Donna Benavides, Florida
June Awareness Month is one that is filled with a lot of emotion for me. This Sunday, June 10 is ICP Awareness Day. This is the day my son Jorden passed away from Intrahepatic Cholesatsis of Pregnancy 15 years ago. My journey has been a long one and it brings me peace knowing that his life lost has saved so many ICP babies and will continue to!
Although my son’s Fetal Death Certificate was issued in 2003 from the state of Florida, I requested an original copy this year, 2018. Last year I learned of the 2006 Katherine’s Law in the state of Florida that allows for the creation and issuance of the Birth Certificate resulting in Stillbirth acknowledging the babies lost. I finally received copies of both for my records, which really brought a portion of closure I had not yet felt.
The reason I share this all with you is for everyone to understand why I have been involved and continue my passion to help save to lives of ICP babies. My intentions are for no other Mom to have to live through such a heart and life altering loss. Please know that without each of the volunteers and members of the community, none of all the work done so far would be possible.
I would like to thank all the volunteers of the ICP Care team. I want you each to know that you all have helped prevent countless women from loss and having these certificates instead of their loved child with them. Again, thank you so much!
Amanda Crowe, Michigan
My first pregnancy I didn’t know what was “normal”. My baby was very inactive, but I didn’t know any different. By 25 weeks along I reached out on Facebook complaining that my hands and feet were itching, a burning itch, and it seemed very off to me. The itch couldn’t have been terribly intense because I allowed myself to be talked out of worrying by multiple friends and family telling me “some itching is normal”. In fact, I let myself believe that so much I completely forgot about it until a Facebook time hop three years later. That time hop frightened me terribly having confirmation of what I already knew and of what could have gone wrong! My first pregnancy, just like my second was an Intrahepatic Cholestasis of Pregnancy; this one, however went undiagnosed and untreated because the itch was mild and I let people tell me to ignore the itch. Please, don’t ignore the itch!! A few weeks later, 33 weeks, I went in for my routine checkup and was almost sent directly to the hospital for blood pressure. I was asked about baby’s movements and I told them it was the same as ever – which was true, I just didn’t realize at the time that just because it was the same didn’t mean it was much, much too little! I was sent home on bed rest with frequent blood pressure checks. I started twice weekly being checked for preeclampsia both in blood and urine, I passed every test with flying colors. Not only did I not have preeclampsia I was also nowhere near developing it. My doctor was puzzled. My body was slowly going into a deeper level of shock each day and there was no obvious answer. By that time, I had forgotten the itchy hands and feet and anytime it flared back up I assumed it was blood pressure related.
In my 34th week I was getting periods of intense swelling of my hands. They were hot, itchy and balloon like. I would also get periods of vertigo and feeling like I couldn’t focus my eyes correctly. Still absolutely clear of preeclampsia. Still with zero answer to why my body was panicking. At my next appointment I was 35 weeks, my OB did an NST and realized how little the baby actually moved. I was quickly moved from the NST to an ultrasound. In the ultrasound my baby wasn’t moving. We could see his heartbeat and practice breaths on occasion but other than that the baby just floated inside me. I did a shot of juice, cold water, moved the table at an angle, nothing moved the baby. Eventually the ultrasound technician started shaking my belly and we could see him respond just by flicking his hand. The office was very good at staying calm, I was terrified but left feeling ok about it. Within a few hours my OB called to tell me we needed to induce as soon as possible which would be that weekend at 36 weeks. The ultrasound had shown that my placenta was aged past what is expected of a 42-week pregnancy. Still no reasoning for it, but it was happening and it was happening very ferociously. When I went for my induction the nurse and doctor who started the medication made several comments that I must have wanted a baby in the NICU for willingly being induced so early. Since I had no actual diagnosis the ultrasound was the only reason to be inducing. It was a hard labor but late the next night my son was born! The delivery room had NICU nurses waiting to take him but amazingly he was strong and healthy! IN fact, he was dubbed the smallest but loudest baby at the hospital during our three-day stay! A few hours later, early in the morning our pediatrician came to give his first exam on the new tiny baby. He started looking him over, focusing on his hands, his fingernails, strange spots I wouldn’t think they would put much effort into detailing. Then he asked me what exactly was going on for causing the induction. I told him about the blood pressure and ultrasound and lack of movement. I’ll never forget what he told me next. “This baby only had a few days left to survive in you, he certainly would not have made it through the week.” I was recovering very hard and for some reason I never asked him to elaborate, I was just glad he said the induction was completely correct and necessary. We moved on, we had a rough few beginning weeks as most parents with early babies do but life progressed.
Six months later I was pregnant with my second. Again around 25 weeks I was itchy, this time it was my wrists and face. The face is hard place to ignore constant itching! The diagnosis for that pregnancy is a story in its own but for this story the important part is I was diagnosed and started treatment by 28 weeks with ICP. In the diagnosing phase I had to go over a detailed medical history which is when I realized that years before being pregnant I found out I couldn’t take birth control due to my liver enzymes being raised and making me very sick. It was also in that phase that I had to recount my first pregnancy quite a bit and that’s when it became very apparent I never tested positive for preeclampsia because I didn’t have it, I had Intrahepatic Cholestasis of Pregnancy. It went untreated for a very long time because I never mentioned the itching and by the time I would have thought more about it I had other symptoms that I could blame it on. My bile acids were never tested. My liver enzymes never elevated in my second pregnancy either so bile acids were the only test that would have shown my liver being affected, but they are not routine tests – in fact for my second pregnancy the office had to have the directions pulled up on the computer for how to store and file my blood as they were drawing it because it is so uncommon to have run. The moral of this long story is to never ignore the itch! I came within days of losing my first son because I allowed myself to ignore the itch, I never got the lifesaving prescription of URSO and I was never properly monitored for a baby in an ICP womb. I now encourage any itchy pregnant woman to get her bile acids checked, if it comes back at a one there’s no harm caused and if it comes back elevated you just may save your baby’s life. Thank you ICP Care for saving my 2nd born son’s life with all of the dedication!
Lyndsey D’Errico, Florida
In December 2013 I recall telling a friend I may be pregnant because my hands were itching and I seemed to remember that my hands itched in my two previous pregnancies. Sure enough, I was! I don’t recall the itching again until I was 35 weeks pregnant. It was insane, all over my body, keeping me awake at night and miserable in the day. One frantic evening I searched the internet for ideas on why I may be this itchy and the ICP Care website came up. What was described was exactly what I was experiencing. I joined the Facebook page and asked all my questions. At my next appointment I mentioned the itching to my OB. I didn’t have to mention Intrahepatic Cholestasis of Pregnancy because they immediately suspected it and tested my Bile Acids. They came back positive but not super high (they didn’t tell me the exact number). I was put on Ursodiol and scheduled for induction at 38 weeks.
The day came and things seemed to be going slow so they moved me out of delivery and to a ward. The midwife said she expected to not see me back in delivery until the next day. Less than an hour later my contractions were 3 minutes apart but I was coping well with them. I got up to go to the bathroom and felt a gush. Thinking it was my waters breaking, I looked down to see blood everywhere. I had had a placental abruption and was rushed for an emergency c-section. My beautiful Warrior Baby, Cole was born healthy in September 2014.
We moved from Ireland to the USA in 2015 and when we felt settled, we decided it was time to complete our family and have the fourth child we had dreamed of. We didn’t have to try… our baby was conceived straight away and we were delighted. I researched OB’s that were aware of ICP and the correct protocol, as I know many are not, and settled with one that convinced me of this. At 5 weeks I started to itch. Believing it may be psychological, I waited for my first appointment and had my bloods drawn. My Bile Acid levels were fine but they checked periodically as the itching continued and progressively got worse. At 27 weeks, I was finally diagnosed with Bile Acid levels of 11. I was put on Ursodiol and my Bile Acids never rose higher. I was given weekly NSTs and weekly BPPs and scheduled for delivery at 37 weeks.
At 35 weeks baby failed his BPP for not taking practice breaths. The technician struggled to get him to move so that she could get the results she needed but I was assured everything was okay, even though I was panicking. The following week, he failed again for the same reason and again I was assured he was fine. That night my husband and I toured the maternity dept. of the hospital. I asked whether the baby was taken away after a c-section because that is what happened with Cole. The lady said no, that they would give the baby straight to me and never be taken out of my sight. I fought back tears of happiness because I had been so sad that I didn’t get to be with Cole after he was born.
The following evening, on a Wednesday, I got up from the dinner table and commented that I felt some slight cramps. Nothing that I hadn’t felt before, so I got the children to bed and settled down for the evening. The cramps kept coming but they were not severe or regular. We turned off the TV and headed to our room and I pointed out that this time next week, we’d be so excited… our c-section was booked for the next Thursday morning. I sat on the bed feeling a little more uncomfortable so decided I’d go and watch TV again for a while. I sat down and about two minutes later felt a gush. I jumped up and looked down to see history repeating itself. This time though I was not in the hospital and by the time the ambulance crew got me there and after a lot of searching for my baby’s heartbeat, we were subjected to the phrase that no parent ever wants to hear “I’m so sorry. There’s no heartbeat.”
We were told the focus now was on saving my life and I was taken straight to surgery, where my sweet and beautiful son Gabriel was born at 36 weeks on February 9th 2017. In the far too quiet operating room, he was handed to me, just like I had hoped he would be the day before. Perfect in every way other than that he was still and quiet. It was after midnight and I slept with him in my arms, waking in the morning to his beautiful face. The hospital sent a photographer to capture some beautiful pictures of Gabriel with his family and we were able to keep him with us for a couple of days.
The hardest thing I have ever had to do was to leave my son behind when I was discharged from the hospital. We don’t know whether ICP caused the placental abruptions but the two pregnancies where I was diagnosed with ICP ended the same way. I never had my Bile Acid levels tested at the end of either pregnancy, so we don’t know what they were. We have had differing opinions from doctors with some saying they don’t know if ICP was the culprit and a specialist saying it absolutely was.
When I look at Cole now, I realize how very lucky we are to have him. As far as Gabriel is concerned, we love him and miss him and feel the only right way to parent him now is to spread awareness of this horrible disease that we believe took him from us. Never, ever ignore the itch! All it takes to diagnose ICP is a blood test. A blood test that could save your baby’s life.
Andrea McConne, Australia
I was in my first trimester with my first baby in 2014. This had already been a stressful time with fertility treatment and a previous miscarriage at 11 weeks, so we were already concerned parents with a long road to travel.
I was experiencing some incredible itchiness of a night time and mentioned it to my fantastic OB at my 12-week appointment. He wasn’t concerned and luckily I hadn’t googled anything!!!! He asked me some routine questions about problematic pregnancies for my mum and sister but I didn’t think anything of the conversation, he did say he would do some additional bloods to rule anything out but he just thought that it was normal stretching skin. Although at this stage the itch was only across my chest and mostly of a night time. We came to realize that he was clearly a very vigilant and well educated in ICP. At 14 weeks I received a phone call from him that I did in fact have ICP with a bile acid of 12, I was placed on URSO straight away and stupidly spent far too much time on Google. Luckily I found the ICP Care Facebook support group and was able to calm my nerves by asking a lot of questions.
After much argument with the private script system in Australia I was able to get URSO for $38 for 3 boxes instead of $140, seeing as I was only 3 1/2 months pregnant and taking 4 bills a day this was a big financial relief. A much appreciated coordinated effort with lots of phone calls made from both my OB and Pharmacist who lost their cools several time with the system that gives permission for private script approval in Australia. I still have boxes of URSO stashed away just in case 😉
I am lucky to say my itch remained bearable yet moved to my stomach and sometimes my hands, although I feel that I never got it as bad as some others. Keeping cool was key for me and lucky I was having a winter baby, I would never chance a pregnancy in an Australian summer if I can help it. I found moo goo creams have some relief and also hydrogel breast pads placed in the fridge also assisted, anything that kept my skin cool allowed me a little more relief and therefore sleep.
The highest my levels ever went were 14 with a few weeks left to deliver, my OB continued to be vigilant and developed a plan we were really happy with, blood tests monthly and fortnightly for bile and liver function, growth scans at every visit, a few CTG’s thrown in towards delivery, growth steroids for Bub and a c section delivery (my choice) at 37 weeks with back up bloods ordered and my placenta sent away for investigations. Our daughter Audrey was born without complication, a good size at 6 pound and without any of the respiratory issues we had prepared ourselves for.
Even with a surprisingly lucky run in with ICP my placenta still showed what was described as ‘black/dead spots’ something that chills me still as I was considered so well ‘controlled’.
My LFT and bile acids had returned to normal by follow up tests at 4 weeks post-delivery.
We were so lucky with our ICP story, I know many are not as lucky as we were and I feel that it was purely the knowledge and experience of our OB who made our journey such a positive experience. We are currently 12 weeks pregnant with number 2 and unfortunately our original OB has now retired but we seem to have found a new OB that will be just as vigilant and has agreed to a similar plan as our previous doctor.
Christa Jensen, Utah
At about 30 weeks, I began itching and asked my doctor about it. I was itchy everywhere. He told me to avoid hot baths and take benedryl. At 33 weeks, I went to an all you can eat buffet and that night I could not sleep because the itching was so bad. Finally about 3AM, I went online searching for itchy skin during pregnancy. As soon as I read about Intrahepatic Cholestasis of Pregnancy on ICP Care / Itchy Moms I knew that’s what I had.
I called my OBGYN and went in for a blood test. They put me on Ursodeoxycholic Acid and said the results would come back in a few days. They called a few days later and confirmed the diagnosis and my BA level were at 37. I came in for a non-stress test and the baby was not very active and I started having contractions. I was sent home but advised to stay off my feet. That night I went into labor at 35 weeks. I went to labor and delivery and no one had heard of ICP. They gave me a shot to stop labor and sent me home. The next day I went into labor again. I went back to the hospital and finally was admitted. Many hours later Austin was born weighing, 5lbs 11oz. As soon as he was born he stopped breathing. They had to call a “code blue” and call a newborn life flight team to airlift him to another hospital with a high level NICU. He was diagnosed with Respiratory Distress Syndrome; he was put on a ventilator for 5 days. He also had an infection that required antibiotics, and jaundice. For me the itching went away right after giving birth. After 14 days in the NICU and 11 days at a children’s hospital with RSV, my baby is now older and doing great. Although it was the hardest thing I have ever gone through, I am grateful to have the education, and support of such an amazing website.
Erica Conaty, New Hampshire
All I ever wanted was to be a mother, so when I saw those two lines on the pregnancy test I was beyond thrilled. I was so excited for everything to come. Made it through my first trimester with little to no morning sickness and considered myself extremely lucky. When I was 17 weeks we found out our little angel was a boy. Life couldn’t have been any better for us. Two weeks later I noticed I was itching a lot. Didn’t think much of it; pregnancy had dried out my skin so I thought it was normal. It got to the point that I was covered in bruises and scabs from scratching so much. I knew that couldn’t be normal so I called the doctor. My OB immediately drew blood and sent it out for analysis. To this day I am so grateful that she knew what she was doing. She told me not to worry and that everything was probably fine. The day I turned 20 weeks I got the phone call. She told me I had Intrahepatic Cholestasis of Pregnancy (ICP). We made an informational appointment for the following week and she sent over a referral to a Maternal Fetal Medicine doctor. Of course I immediately jumped on my old pal Google. What I was finding was terrifying. I kept reading things like “high risk” and “stillbirth”. My head was spinning. I went from my normal happy pregnancy to this madness. After my appointment with the OB I felt a little better. She explained to me that my liver wasn’t functioning correctly; my bile acids were building up and that’s what was causing my itching. She started me on medication to keep my Bile acids down. I quickly found the ICP care website and joined the support group. After reading many testimonials I realized how truly lucky we were that my OB was right on board and did everything she was supposed to. We call her my sons guardian angel. Through all those testimonials though I couldn’t help but come across those of mothers who had lost their babies to this. My heart did and still does go out to them. I was so worried about my baby. I was told that we would have to induce labor at 37 weeks to reduce the risk of stillbirth. I can’t even explain what goes through your head when you find out something like this. You’re constantly in a state of worry. Will my baby make it? Will 37 weeks be too early for him? Will he need to spend time in a NICU? What did I do to make this happen? All the information, all the doctors none of it could make me feel any better. All I ever wanted was to be a mother and now my own body was jeopardizing the health of my baby. I felt like a failure. On top of all the stress was the constant itching. I spent 17+ weeks wanting to rip my skin off. I couldn’t stop scratching. At my lowest point I broke out my dogs’ metal hair brush and went to town. It feels like fire ants crawling under your skin. Nothing helps the itch, nothing makes it better. It kept me up at night, it made me lose my train of thought during the day. It was unlike anything I’ve ever experienced. People would stare at me weird when I went out because I was covered in scratches and scabs and itching constantly. It was embarrassing and made a bad situation even worse.
At 30 weeks we started a more intense monitoring of the baby. I had biweekly appointments with the Maternal Fetal Medicine specialist to do a growth scan ultrasound and make sure the baby was progressing well. I had weekly non-stress test at my OB to make sure he was moving around enough, I also had a weekly ultra sound at my OB to make sure his lungs were developing and practicing his breathing the way he was supposed to. Between the itching, lack of sleep, and impossible calendar of appointments I decided to take a leave of absence from work. Finally, the day came that I was to be induced. I went into the hospital at 6pm. They started me on a cervix relaxer called cervadil. I was already having small contractions of my own so that kicked them up a few notches. At 11am the next morning they broke my water and started Pitocin. I’m sure I don’t have to explain how painful labor is, but man it hurts. At 5pm when I was only 7cm dilated my body decided it was time to push, as much as I tried I couldn’t stop it. After 2 1/2 hours of pushing my little itch was born. Jace Ezra Caron was 20 inches long and 8lbs 6oz. He was breathing like a champ and needed no extra help what so ever. It was such a relief to finally have my little boy safe and sound in my arms.