Hellp Story: That's the Unsettling Part, It Was Just Luck

December 20, 2023 By Alexandra L

Hellp Story: That's the Unsettling Part, It Was Just Luck

When reading the personal stories and outcomes of others with HELLP, I feel lucky; lucky to have had my health improve upon delivery, lucky to have delivered a healthy daughter, lucky to have had excellent medical care, lucky to have faced no racial disparities or bias. But that’s the unsettling part, it was luck.

I look back at pregnancy and get this panicky feeling. From day 1, pregnancy wasn’t for me. The first trimester, I was nauseous. The second trimester, I became anemic. The third trimester, I was diagnosed with FGR (fetal growth restriction). At the time, it just felt like the classic tale of pregnancy whack-a-mole, a new symptom popping up after one resolved. Sprinkle in a sudden onset of first time depression, lasting 3 months and lifting as quickly as it appeared, it is safe to say I didn’t feel like myself the entire time.

After the FGR diagnosis, my husband and I felt like we were waiting for the other shoe to drop, holding hands and our breath at each appointment. At 32 weeks, baby dropped below the 10th %ile and I began going in 2x/week - rotating between non stress tests and ultrasounds. At 36 weeks, baby dropped to the 4th %ile, my BP started to rise, and I had proteinurina. I was scheduled for a c-section the next day. Although scared, I also felt a tremendous sense of relief; I didn’t think I could do one more day of pregnancy and was so eager to be on the other side.

It wasn’t until my doctor got my labs back (drawn in preparation for delivery), that we discovered I had HELLP. When being wheeled into the OR, she told me I had this rare syndrome I had never heard of and was hours away from liver failure. Moments later, my daughter was born at 5lbs 1oz at 37w 0d. Aside from being small, she was healthy and circumvented the NICU. Though conscious, I had hemorrhaged and was in a total magnesium drip feverish haze. My care journey is a blur, but I improved drastically each day. Every bedside nurse I met during my 5 day inpatient stay was shocked upon meeting me because I had “the worst labs they had ever seen.” Even the OR nurse came to check on me twice when I was on the L&D floor.

I was so focused on my baby, that I didn’t question how I was feeling. I was so grateful to be pregnant. I was so aware of other people’s much more serious stories, that I kept quiet. I had never been pregnant before and wrote everything off as typical third trimester woes. In hindsight, with the knowledge I have now, I realize how much I dismissed myself. I had headaches, but have had regular migraines since childhood. I had bloody noses, but had them since becoming pregnant. I had severe chest pains, but thought my rib cage was expanding. I couldn’t sleep, not because of the hip and back pains, but because I couldn’t lie or sit down without sharp stomach/chest pains. I had weird shoulder pains, but assumed it was from stress. In reality, I was in so much pain that I was spending 2 hours a night in a hot shower or bouncing between rooms gritting my teeth in pain. As someone with a high pain threshold, these should have been giveaways. I remember contemplating one night if I should go to the hospital, but didn’t because I didn’t know that this was abnormal. I remember texting a few friends to help me take the pulse on my experience: “were you so uncomfortable in the 3rd tri that you couldn’t sleep?” Their answers were yes, because it is subjective. There were other giveaways too: I lost my appetite and normally love to eat every 2 hours, I stopped working out and normally do so most days (and did so throughout pregnancy).I oddly felt better in the mornings; so during my appointments, I would almost forget what I felt like the night. When the doctor asked how I felt, I just said I was uncomfortable with no detail. To them, I looked OK - not puffy, not swollen, no out of range tests, no risk factors. Everyone’s pregnancy, and HELLP journey, is different. Keep sharing your story, it may help someone know what to look for.