Updated: Mar 15, 2019
Disclaimer: Below is part one of a three-part series where I recount my experience with HELLP Syndrome, including reflections on my pregnancy, in an effort to bring awareness to this condition that few know of and little is known about. I am in no way endorsing or discounting any specific lifestyle choices, activities, or methods. All ideas expressed should be perceived as reflections based on my experiences and nothing more. I also suggest following THIS LINK for more detailed information on HELLP Syndrome, as the intention of this article is not to educate, but rather to raise awareness.
I did everything right.
When the ER doctor entered our cold, brightly lit room at 2AM, blood test results in hand, and proceeded to explain why he was convinced I had this condition called HELLP Syndrome, my concern for my baby almost instantly transitioned to the deafening thought that
I DID EVERYTHING RIGHT.
The morning after we discovered I was expecting, I woke up early so I could wrap my mind around what we had learned late the evening before. I was happy, so very happy. I packed my lunch that morning with special attention to food groups. I hesitantly (but intentionally) chose tea instead of coffee (I still don’t know how I did this for 7 months). I retrieved the extra water bottles that I had placed in the refrigerator the night before and grabbed one more from the pantry for good measure. I kissed my gent goodbye, put on my favorite playlist, and drove to school with a mildly disbelieving flutter in my heart. I was pregnant with my first baby.
As the weeks progressed, I printed food plan menus organized by trimester. I signed up for prenatal yoga at the brick walled, tall windowed, lavender scented studio in our quaint little downtown, anxious to connect with my baby in such a charming environment. I bought the right nail polish. I embraced my grey hair. I switched to natural toothpaste. I did my Kegels and squats. I signed us up for our Bradley Method classes. I read the books. I faithfully gagged down fish oil EVERY SINGLE NIGHT. I wrote my birth plan.
I HAD NEVER FELT HEALTHIER.
30 weeks and 6 days into my pregnancy, my sister and her fiancé came over to spend the night with us. We watched the movie Me Without You, something we had wanted to do since reading the book together a few weeks prior on our summer weekend trip to the lake. We assembled the bouquets for her upcoming wedding after I made one of my favorite pregnancy dinners: crispy baked chicken thighs with carrots and warm rolls. The Bradley Method had me tracking my high protein diet in a spreadsheet, so I was excited to log my protein points for the evening. (I told you, I did EVERYTHING!)
As the movie was ending and we were working on our final bouquet, I began to feel what I thought to be a piece of chicken, maybe even a small bone, that didn’t quite make its way down. The pressure was centralized in my upper abdomen, just below my chest. I sat up straighter and breathed deeper. I attempted to wash it down with water. Nothing worked. We all said goodnight and I began to get ready for bed, beginning to think it could be heartburn. I had never experienced heartburn before but knew it was common in pregnancy. At this point, the pain was sharp. I couldn’t lean backwards because the pain would radiate into my back. I couldn’t lean forwards because it would make it difficult to breathe. I began to panic. At the urging my husband, I called triage and asked for advice on managing heartburn. She heard my labored breathing and suggested I get into the nearest ER (my delivering hospital was 45 minutes away, the closest hospital was only 10).
We arrived at the hospital around midnight and they immediately began testing. They took blood. They did an ultrasound. They monitored the baby.
I remember trying to keep my eyes closed as I sat, shivering, at the edge of the crinkly paper. The fluorescents were harsh and the room was cold. We were silent, concentrating on the gentle thump of the baby’s heart.
A few hours and pokes later, the doctor told us calmly that he suspected HELLP Syndrome and we needed to drive immediately to our delivering hospital. We were allowed to stop for gas but not clothes. I still had my IV, and it was the middle of the night.
Desperate for answers, my husband researched HELLP Syndrome on some medical sites. After reading that the mortality rate could be as high as 25% while pumping gas (something I found out a few weeks later), he remained silent the rest of the drive, his hand nervously squeezing mine as I tried to breathe through the pain.
When we arrived at our hospital, they had a dimly lit room ready for us. The nurse had pushed two chairs together for my husband and covered us with warm blankets. They brought us juice with chopped ice and changed out my IV. These comforts, although tiny, were like a warm, reassuring embrace. I instantly felt safe.
They ran a series of tests, some repeated and some new. My heart was good. My blood pressure was relatively low. The baby’s heart rate was steady. The problem, they agreed, was seen in my blood and urine.
Simply put, my urine had high levels of protein. My liver enzymes were elevated. My platelet count was low. Although my blood pressure was low and my pain was centralized and not in the right quadrant, as is common, it was determined that I had HELLP Syndrome, a complex and life-threatening pregnancy complication that is often misdiagnosed and misunderstood. We had never heard of it prior to that night.
After encouraging us to sleep for a few hours in triage, they relocated us to our room, where we would remain until our baby’s arrival. For the next 5 days, my blood was tested and baby was monitored routinely. My team of doctors and specialists, specializing in my care and the baby’s, weaved in and out to update and prepare us for what was ahead, including what to expect from a preterm delivery. I can still feel the elderly neonatologist’s hand on ankle as he described the typical appearance of a preemie. They gave me two rounds of steroids to develop our baby’s lungs, which temporarily improved my levels. My pain came and went. My levels rose and fell. We were in limbo.
The day before her arrival, they began discussing discharge. Although I had a diagnosis of HELLP Syndrome and our baby’s size was believed to be in the 3rd percentile (down from the 90th just 8 weeks prior), there were inconsistencies with my condition that had them resting on about 20% doubt. My liver enzyme levels and platelet counts were not dramatically worsening, my blood pressure was within normal ranges, and my abdominal pain was centralized, not in my right quadrant (where the liver is located), and had begun tapering off all together.
My family was optimistic and relieved to hear doctors discussing this possibility during their visit that day, especially because my baby shower was two days away (of course).
I remember remaining quiet during their discussion. My heart started to beat a little faster and, as soon as they exited the room, I turned to my husband and let out a tearful, “I don’t want to go home.” I knew something was wrong.
The thought of going home after a week of irregularities, uncertainty, fear, confusion, grief, and physical pain just didn’t sit right with me. To calm me down and help ease my mind, my family took me on a walk around the hospital and to go get lunch in the cafeteria. Not long after, my abdominal pain returned. They ran additional tests and determined we should stay another night. We fell asleep, thankful to still be within the hospital walls.
Late that evening, we were woken by two doctors with a simple message – it was time. My latest blood results arrived, indicating concerning liver enzyme levels and platelet counts. The pain I had felt earlier was likely another physical indicator. They would begin induction immediately.
My labor went as well as expected. I had a natural delivery in the OR with 15+ people on hand and, at 4:46 PM the following day, our 2lb 11oz little girl entered the world with a healthy set of lungs to a room full of welcoming smiles and applauding hands.
I remained on a magnesium drip for 24 hours after her arrival to prevent seizures, unable to visit her in the NICU. We were able to bring her home 28 days later, weighing 3lb 14 oz. She was a fighter long before she came, as we later realized.
The Placental Analysis later confirmed that its size was small, in the 5th percentile. The umbilical cord was hypercoiled, causing decreased amounts of oxygen in the cord blood. This partially explains her Very Low Birth Weight, which was far below her projected 3rd percentile. She wasn’t getting the oxygen she needed and thus her growth was stunted. Additionally, areas were found indicating blood clotting, an interruption in blood supply to the placenta, and advanced maturation. It was explained to me that when these issues started to occur, my placenta released factors to try to improve blood supply to itself. These factors ultimately led to HELLP Syndrome.
It would have been so easy for me to hop on Facebook quickly to ask for some sage wisdom on heartburn. I could have tried different Pinterest-found remedies, just as I had done weeks prior for nausea. I could have altered my diet. The only check they routinely did at my prenatal visits was for blood pressure, which would have likely continued to show no signs of irregularity. That’s what makes HELLP Syndrome so easy to miss – the signs aren’t always so clear, and how it manifests can vary from woman to woman.
I realize that my experience is not the typical HELLP Syndrome experience, if there is such a thing. I also realize that we have much to be thankful for. We caught it early, and our daughter is healthy. This, however, in no way alleviates the pain and fear we experienced. On a very primal level, I grieve knowing that my body failed to provide her with the home and basic human needs she required. I grieve knowing that I will not be able to give her the siblings I so deeply would have loved to. I grieve with a full heart, though, for her birth story is one of faith and fight.
To read Part 2 of this series, follow the link below.