HELLP Syndrome: The Pregnancy Complication I Never Expected

When one mom was diagnosed with HELLP Syndrome, a variation of preeclampsia, it meant that her daughter needed to be delivered by emergency C-section at 32 weeks. Here's her story.
Courtesy of Serena Kappes

I'm a worst-case-scenario person. I was only 15 when I lost my father to lung cancer, and worrying about what could go wrong became embedded in my DNA. When I got pregnant with my daughter, I would read pregnancy books and zoom in on things that could go wrong. And ever-present in my mind was the memory of a friend who, years earlier, had died during childbirth.

Yet somehow, as my pregnancy progressed, I started to calm down. I did prenatal yoga. I exercised. I loved knowing this little life was growing inside me. But around 26 weeks, I slipped and fell in the lobby of my apartment building on a cold, icy night. To avoid landing on my belly, I fell backwards. I started having intermittent pain in my abdomen, and the next day my doctor advised me to go to the hospital for an ultrasound.

Something Is Wrong

Once admitted, I was hooked up to a fetal monitor and learned I was having Braxton Hicks contractions. Because they weren't subsiding, I was given a shot of Terbutaline, which treats preterm labor. My heart felt like it was beating out of my chest. Luckily, my contractions subsided after one dose, and I went home.

Things seemed to go back to normal; the contractions didn't return, and I began to feel better. But a couple of weeks later, my stomach just didn't feel right. I had intermittent diarrhea, nausea, and a dull but persistent pain at the top right quadrant of my chest. I thought I had food poisoning, but it lasted a few days, so my doctor sent me to my general practitioner -- who agreed with my self-diagnosis. She was convinced it was food poisoning, and said I didn't need blood work. In retrospect, I should have insisted -- but what did I know?

At 30 weeks, a growth scan showed the baby's growth was restricted, and while that wasn't necessarily cause for alarm, it merited continued monitoring. I still had intermittent symptoms -- I kept thinking the food poisoning was taking a while to work out of my system -- but many people told me the third trimester was the toughest. My experience simply seemed to be bearing that out.

Two weeks later, during a routine checkup, my blood pressure was high. My ob-gyn sent me to the hospital for an ultrasound and while I was there being monitored, he called to say there was protein in my urine sample. The hospital staff sent me to another department for further monitoring and blood work. After several hours of tests and waiting, they told me I could go home and do a 24-hour urine test to monitor the protein in my urine.

Only 32 Weeks

Everything changed, though, when the results of my blood work returned. A nurse ran into the room and told me I had to have an emergency C-section -- immediately. I panicked. "How can I be having a baby now -- it's only 32 weeks?!" I asked. I was told I had HELLP Syndrome -- a variant of preeclampsia that involves hemolysis (breaking down of red blood cells), elevated liver enzymes, and low platelet count -- and that I was at risk of having a stroke or seizures. All of the symptoms, the little toxic clues my body had been giving me, suddenly made sense. My baby and I were in grave danger.

Because I was high-risk, I needed to be delivered by a maternal-fetal specialist (one whose first name, it turned out, means "angel" in Farsi). She assured my husband that I would be okay and did her best to calm me. Within minutes, I was in the operating room.

My daughter, Aria, was born at a tiny 2 pounds, 10 ounces. I barely got to meet her before she was whisked away to the NICU. Meanwhile, my blood pressure had to be stabilized and I couldn't leave my bed for 24 hours. Family came and went from my bedside to give me reports about my baby. A NICU doctor visited to walk me through the baby's condition: Even though Aria was small, she wasn't nearly as tiny as some of the other "peanuts" in the NICU. She was more like a cashew. As I pumped my milk and cried, all I could think about was that I was missing out on crucial time bonding with my baby. I was depressed and inconsolable, and having a roommate whose healthy baby was by her bedside felt cruel.

In the NICU

When I was finally wheeled to Aria's incubator in the NICU 24 hours later, I saw a frail baby hooked up to tubes, struggling to breathe. My heart was breaking. I needed assurance that she'd be okay, but no one could give that to me. The fear and worry that had become embedded in me after my father's death 20 years earlier overtook me again.

I was discharged from the hospital five days later; I was taking high-blood pressure medication and doing daily blood-pressure checks to make sure I was fully stabilized. I slept at home but otherwise kept vigil by Aria's bedside. I would do skin-to-skin kangaroo care with her, but then she'd have an apnea episode, which is common in preemies, and stop breathing. A nurse would grab her from me and resuscitate her, an image that's still etched in my brain.

Aria also had a PDA (patent ductus arteriosus), an open artery in her heart that typically closes in full-term infants but doesn't always with preemies. Luckily, she was able to avoid surgery, thanks to medicine.

Since she wasn't strong enough to nurse, Aria drank my pumped milk through a feeding tube until she was 5 weeks old. What got me through those days was the caring hospital staff and my fellow NICU parents. We were all walking the same shaky, unknown path. We would pump together -- our own version of a coffee klatch -- and share updates about our babies.

Coming Home

Six weeks after her birth, Aria reached the 4-pound mark and was able to come home, still swimming in her preemie going-home outfit. She was connected to an apnea machine to monitor her breathing for two months. But she gained strength and began reaching her milestones, although they were a little delayed.

That was eight years ago. Today, Aria is a spunky, smart, and hilarious almost-third-grader, and a loving big sister to my 2-year-old son, Avan. There's a reason they're almost six years apart: It took me that long to be ready for another pregnancy. It was just too scary.

When I became pregnant with Avan, I was 41. The specter of HELLP Syndrome haunted me, but I was closely monitored by a maternal-fetal specialist from the start. I also learned I had a blood-clotting disorder, which had contributed to the compromised blood flow to my placenta during my pregnancy with Aria. I needed to self-administer twice-daily blood thinner injections (not fun for someone who can't even look when she gets blood drawn). But I made it full-term with Avan -- even going past my due date.

My plans for a VBAC were dashed because my labor wasn't progressing and an induction was deemed too risky. But I put aside my disappointment because I was lucky to have a healthy baby -- all 7 pounds, 10 ounces of him -- who got to sleep in my hospital room. Even more amazing: When I left the hospital, Avan came home with me.

Today, I feel blessed to have both my kids, and I'm glad I took the chance on a second pregnancy even after having HELLP Syndrome the first time around. I can't imagine life without either one of them.

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