Medicine (MFM) come by in the morning to perform an ultrasound, draw fasting labs to check liver enzymes, and speak with me on what my treatment from here would be. Brandon and I were then moved to another room and were able to see our parents who were all anxiously waiting in the waiting room. I remember trying to tell my parents that we were okay and there was no need for them to come, but we all know how well that worked. I guess being a parent you will always worry about your babies and that is what I had been experiencing this whole time as well, worried about my baby.
The next morning, we had our ultrasound and got to see our baby and all his/her hair. I remember them telling me how much hair our baby had, and, so I for some reason, I started picturing jet black hair, just like his/her daddy. The MFM doctor then came in and talked with us about my diagnosis and explained that ICP was once thought to be associated with possible stillbirth. He said for years they thought there was a connection, but now they believe there is no risk of stillbirth due to ICP. This doctor said we do not want to risk the fact that some of the current ideas of ICP may not be correct; so, he said we would monitor the baby twice a week and would deliver at 37 weeks. One weekly visit would be at my OBGYN’s office and the other visit would be at the MFM office. The doctor did mention maybe going to 39 weeks, but quickly went back to saying 37 weeks. I was prescribed medication to help me sleep at night and something also for the itching, as needed. The doctor also said we need to check my bile acid level again before I leave the hospital. He said, “We will get this blood drawn and then get you discharged and let you get back up to the mountains for the rest of the weekend.”
After leaving the hospital we did indeed decide to head back up to the mountains. What better way to de-stress and clear your head than to be in the mountains. With it being October and the leaves changing, it was peak season to be in the mountains; therefore, you can only imagine what traffic was like as we headed back. After taking a few alternative routes, we finally made it back to the mountain house. We made the best of our weekend, and I actually had a good time. I was relieved to have all my doctors on the same page, and, now, we have a plan. That night, I itched like I did every night, but that night was even worse. I was up most all of the night, but I thought, “Well, I guess I only have three weeks left of itching. I can do anything for three weeks, and my baby will be worth every itch.”
That following week, I had my first appointment after being diagnosed with ICP. This appointment was at MFM. I had an ultrasound, and everything seemed to look just fine. The lab results of my bile acids were not back at this time, but I knew this particular lab test took some time to get back. The bile acid test is a send-out and not an in-house test. Later that week, I went for my second checkup of the week and this visit was at my OBGYN’s office. Standard procedures for weight, urine sample, and blood pressure were taken care of and the nurse listened to my baby’s heart tones. Then, I sat waiting and wondering which doctor I would see. There were five doctors and one nurse practitioner at this practice, and they wanted patients to see each of them at least once before delivery. Patients would not see the nurse practitioner nearing the end of their third trimester, being that she obviously does not deliver. I figured since I had just been diagnosed with ICP over the weekend, then, surely, I would see one of the doctors, but in walks the nurse practitioner. She read my chart and very casually said, “It says here we need to do an NST today, but you just had an ultrasound a few days ago. So, let’s just wait and start that next week.” I thought that didn’t sound right, but I did not say anything. I then asked if my bile acid results were back and she said, “No.” I was disappointed to not have my lab results, but, once again, I knew it took some time on these results to return. So, I had my strep b test and was sent on my way.
As my weeks of gestation increased, so did the itching. I remember trying to talk on the phone with one of my sisters on multiple occasions and had to tell her, “I’m sorry, but I just can’t talk right now. I am itching so badly, and I can’t concentrate on what you are saying.” I had also begun taking cold showers, lying on the cold hard floor in our hallway, using ice wraps on my ankles. I would try anything that might possibly give me even a little relief from the itching. There was only one pair of sleep pants that I could wear at night that didn't bother me. I just couldn't stand the material of any of the other pants touching my skin. My evening routine consisted of anything that would keep me busy and to keep my mind off the uncontrollable itching. I washed baby clothes every night, cleaned the house from one end to the other, and never once sat down to watch television.
On Monday, October 22nd I had an MFM appointment and once again had an ultrasound. Everything seemed to look great. I saw a different MFM doctor at this appointment, and, like I did at all my other doctor’s appointments, I asked about my bile acid results. The doctor said, “Well I didn’t see your results, but let me go check again.” He returned a few minutes later and explained that he did not see the results but does see where the order was put in while I was in the hospital. He said that maybe one of the other doctors canceled the order. I was confused by this, and then the doctor said that we could draw blood for another bile acid test that day, but that it would not change my treatment plan. He said that no matter what the test results were that my treatment plan would still be to be induced at 37 weeks and not a day later. He went on to make me aware that with this condition there are no warning signs. He said the baby could look good one day on the ultrasound and then be gone the next. He said that if I feel any change in movement of the baby to come in right away.
A couple of days later, Wednesday, October 24th, I left work knowing I had one more day of work and then I was finally going to be off for my maternity leave. The chiropractor that was filling in for me during my leave had been training for the last few weeks to learn our office procedures and software and was ready to go. I went to bed that night feeling the baby kick and move about just like every night. Around 3:00 AM, now Thursday, October 25th, I woke up to severe itching like I did most nights. Once awake, I laid my hands to my stomach and waited to feel the baby move. I waited and waited, but I knew this had happened before, and it ended up just being that my baby was sleeping. So, I decided I would wake the baby up by drinking cold water, eating a peanut butter and jelly uncrustable, and shaking my belly. The baby never moved. I laid on the couch and continued to try to wake my baby and thought that maybe if I could fall asleep on my side, I would wake up to feeling the baby kick. I dosed off for a little while and woke right back up. I repeated this a couple of times, and then around 6:00 AM, I decided it was time to wake Brandon. I woke him and explained that I had not felt the baby move for the past three hours and that I think something is wrong. He didn’t question me at all. He jumped right up out of the bed and said that we had better go on to the hospital. We both got dressed, let the dogs out, and grabbed our blue and pink cigars. I called my employee to let them know what was going on and that I would not be coming into work and then we hopped into the car and headed for the hospital.
During the long 45-minute drive to the hospital, Brandon and I did not say a word to each other. I held onto my belly, hoping and praying to feel movement. I knew this was bad. I had a gut feeling and had a few thoughts of what was to come as we made our way up the road. Once again, we found ourselves at labor and delivery. We waited in the hallway of triage while they cleaned a room for us. We finally were put in a room, and I was given a gown to put on. The nurse placed the fetal monitor on my belly and started running the monitor along my belly. A faint heart beat was heard, and it was around 143 bpm. This was around what my baby’s heart beat had been; so, I did start to have some hope. The nurse then said, “Let me check your pulse.” She held my wrist and counted, and I just watched her face and looked for any kind of reaction. I could tell that she was nervous and then she said that my heart rate was really elevated. I had a feeling then that what we were hearing was my heart beating and not my baby's. She then explained that she was going to leave the monitor on me and that the doctor would be here shortly. While she was out of the room, I looked over my shoulder constantly watching the numbers on the monitor. They were going up and down and then nothing, just two dash lines, and then the numbers would come back. I had an awful feeling and looked over at Brandon and said, “I have never been so nervous in my life.” He said, “I know. Me too.” The door was cracked and through that crack I saw one of the doctors rushing toward our room while throwing on his white lab coat. I also noticed the look on his face. It was a daunting look. My bad feeling got worse. The doctor came in the room and he asked if I had felt less movement, and I explained that I had felt no movement recently. He said, “Well, let’s see if we can round this little peanut up.” He placed the ultrasound head to my belly, and right away I knew what I was looking at. The doctor moved the head of the ultrasound machine around a couple of times, but I knew he could see what I was seeing. I was looking at the four chambers of the heart. They were plain and clear. I also knew they were as still as they could be. He finally looked at his nurses and motioned for them to close the door and looked at us and said, “I don’t know how to tell you this…” I interrupted and said, “I already know. I can see the four chambers of the heart. They are right there.” I pointed to the monitor where my baby's heart was displayed. There was no movement at all. He said, “This baby is gone.” At that moment, my whole world came crashing down. Everything that I had dreamed of was just gone. The emptiness filled my body immediately and all I could do was stare straight ahead in what I guess was shock. I slowly looked over to Brandon and saw a grown man just crushed. This was a pain like I had never felt before, and, looking at Brandon, it was a pain like I had never seen before. As Brandon sobbed the doctor looked at me and said, “I am so, so sorry.” Then he said, “The heart has stopped, and you will, unfortunately, have to deliver this baby.” With my stoic face, I looked at him and only said, “I understand.” The doctor and the nurses left the room to give us some privacy. Brandon said, “I’m so sorry” and just laid his head on my chest as he knelt beside the bed, and we both cried a painful cry. The baby we had created together was no longer with us.
Soon thereafter, we were moved to a labor and delivery room, and there we got to see our families. So much of this is blurry. I have a hard time remembering who all came to the hospital and what conversations we had. I do remember seeing my mama, daddy, and my sisters. Oh, how hard this was. Family means the world to me. I remember the tears, and I remember the heartbroken faces. As Pitocin was started to induce labor, I continued to visit with family. From what I understand, the waiting room started filling up with so many loved ones. Brandon’s entire extended family, our Gaffney friends, our Union friends, our Saluda friends, everyone. This is when all the love and support started, and it has not stopped since. I could write a book on all the love we have been shown. It really has blown us away.
I started to feel some mild contractions, but nothing intense. The nurse checked my cervix, and there had been no progress what so ever. After hours passed and no change, I was given another medication to help progress labor. As time passed and the day was coming to an end, Brandon and I both finally dozed off to sleep. I was in the labor bed and Brandon was on the couch next to me. I remember waking up and thinking, “What in the world are you doing? You need to be up and working and not sleeping.” I grabbed my labor ball and climbed out of the bed and onto the ball and started bouncing. I was determined to meet my baby. The sound of the ball on the cold, hard hospital floor woke Brandon. He asked, “Is there anything I can do to help?” I said, “Maybe we need to walk the halls.” So, we got up, unplugged all the monitors, and started out the door and down the hall. It didn’t take long for both of us to realize that this was not going to work. This was not like any other labor. With any other labor you could walk the halls and look around and be just fine, but that wasn't the case with my labor. While walking the halls all we could see were newborn pictures filling each and every wall. I remember we were quiet as we looked at the newborn pictures, and I started to cry. Looking at those pictures and realizing the reality of our situation was so unimaginably painful. We decided we would do best in our room, so we headed back. We eventually fell back to sleep.
The next morning, Friday, I had still not progressed. I was 36 weeks pregnant, and, well, my body just didn't think it was time to start making these changes toward delivery. More medicine was changed. We visited with more family and friends. My friends held my hands and cried with me. Our families were by our sides every step of the way, giving us the love and the support we needed during this difficult time. They stayed day and night waiting for some change. My sisters and mom started researching ICP right away. I did not know all of what they were researching, because I just was not ready to talk about it, but I knew from the sound of it that they knew more about ICP than anyone else around. They did share with me that it is obvious that ICP needs a lot more research and that there needs to be a lot more awareness of this disorder. Our situation was something that was out of our control, but Brandon and I knew that bringing awareness to ICP was something we could control. We decided, while in the hospital, that we would make something positive come out of horrific loss. We wanted to save other couples from the nightmare of losing their precious baby because of cholestasis. We talked about ways that we could and would bring awareness to ICP. We even talked about hosting a 5K run in memory of our baby to help raise money for ICP research and awareness. We talked about how we could make a difference and what we would do. These conversations distracted me from my present reality for short periods of time. Then, suddenly, I would remember why I was in the hospital. We had just lost our child. Then, all the devastating feelings would come rushing back.
Saturday morning, October 27th, came. An MFM doctor stopped by to speak with us. He explained that what had happened to our baby had just rocked their practice. He went on to explain that he felt sure inducing at 37 weeks was aggressive enough to keep my baby safe. I right away asked if this was cholestatis that took my baby from me. I told this doctor that one of the other doctors mentioned that it still could have been a cord issue. This high-risk doctor quickly said, “No, this was cholestasis.” As we talked, we also learned that those bile acid labs that we had been so anxiously waiting on finally came in the day after my last doctor’s appointment. Something was mentioned about the fact that I was being discharged while my blood was being drawn, and there was some kind of mix-up. We still, to this day, do not know what exactly happened with my labs. After having a nurse look in my file, we found out the lab results, and they were more than double my last results, which were taken two weeks prior. And remember these new results were taken two weeks before we lost our baby. Who knows how high my levels rose.
As I learned I had still made no progress the doctor walked in and gave me a few options. I opted for Pitocin once more in hopes my cervix was softened enough from the last couple of days of medication for dilation to begin. Pitocin was started, and strong contractions began right away. The nurse suggested that I go ahead and get an epidural at this point. See, I had planned for a natural delivery. I had been preparing my entire pregnancy for this day. I read several books, studied the Bradley Method natural delivery, practiced relaxation with my coach, Brandon, and had prenatal chiropractic care. I was ready. But the whole idea of the natural delivery is to help protect the baby from intervention during the delivery and from the toxins of the epidural. Now, with our situation, well, what was the point. I had been through enough pain. I got the epidural. The contractions came so fast. I had no breaks, and they were strong right from the very start. After increasing the medication through the epidural, the pain was finally gone, and the epidural had finally taken affect. I laid in the hospital bed, resting for a very short time. Then, the nurse said, “Maybe we should check you.” I thought, “Sure, go right ahead, but I’m sure not much has changed in this short time.” She looked, and said with wide eyes, “You are fully dilated, and the baby is crowning!” My sisters and parents looked at me with the same look I’m sure I gave them. Fear just took over my body. I was about to meet my baby who would be sleeping. I was given options of the nurses washing the baby, swaddling the baby, and putting a little hat on him/her and then handing him/her to me or to just have the baby put right on my chest. Well, if you know me, you know I chose to have the baby placed right on my chest. Into this world entered my baby. My mom said, “What is the gender?” and the doctor said, “It’s a little boy.” We just cried, and Brandon looked at me and said its okay. He knew that I knew he wanted a boy so badly. The doctor laid my precious baby boy on my chest and there was no sound of a baby's cry. My baby was born sleeping. Instead what was heard was the cry of his mama and daddy.
Judd William Gardner made me a mama on October 27, 2018. This was only six days before my induction date. Although this was the worst day of my life, it was also the best feeling in the world to become a mother. To hold my baby in my arms and up against my chest and to know that he was mine is just indescribable. I held my baby and sang him three of my favorite lullabies and told him how much I loved him. And for all of you wondering, he was the most beautiful baby I have ever seen.
On October 30, 2018 my baby was laid to rest, and since that day we have had a lot of ups and downs. Good days and bad days. Good moments and bad moments. At first, I could not talk about ICP at all. I would find myself trying to research it, but quickly realized it was too soon after losing my precious Judd. I needed more time before talking about ICP or reading about ICP. My mama and sisters though, they were on top of it, researching every inch of the condition and getting a plan together for the future. They wanted nothing more than for me to have a beautiful healthy baby to bring home. We needed to know what other women with ICP had experienced and what they did to have a successful pregnancy. My mama and sisters decided to join as many ICP awareness Facebook groups as they could and started asking questions and reading other stories. They learned a lot and were eager to share with me. When the time came, and I was ready to hear what all they had learned, I was excited and hopeful for a successful pregnancy in the future (even though there is a 70% chance that I will have ICP with future pregnancies); however, at the same time, I was saddened when I learned there seems to be more steps that could have been taken to save my baby.
The biggest issue with ICP is that more research needs to be done to create a better protocol for treatment. I believe the doctors were treating me exactly as their medical books tell them, but after learning more from other women who have experienced successful pregnancies following a loss to ICP, I feel that healthcare providers need to know more. There are women with whom we have spoken who had low level bile acids, much like mine, when they were first diagnosed with cholestasis. With ICP being a progressive condition, their levels continually climbed like mine. Continuing to check these levels when a woman has severe itching is essential in early diagnosis of ICP. Some women have expressed that they believe they lost their baby during a bile acid spike. I had not had my levels tested in two weeks, so who knows how high my levels were and if I had had a spike in bile acids or not. After speaking with different doctors I have learned that some believe these levels are associated with stillbirth while others do not. I believe this is one area in which more research is needed. Many women with whom I have communicated have had to beg to be checked even with the most common sign, severe itching, present. We have gone on to learn that the reason the bile acid lab is a send-out and cannot be performed in house (causing long waiting periods) is because there is not enough demand for the lab. This means we do not have enough doctors testing for ICP. This also makes me wonder how many women who have stillbirths and have no idea why they lost their baby have really lost their baby to ICP. Maybe they had ICP and was never diagnosed. While this condition may be rare, I do not believe that it is as rare as it is often reported, but I believe that the rarity may instead be in how often this condition is diagnosed.
We have also learned of the medicine Ursodeoxycholic acid (Urso). Urso is believed to replace toxic bile acids with good bile acids, and, therefore, lower the toxic level of bile acids. After speaking to different doctors, we have learned that some doctors believe this medication only helps reduce the itching by lowering the bile acid levels. They believe there is no correlation with how high the bile acid levels are with stillbirth. On the other hand, some of the women who have lost their babies to ICP and then went on to have successful pregnancies believe when the Urso lowers the bile acid levels that this indeed helps protect the baby. We are unsure if this is the case, but we do believe more research needs to be done as to if the lowering of bile acid levels helps prevent stillbirth. I was never prescribed Urso, or even told about it. We have learned that many doctors do not prescribe Urso unless your bile acid levels are extremely high, while others prescribe Urso as soon as there is a diagnosis. I can’t help but wonder why my doctors said there was no need to continue to take bile acid labs and that the labs would not change my treatment plan. My bile acids could have increased dramatically within those last two weeks. It is just frustrating not knowing if there was a spike in my levels and even if there was a spike if doctors would have made the decision to deliver Judd immediately. And I can’t help but wonder if I had been prescribed Urso , if the outcome would have been any different.
Early delivery is the other key plan of action. This was planned for my pregnancy, but we still missed it by six days. I believe early delivery is very important, and that more research needs to be done on the effect of high bile acid levels and a spike in those levels especially during the third trimester to better know if and when immediate delivery should occur. I have read of a lot of women who lost their babies around 36 weeks and many are now saying that 36 weeks seems to be the turning point for ICP.
There are a few things that need to happen to help prevent another family from losing their unborn child to ICP. One would be to increase the demand for bile acid labs. How do we increase the demand? We need to make women aware of ICP, so that they can push to have their bile acids checked during their third trimester. The other thing that needs to happen is that we need to encourage doctors to be receptive to all this information and to the experiences of women. This is being done by bringing about ICP awareness. The founder of the ICP awareness group has plans to attend a Maternal Fetal Medicine conference the first of the year (2019) to present this information. Although all of this is important, the most important is more research. I am telling my story to bring awareness of ICP and to help avoid another family from having to deal with the horrific loss of a child to cholestasis, and, therefore, we are another step closer to improving the protocol for treatment of ICP.
Judd didn’t get a chance to pave his path and make his own legacy, but I am determined to find a way for him to still do so, and I believe this is it. We are going to save as many babies as we can by sharing our story and bringing awareness. And as for us, we will hold Judd in our heart until we can hold him in heaven.