Here is our year in review. Leave us a comment at the end to let us know what you think we can do to continue raising awareness about HELLP Syndrome:
We are just a few weeks shy of our one year anniversary. We launched this site in the middle of January at the beginning of this year. I had no idea that it would become such a phenomenal source of information. So many of you brave women have shared your stories or the stories of those who couldn't be saved. Thank you from the bottom of my heart! Thank you to everyone who has ever shared, liked, or commented on a story, liked our page, shared our site, bought one of our products, participated in our campaigns, or talked to someone about HELLP Syndrome. You are the reason that this site even runs!
Here is our year in review. Leave us a comment at the end to let us know what you think we can do to continue raising awareness about HELLP Syndrome:
We want to make 2015 even better. I would love to know how you think What the HELLP? can do to continue raising awareness about HELLP Syndrome. So comment and let me know! Thanks again for everything you have done and continue to do!
ABOUT KIM: Stay-at-home mom, married to my college sweetheart, living in West Virginia.
I was misdiagnosed at 23+1 weeks, but officially diagnosed at 26+1 weeks and delivered via emergency cesarean section that day. I had never heard of HELLP before I was diagnosed. It was not in the pregnancy book I was reading. This was my first pregnancy.
I had a pain "in my chest", which I now know was upper right quadrant pain. That was really the big symptom that sent me to the hospital twice. At the hospital, they determined that I had elevated liver enzymes and my blood pressure was high. I also had protein in my urine. Luckily, my platelets were still high enough. My kidneys had begun to shut down the day I had my daughter. I never needed a blood transfusion and my liver never ruptured. I had normal blood pressure the entire pregnancy until I delivered. I had only gained 8 lbs.
At first, with the gallbladder attack diagnosis, I wasn't too scared. The morning of my c-section, I was terrified. I don't remember the OB explaining what my diagnosis. He never actually explained it all to me.
On March 29, 2014, my life changed forever.
Three weeks prior, my husband had driven me to the local ER with chest pain. It started with a feeling like heartburn, but Tums wouldn't relieve it. No position was I comfortable in. At the local ER, tests were done, but they decided to transfer me to the cardiac specialty hospital in the city. They thought something was wrong with my heart.
At the cardiac hospital, more tests were run, but no diagnosis was made other than "it may be the start of preeclampsia." They found sludge in my gallbladder.
I was then transferred to triage in the nearby Women's and Children's hospital. After a short stay there, the pain had completely gone and my blood pressure had returned to normal. I was diagnosed with a gallbladder attack and given instructions to see an OB Monday (I had been seeing midwives).
In the next three weeks, I saw my OB, then consulted a general surgeon about my gallbladder, and then went back to the OB. Everything seemed to be going well again and I felt fine.
March 29, 2014, a Saturday, I woke up early with a funny feeling. I thought that maybe it was hunger pangs, so I tried to eat. I couldn't. I couldn't get comfortable and the pain started. I knew it was another "gallbladder attack". My husband was hesitant to drive me to the hospital, because they had told me that there was nothing they could give me for the attacks. I finally convinced him that I needed to be monitored. We drove 45 minutes to the Women's and Children's hospital. I walked into the hospital by myself. Since it was early and on a weekend, the hospital was quiet. Admissions seemed to take forever. I finally got to triage and that's when everything started going crazy. My blood pressure was ~230/170. Nurses were scrambling and my OB was already on the way. This is when I realized that this had to be more than a gallbladder attack. I was sent for an ultrasound and it was determined that my baby had reverse flow and wasn't moving around much. The OB said "we have to take the baby." I lost it and broke into tears. I was immediately prepped for surgery and was lucky enough to receive spinal anesthesia.
I didn't get to see my daughter in the delivery room. I didn't get to see her for almost 3 days. She weighed 1 lb 4.5 ounces and was 12.25 inches long.
After my surgery, I was on magnesium and began to swell from the fluids. My kidneys weren't working properly and my blood pressure was still high. I felt like I was completely out of my mind.
I stayed in the hospital for 8 days. I was in shock and an emotional wreck. A specialist had to be called in to get the fluid off and to get my blood pressure down with the right combination of medication. I went home on 7 pills a day for blood pressure. 7 months later, I take 1/2 a pill.
I still have some PTSD from my experience. My daughter spent 4.5 months in the NICU, but is now home on oxygen and monitors. It's a miracle that we both survived. I want to help spread awareness.
ABOUT MEG: I used to describe myself as an artist, a runner, and a teacher from upstate NY. Now, I am Charlie's Mom. I will never take my son for grated and while I still run, teach, and create artwork, my son is my world.
I had never heard of HELLP syndrome before. Overall, pregnancy seemed so simple and I was completely unaware of the risks. I was 31 weeks pregnant when I delivered my son via emergency c-section due to HELLP syndrome.
At first, I only experienced neck and shoulder pain, which later I found out was due to hydronephrosis. My kidneys were shutting down due to my high blood pressure. After my son was delivered, my blood pressure did not return to normal. Emotionally, it was all so overwhelming. Within 24 hours I had a baby that we were not ready for (we had 9 weeks until his due date) and I was given medication after medication to get my blood pressure down. My vitals were taken every four hours, checking the proteins in my urine, my platelet count, my blood pressure, and my Ten days passed before I was able to be discharged on blood pressure medication with my numbers in check. In hindsight, I had bloated up with water weight within days of going to the ER. Overall, it was a very sudden onset.
I was 31 weeks pregnant for my first child when I experienced excruciating shoulder and neck pain. I had just been to the OB/GYN a few days previous and all was fine. I thought I needed to go to a chiropractor and whatever was bothering me was completely unrelated to my pregnancy. I ignored the pain for almost a day then it became unbearable! My family convinced me to go to the hospital so we headed out. At the Emergency Room, my blood pressure was 256/178. Seeing that sent the nursing staff into a frenzy! I had never had a history of high blood pressure so I was clueless as to how alarming those numbers were. The ER doctor whisked me away into get a chest x-ray. He said my aorta was on the verge of tearing and my baby had to be delivered. I was completely astonished! I went in for shoulder pain and all of a sudden my baby was being delivered via emergency c-section.
I went to the ER at 9:30pm. At 1:30am, my son was born. I remember having a conversation in the delivery room with my husband about what we wanted to name our baby, then I lost a few days. The doctors tried different medications, but nothing seemed to get my blood pressure down. They explained that with pre-eclampsia, after delivery the mother's blood pressure returns to normal. With me, this was not the case. My family and I met with my OB/GYN and he explained "there was nothing more they could do". Seeing my family's faces after hearing those words was devastating. What was going on? Within days, I went from a healthy woman to being told I was dying. I had a son who I didn't know if I would be there to raise!
This is where the power of motherhood steps in: My Mom, called every doctor, PA, and nurse she knew and decided that because there was no longer a baby inside me, I did not have to be treated by OB/GYNs. A cardiologist came in to see me and gave me the full gamut of blood pressure medications along with a nitro patch to keep me from having a heart attack. This did the trick! Once my blood pressure was on the right track, the rest of my symptoms and levels sorted themselves out as well. After ten days of being in the hospital, I was discharged and able to concentrate on my baby in the NICU.
My son was in the NICU for 42 days and I was on blood pressure medication for 6 months. It has been three years and we are both happy and healthy. The doctors have told me that I cannot have any more children. Every day people ask "When are you having another" or "I am sure your son would love a sister". These innocent comments wrench my insides. I relive that nightmare that was supposed to be "the happiest day of my life". I am happy to have my son and be here. I am thankful that my mother was my advocate and I will always be a voice for my son. I find peace in my pain by hoping that someone will hear my story, listen to their body, and not become a negative statistic for HELLP syndrome.
ABOUT DEEANNE: I'm a mom of three, a poet, blogger, community theater enthusiast, and secretary/office manager for a TV/Radio ministry program.
I developed HELLP along with pre-ecclampsia during my first pregnancy in 1992. I was approximately 23-24 weeks when I was diagnosed and entered the hospital. I had never heard of either HELLP or pre-ecclampsia before that time.
In the days before I was diagnosed, I was exhausted, emotional, and stressed out. I remember the night before I went in the hospital, crying and wishing I could get put in the hospital so I could rest. I was extremely puffy and swollen, even in my face and hands. I felt headachey and just generally ill.
I was 20 years old and pregnant with my first child. I was in nursing school full time and driving to campus and back, a 40 minute one-way drive every day. I wasn't married at the time, and although my boyfriend was there, I was dealing with the stress related to being unmarried and pregnant, due to church things.
I was approximately 23 or 24 weeks, and went in for a regular appointment with my doctor. I knew I was extremely puffy and just generally felt unwell. The night before, after church, I had sat out in the car and cried from sheer exhaustion and wished that I could be admitted to the hospital so I could rest.
When I woke up the next morning, my swelling was just unbelievable. My face was so puffy. I wish I had known what a significant sign that was. I do now, but then I didn't. I had an appointment at my regular doctor that afternoon, but even if I'd gone straight there when I woke up that morning, it probably wouldn't have made any difference.
When I went to my appointment, I had all the markers. My blood pressure was high and my urine showed significant protein. They told me to go straight to the hospital, which was right across the street, because I needed to be admitted.
It was Monday night, Nov. 9. I was admitted to the hospital and they continued trying to treat and monitor me. I don't think they started any IVs when I first got there. I lay there in our small local hospital for a couple of days and soon had started having upper gastric pain. They kept asking me if it was gas. Finally, I guess my local doctors decided they didn't know what was going on with me, (or maybe they knew all along, but thought they could handle it) and they called a specialist in a larger teaching hospital about 100 miles away. The specialist said, in effect, "Put her on an ambulance and get her up here, NOW." They started an IV of magnesium sulfate and sent me from Ardmore to Oklahoma City in an ambulance, and that was the first time I ever got any IVs.
I don't know how high my blood pressure was at the time, but I'm thinking my bottom number was at least 100 or 115. I know that my mother, who rode up there with me in the front seat of the ambulance, claims hers was higher.
They admitted me to OU Children's Hospital, and continued treating and monitoring. They couldn't find any good veins for IVs because I was so terribly swollen. They were searching in the tops of my feet, if that gives any idea. Also they considered starting a line in my neck. I was incredibly thankful they didn't have to do that.
All this time, to the best of my knowledge and recollection, the baby was fine. She was not as big as she should have been, but I don't think they thought she had any other serious health problems. If they did, I don't remember them telling me. Unfortunately, the years and the illness erased a lot of the details.
They began doing all the tests, and I still had sky-high blood pressure, still had protein, still had upper gastric pain, and now they also knew I had HELLP. They did a scratch test to determine clotting time, and a scratch that should have clotted within a minute took 22. C-section was ruled out, and delivery was a must. They gave me medicines to start contractions, tried to start readying my body to do something it wasn't supposed to do for another 3-4 months.
At one point, they were trying to dilate my cervix using something I remember them calling "mechanical dilators" which they said would be painful so they gave me morphine or something. I remember waking up from my medicated haze, legs in the stirrups, lifting my head, and there at the foot of my bed was practically an entire medical school class, observing this procedure because I was at that time, an incredibly rare case. I just closed my eyes and dropped my head back to the pillow and tried not to care.
I wasn't making progress, and they decided they needed to rupture my membrane. They had put monitors on me and on the baby, and I didn't know at the time what they knew, that once I had my membrane ruptured, the cord, which was ahead of the baby, would probably become compressed as the fluid rushed out, and as she moved down toward the birth canal, and she would probably die. They came in and turned the volume down on the monitors, but I didn't know that was why until later.
They had asked me if I wanted to be enrolled in a study they were doing with the use of surfactant, a substance premature babies don't have yet in their lungs that makes them expand. I gave them permission to use the baby and give her this surfactant if she was born with any attempt at breathing.
My poor mother had finally left the hospital to go shower and rest, and they called her back because they were taking me to delivery. I couldn't push. I didn't know what I was doing, didn't know what it was supposed to feel like, and I was sick and exhausted and scared. The nurse helped push down on my stomach and all I remember was that my mom's surgical suit was white and the rest of them were blue, and her green eyes stood out. I thought she looked like an angel.
It was November 15, 1992. Finally they managed to pull the baby out, and I remember the doctor putting her face right in front of mine and saying, "Baby has no heart rate, no breathing effort." Ok, then.
They delivered the placenta, which I remember hurt worse than the baby. (Because it was actually bigger.) Katrina DeAnne was 11 inches long and weighed 13 ounces. She seemed to have suffered some significant trauma during birth because her head was misshapen and squishy. I think they told me she had some water on the brain or something.
They fixed me up and wheeled me back to my room, and here I was, holding this oddly colored, deceased baby. I felt embarrassed. I felt that people were looking at her and seeing her as scary or disturbing. I didn't hold her as long as I later wished I had, because I thought people would think it was weird to spend time holding a dead baby. I wish now I'd been a little more sensible about that.
I stayed in the hospital a few more days, and I don't remember any of my numbers- my blood pressure or my platelets or how fast they returned to normal. I just had to go on with my life. I had to quit nursing school because they won't let you make up clinicals and I had missed some. I finished the semester of my regular non-nursing school class and life went on.
I have since been pregnant twice. The next time was with twins, who were born healthy and perfect a year and two weeks to the day after I lost Katie. Their baby brother was born in May of 2001, and he too was healthy and I had no serious problems with either pregnancy. But my experience with Katie will always be in my mind.
ABOUT ERICA: My husband James and I live with our son, George, and miniature daschaund, Jack in Bowling Green, OH. We are high school sweethearts and met on a blind date our senior year. My husband served as a US Marine for five years and I have a degree in early childhood education but am currently a stay-at-home mom. We are so blessed to have a happy, healthy baby boy!
I was diagnosed with HELLP Syndrome at 36 weeks. I had never heard of HELLP Sundrome before.
About two weeks before I was diagnosed I had horrible pain under my rib cage, I of course attributed this to my little guy being up under my ribs. I went in for a scheduled OB appointment and had extremely high blood pressure and therefore was sent to the hospital to be monitored. My protein level in my urine was over 600 (normal levels are under 159). I had to have an emergency c-section but thankfully my son did not have to be sent to the NICU and was perfectly healthy being four weeks early! I felt pretty scared initially because everything happened so quickly. I was thankful to have amazing doctors and nurses caring for me and was surrounded by the love and support of my family which in turn brought me peace.
ABOUT SADIE: I'm a mostly stay-at-home-mom who works two days a week (mostly for the interaction with other adults!) My husband and I live in Dubuque, Iowa and are committed to spreading the word about HELLP.
I was diagnosed with HELLP at 35 weeks 3 days. I am also a well-controlled Type One diabetic which may have increased my risk for HELLP. I had never heard of HELLP prior to diagnosis. When I was diagnosed, my blood pressure was normal, and I had only trace amounts of protein in my urine. My blood pressure did not increase until after I was admitted into the hospital.
I had been concerned about my sudden weight gain (I was swollen everywhere), intense right upper gastric pain, and shoulder pain for almost two weeks before diagnosis. The doctors kept telling me the pain was from my son's feet pushing into my ribs and I was told I should "be happy I wasn't 8 or 9 months pregnant in August because those women are REALLY swollen!" After many phone calls, they finally agreed to see me at the OB office.
They initially believed it was my gallbladder and scheduled me for an ultrasound the next day. I was so uncomfortable I could barely function, so thank goodness my husband had the sense to pretty much demand lab work. Within 2 hours, I was in labor and delivery being induced. I can still remember googling "HELLP" after the nurse called me and told me to get to the hospital immediately as they believed I "may have something called HELLP syndrome." Three symptoms down the list, and I knew for sure that was definitely what I had.
I was blessed to deliver a mostly healthy baby boy on October 29, 2013. He had a 7 day stay in the NICU. He had to be intubated briefly when born as he was not breathing, probably due to the pain medication I was given. For a long time I struggled with the fact that his birth was nothing like I had anticipated it to be. I didn't get any of the photos that my friends have with their children just moments after entering the world. I didn't get to hold my baby for over 24 hours because of the condition I was in. HELLP was emotionally draining, but after reading the experiences of others, I became so grateful that though his birth didn't go as planned, I was still able to hold my baby boy, hear his first cry, and bring him home with me. There are so many others who, unfortunately, aren't able to say that. Though I wish I didn't have to experience HELLP at all, I know it could have been a much worse outcome than what it was. We consider ourselves very blessed, and we will know what to watch for next time.
I'm Alisha, and my big sister and best friend died of HELLP Syndrome in August 2013. Share your story with us. Stay updated by subscribing to our blog below: