I had my first pre-natal intake with my new doctors office after our move down to South Georgia on June 9, 2010. I was in the middle of my 36th week of pregnancy and things had been going pretty well. Or so I thought. The nurse did a blood pressure check, and even though the only physical movement I had done in the last twenty minutes was walking to the back of the office, my blood pressure was unusually high. The nurse took me back and wrote down my medical history, then rechecked my blood pressure. It was slightly lower, but still very high. The nurse went to discuss the results with the OB’s in the office, leaving me to sit in the room, hungry (I hadn’t eaten lunch yet) and wondering what in the world was going on. As I wrote my husband a letter (he had just left for Basic Training), the nurse came back in. She said she was looking for a doctor who would take me in that day, but no one had openings for the next two weeks. She was called out of the office, then walked back in a short five minutes later saying that Dr. Sylvester had agreed to check me during her break. She saved my life.
She asked me a few questions about how I had been feeling, asked if I had been seeing “floaters” in my peripheral vision, and I still had no idea what was going on. Once she was done with her exam and, after a quick ultrasound to measure my son, she sent me over to the labor and delivery department to be monitored for pre-eclampsia. At the L&D department at Winn Army Medical Hospital in Fort Stewart, Georgia, doctors ran more diagnostic tests, hooked me up to monitors, and left me to rest for the night. I spent a very restless night wondering what in the world was going on. What exactly was pre-eclampsia? Obviously it had something to do with my blood pressure, but I was clueless as to what it meant for my health and the health of my son. My son was squiggly and squirmy, still quite content in his confined space.
The next morning, things took a turn for the worse. As I picked up a fork to eat my breakfast (I still hadn’t eaten in 24 hours), my doctor came in. He took away my food, and told me I was in a dire situation. Not only did I have severe pre-eclampsia, but I had also developed HELLP Syndrome literally overnight. I was being induced immediately.
Sixteen hours later, I was introduced to my newborn son before he was whisked away to spend his first thirteen hours of life in an oxygen tent. We spent the next week in the hospital as we waited for my body to stabilize itself. After one full week of bed rest, four days of which I was not allowed to have my son with me without supervision, I was finally discharged from the hospital.
Three years later, I finally began researching what happened. Three years later, I finally started seeking answers for what went wrong when my entire pregnancy had been the epitome of perfect.
Pre-Eclampsia is probably the most well-known pregnancy complication, and is marked by hypertension (high blood pressure), swelling, headaches, and vision changes for the more serious cases (“floaters” or temporary blindness, blurriness, etc). The cause of pre-eclampsia is still largely unknown, and the treatments include blood pressure lowering medications and bed rest to prolong the pregnancy for as long as possible, then delivery of the baby. Pre-eclampsia can occur anytime during pregnancy, delivery, and even postpartum.
There are two main variations of pre-eclampsia: Eclampsia and HELLP syndrome. Eclampsia is signified by multiple strokes that could lead to coma, brain damage, or death of mother and/or child. It is severe, but can be prevented with early detection of pre-eclampsia.
I had been having a lot of pain in my ribs on the right side for a week or so before I went into labor. I never mentioned it to my doctor because I just thought I'd twisted funny or carried something I shouldn't have and pulled a muscle. I was taking Tylenol to try and alleviate the pain.
On the night of November 6, 2012 I went into labor. I got my epidural and tried to sleep through the night while I continued to dilate. The next afternoon I asked the nurse for some Tylenol because of the pain in my upper right rib area. I told her I thought I had a pulled muscle, so she gave me the Tylenol. A little while later my doctor overheard me talking to my husband about some pain I was having in my right shoulder. I told him I thought I'd slept funny on it and asked him to rub it. My doctor asked me some questions about the pain in my shoulder and I told her about my rib pain too. She had a funny look on her face but just said she was going to order some tests. She returned a little while later and told me I had HELLP Syndrome (which didn't mean too much to me then because I had no idea what it was). I was immediately put on magnesium sulfate to try and prevent seizures, and put on pitocin to try and speed up the delivery process.
After failure to progress, my doctor decided to perform a cesarean and Brendan was born at 8:44pm. I was told that the HELLP symptoms should go away after that, but I would be monitored and have blood samples taken every hour overnight. The next morning the pain in my ribs had spread toward my abdomen. I told my husband at around 5:30 or 6:00 am to find a nurse because something seemed really wrong. My doctor came in and told us my liver enzymes had skyrocketed to 10 times the norm and my platelets were in the low 20,000's. I had a CT scan and it revealed a 15cm grapefruit sized hematoma in my liver. As the morning wore on the hematoma ruptured and blood began pooling in my abdomen. I was rushed to interventional radiology and it took several tries to embolize my hepatic artery to stop the bleeding. I was given four units of blood and two units of platelets. I was then transferred to Brigham Women's Hospital in Boston where I could be better cared for should more issues arise (I told them I wouldn't go without my baby so they transferred him as well). I was in the ICU for three days and on a surgical recovery floor for two days. A nurse would bring Brendan to see me when they weren't busy in the nursery, so I would get to see him anywhere from 15 minutes in a day to an hour in a day. I was finally transferred to the maternity floor where I could spend more time with Brendan and recover for 3 more days.
I was discharged on November 15th, hopped up on tons of pain medicine, to continue recovering at home. Our sweet little baby had no issues at all and is perfectly healthy. I had never heard of HELLP syndrome before being diagnosed. It is a rare and terrifying diagnosis and I am especially grateful that my doctor was able to identify what was happening to me and immediately take the correct measures to save my life!
HELLP Syndrome is the most severe variant of pre-eclampsia. It is a serious, life threatening disease that is still largely unknown in America. HELLP stands for hemolysis (breakdown of red blood cells), elevated liver enzymes (detected by protein levels in your urine), and low blood platelet count. One of the dangers of HELLP syndrome is its symptoms, which are often misdiagnosed as the flu, gastritis, etc. Symptoms of HELLP often include those that also mark pre-eclampsia, such as severe swelling and water retention, headaches, and visual changes. One of the distinguished markers of HELLP Syndrome is severe stomach pains. The most common way to diagnose HELLP is by checking protein in the urine and platelet counts. HELLP Syndrome has an incredibly high mortality rate, as high as 25% for mothers. The most common cause of death is liver rupture or stroke.
HELLP can also have a serious impact on babies, with a mortality rate as high as 60%, a rate higher than both pre-eclampsia and eclampsia. According to the preeclampsia.org, "Most of these deaths are attributed to abruption of the placenta (the placenta prematurely separating from the uterus), placental failure with intrauterine asphyxia (the fetus not getting enough oxygen), and extreme prematurity."
I had been experiencing terrible heartburn for a few days, without any relief. I lied to my husband the day I had my son, told him I was having vision issues, because I had woken up that morning with an unbearable sense of dread about the baby. While I was being admitted, my heartburn changed from soreness in the middle of my chest to a sharp pain on my right side. As soon as I told the doctors this, they ran an ultrasound on my side instead of my belly and found a large hematoma developing on my liver.
Off I went for an emergency C-section, and had a perfect little boy. He was fine and was never in any danger. Two hours later, my hematoma ruptured. I woke up nine days later. I wasn’t involved in the scariest part of my HELLP experience. Everything they told my husband about me was “if”: IF I survived, IF they could stop the bleeding, IF I had suffered brain damage, since my blood pressure had dropped to 38/17 for about ten minutes. Any damage to your liver bleeds a lot, but because HELLP destroys your red blood cells, your blood doesn’t clot like it should. They opened me up three times to repack my liver, and I received over 50 units of blood. I exceeded everyone’s expectations and went home after 15 days. HELLP syndrome with hepatic rupture has up to an 86% mortality rate, according to some studies, so I exceeded that expectation, too.
The long term effects of HELLP syndrome on mothers are still being researched. Most complaints include random liver spikes, onset of autoimmune disorders mere months after HELLP diagnosis, and PTSD. One of the most heart wrenching effects of HELLP syndrome is the ever-constant fear of another pregnancy. Survivors who go on to have one or more pregnancies after their HELLP pregnancy are dubbed “brave,” and many say that it’s not something they would ever do again. Risk of getting pre-eclampsia is significantly higher for those who have suffered HELLP, and there is also a higher risk of developing HELLP again. There is very conflicting research on how the severity and timing of pre-eclampsia and HELLP syndrome affects the outcome of subsequent pregnancies. Some research says that those who had it later in their pregnancies will have less chance of developing it in subsequent pregnancies, while some say that those who had it less severe will have less chance of developing it. Others say the earlier you developed it, the later you may develop it in your next pregnancy.
Little to no research is available on why HELLP occurs, what can be done to prevent it, and how to better help mothers and babies who suffer from it. The research available is often confusing and conflicting. HELLP syndrome is one of the most dangerous complications of pregnancy and one of the least known, even by members of the medical community.
If you have any symptoms of pre-eclampsia or HELLP, or suspect that something’s “not right”, seek out a doctor immediately. Don’t wait until it’s too late. Without the proper interventions, most who develop HELLP will die quickly. Education, early detection, and prevention are the only cures.
If you are a HELLP survivor, there are multiple Facebook forums there for you! You aren’t alone in your struggles. Every story is worth being told and being listened to, and each story deserves attention. If you would like more information about HELLP Syndrome, please visit www.preeclampsia.org/health-information/hellp-syndrome