My Experience with HELLP Sydrome, the Condition Every Pregnant Woman Should Know About

“Rebecca, your liver is rupturing and we have to perform an emergency C section to get your baby out immediately. Do you give your consent?” the doctor looked at me tensely. I knew that my baby was just barely 29 weeks and already measuring 3 weeks behind, but I also knew that there was no other option. I had been in the hospital for nearly a week fighting severe preeclampsia. I was in hypertensive crisis, my brain was swelling, my kidneys were shutting down, my platelets were dropping, and my lungs were filling with fluid.

I had developed Class I HELLP Syndrome, the most severe variant of preeclampsia, with a maternal mortality rate as high as 30% and infant mortality rate as high as 60%.¹ Preeclampsia occurs when the placenta, which acts as the barrier between the mother and baby, functions poorly. A war between the mother and baby ensues, and the failing placenta releases chemical proteins that damage the mother’s blood vessels and organs. The causes are currently mostly conjecture, and delivery of the baby is the only cure (however, some mothers go on to develop postpartum preeclampsia up to six days after delivery). My baby would have to make his entrance into the world early to save my life.

Photo credit: Christy Brown Photography

I had mild preeclampsia in my first two pregnancies and was induced at 37 and 36 weeks. Going into my third pregnancy, I had no idea what was in store for me. The first trimester passed uneventfully with some mild morning sickness, and the second trimester whirred by under the load of mom life and nearly 60-hour work weeks as a technical writer. Starting at around 22 weeks, I started noticing rising blood pressure. By 25 weeks, my OB was adding a new blood pressure medication each week, but it was not controlling the rising tide—reaching as high as 220/130. I worried that my OB wasn’t treating my BP aggressively enough but trusted in his expertise. Some nights I went to bed feeling the pressure so intensely that I was worried I wouldn’t wake up in the morning. When I was 28 weeks pregnant, my OB called and told me to immediately pack my bags and drive to a hospital an hour away with a level III NICU. The 24-hour urine test that I had turned in the week prior revealed that my kidneys were spilling massive amounts of protein, and I had severe preeclampsia.

Photo credit: Christy Brown Photography

I was admitted and immediately put on a magnesium drip to prevent seizures. The first two days, I wasn’t allowed to eat or leave my bed as the magnesium burned through my veins. I was terrified that they were going to take my tiny baby from me before he was ready. Besides the effects of the “mag,” I felt mostly fine and desperately wanted to go home. But by the evening of the third day, I knew that something was terribly wrong. My eyes were swollen shut, I felt intense pressure inside my head, I was peeing Coca-Cola, and I had an undeniable feeling of “doom.” I knew deep down inside that I was dying, so I begged the doctor on the floor that night to induce me. He looked at my swollen terrified face from behind his round metal-rimmed spectacles and told me, “Let’s not be hasty,” promised to talk with my maternal fetal medicine doctor in the morning, and prescribed anti-anxiety and sleeping medication. My instinct told me that I didn’t trust this particular doctor to deliver my preemie, so I agreed and tried my best to get some rest on the plastic-encased hospital bed despite the leg compression devices ballooning continuously around my calves and hourly blood pressure readings.

By morning, I felt slightly improved, so when the new nurse told me my MFM was unavailable and my labs “looked good,” I resigned myself to the waiting game. In reality, my liver enzymes were trending upward and my platelet count had been dropping more than 20 points every day I had been hospitalized. And the pain I was feeling in my ribs radiating around to my back that I thought was a pulled muscle was actually upper-right quadrant pain—a hallmark symptom of the liver failure associated with HELLP Syndrome. That pain flared into unbelievable burning down my arms and agonizing pressure in my stomach that night. Luckily the new OB on the floor took one look at me, ordered lab work on the spot, and discovered that my labs had finally caught up to what I had been feeling.

“Rebecca, can you hear me? Do I have your consent?” he repeated. Unable to speak through the pain, I nodded. He squeezed my arm and rushed out of the room to set the C section into motion. The next hour was a blur of fighting for breath through my fluid-filling lungs as the nurses ran with my gurney to the OR and a ceiling of bright lights beaming overhead as a team of doctors worked over me. My little preemie was born without a cry weighing just 890 grams (1 lb. 15 oz.) and had to be resuscitated and placed on a ventilator.

We found out at his birth that he had suffered a stroke in utero at 25 weeks because of my high blood pressure. Due to this complication and many others, he spent 84 days in the NICU before coming home to us. He now has mild cerebral palsy (hemiplesis) but is an incredibly intelligent, thriving three-year old who charms everyone he meets. We are lucky. I am devastated that other moms and babies have not been—more than 76,000 moms and 500,000 babies die from preeclampsia every year.¹ What is even more devastating is that recent studies have shown that 41% of these deaths were preventable.¹ And for the survivors of these conditions, the effects can be lifelong—50% of mothers will go on to struggle with hypertension the rest of their lives and 66% of them will die from cardiovascular disease.¹

Preeclampsia, HELLP Syndrome, and other hypertensive disorders of pregnancy are the leading cause of the U.S.’s rising maternal mortality rate. Many of these cases are diagnosed too late because the symptoms can be silent or are often brushed off as common complaints of pregnancy. Thus, arming ourselves with awareness is key to saving our sisters, friends, spouses, and daughters. Please share this story, and let’s raise awareness for these symptoms:

• High blood pressure after 20 weeks
• Vision changes
• Headache that does not go away with Tylenol and hydration
• Swelling and sudden weight gain
• Upper right side abdominal or shoulder pain
• Anxiety or feeling of doom
• Nausea and vomiting after 20 weeks

If you are a pregnant mom experiencing these symptoms, you should be checked out by a medical professional. It is your right to be seen, have your blood pressure taken, to request blood work (a CBC and liver function panel), and to get a second opinion! Trust your gut. You are the best (and maybe only) advocate for yourself and your baby. Let’s not leave the precious lives of moms and babies up to a matter of luck!

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1. Preeclampsia.org