My Birth Story: HELLPS

It was May 18, 2013. And hooray! Just one more day until I was in my third trimester. I was nice and ready to coast through the next 12 weeks of pregnancy. I had been taking the hospital-advertised fitness classes, completed the hospital tour, took baby prep courses, and decided to attempt to breastfeed upon delivery with the help of a ready fleet of lactation consultants. Single at the time, I lived alone in my one bedroom apartment. I had yet to have the usual work and family issued baby showers, and for now, my accumulation of stuff was minimal. However, I had already envisioned the placement of new baby furniture that eased my anxieties of an overcrowded space, my new baby, and me.

I was preparing for bed when a huge wave of nausea swept over me. …what? I hadn’t felt nausea since my first trimester. I downed some Tums. Then more pain. Pain that forced me to double over. I’d try to stand, but the pain forced my gaze back to my puffy ankles. Those days, at day’s end, I retained water in my ankles despite my attempts to avoid sodium. I tried not to panic. Breathe Aryeonne. I held my pregnant belly and while still bent over, waddled to my bed, and tried to lie down. The moment I sat on the bed, I felt dizziness and another wave of nausea. This time the nausea sent me to the toilet. I vomited. Then, I allowed myself to panic and think. Ok. Think. Vomiting is not good this late in the game. I remembered reading that it could be indicative of a serious issue. **SIGH**

My mind jumped back to when I went to the emergency room in the middle of my second trimester for a similar pain. I distinctly remember feeling engulfed in embarrassment when the rushed ER doctor, who hadn’t ordered blood work or any other medical service, said: “It’s an extreme case of gas. Welcome to being pregnant.” I was snapped back into reality by the worsening pain and the need to vomit a second time.

At the time, I was not dating my son’s father. We had broken up. It took EVERYTHING in my being to call him and attempt to explain what was going on. But I did. I told him that vomiting was bad and we needed to get to the ER if to do nothing else but check on the baby. He got there, and I could barely speak or stand up straight because the pain was so intense. He recommended going to the birth hospital especially since the other hospital sent me away with Tums samples. I didn’t care where I went at the time because I was hurting so badly.

When I arrived at the hospital, I was whisked off to labor and delivery because they thought I was in labor. I finally gathered the strength to scream: “I’M NOT IN LABOR BUT THERE IS SOMETHING WRONG!”, gasping for air and nearly passing out. I was moved into a room where a nurse began to examine me. . She asked me about the pain, where it was, how it felt, etc. The pain was so widespread across my abdomen that specifics from me weren’t happening. The on call doctor finally came in and asked more questions. She said something about my gall bladder and then ordered blood work and an ultrasound. I was feeling faint. I remember a midwife busting through the door in surgery garb all flustered and in tizzy. She looked at me after composing herself and began to explain how I was in great hands with my doctor and this hospital was one of the best hospitals in the country for labor and delivery. She said she was the calm before the storm and that when the doctor arrived everything would go into warp speed. She also let me know that my baby had to be delivered in the next 30 minutes via emergency cesarean section. Then she asked me if I was a Jehovah’s Witness. Extreme fear is ice cold, and its grip is paralyzing. What if I don’t wake up? What if I had taken too long and killed the baby somehow? Too much stress. I did too much – school, internships, work – so selfish. Why had I decided to do this alone?

When anesthesiologist arrived, he interrupted my self-loathing and wheeled me to the OR to be prepped for surgery. The on call doctor met us in transit and began to explain that I had HELLP Syndrome (https://rarediseases.info.nih.gov/diseases/8528/hellp-syndrome) – an acute illness that makes eclampsia look fun. She said that my body was rejecting the pregnancy and my body was poisoning itself. My liver was about to rupture and my blood platelet count was in the four-digit thousands. In other words, if I had bled for any reason, I would have bled out in no time.

One of the last things I remember was another nurse joining the fast-paced walk to the OR. She held my hand and looked me in the eyes then nodded to show solidarity. Then, turning her focus back to keep up the pace,I watched her lips mouth the Lord’s Prayer. After that, I remember feeling warmth and watching my eyelids close as a result of the anesthetic.

I woke up. I woke up! Disoriented and numb. Everything was blurry. I was so tired. I woke up in ICU, couldn’t gather the strength to ask about my baby, and fell asleep again. I woke up a second time – hours later. So many faces – my family and close friends were all lined up on the wall of the post-ICU room with concerned faces and contorted smiles. I was still groggy, but I had a bit more energy and tried to smile back. The doctor came in and showed me my morphine pump and how to use it. Praise the Lord for morphine. The nurse who was with me initially came with a second nurse to help me sit up. I had machines massaging my legs and saw signs indicating to the nurses that I wasn’t allowed to get up. The doctor told me that she was happy that I was awake, but that I had a long journey ahead of me. What I didn’t know is that many HELLP Syndrome patients die after giving birth. They die because their bodies have to restart. My body had to restart.

I had hardly any kidney function and I was prone to seizures. My blood pressure was sky high and I had to wait to see what route my body would take to reach equilibrium – some people never do. I was in the hospital for a week. One nurse noticed that my blood oxygen levels had dropped well below normal. Got an x-ray and discovered I had fluid on my lungs, and nurses would come in hourly to hold pillows against my incision to make sure it stayed closed as I was coughing up phlegm until my nose bled. I had nose bleeds easily because my blood still wasn’t clotting.

I finally got to see my son on the 3rd day of my hospital stay. I was overjoyed. He was tiny, but I could tell he was strong. He was actually, at the time, in a more stable state than I was. He was off the ventilator after an hour and his brain bleeds from emergency cesarean were resolving. I got back to my room, and my blood pressure was stroke level – even on all 3 blood pressure medications. The nurses and my family played soft music for me and continuously told me to relax – as in try not to be excited or worry about anything – the irony.

After a couple more miserable days, my birthday came and my grad school cohort sent me an Edible Arrangement. I must have looked like death, because the delivery guy said, “happy birthday – um, everything is going to be ok.” and scurried off. The next day, I felt strength for the first time. The lactation consultant came in with a hospital grade pump, and one of my best friends came and coached me through my first pumps of golden beta-carotene rich colostrum (co·los·trum/kəˈlästrəm – the first secretion from the mammary glands after giving birth, rich in antibodies). My bestie and I smiled at each other, and the nurse was thrilled, and quickly took it to give to my son. He had been on donor breast milk since birth and would be until I got the hang of pumping.

The next day (around day 6) a random nurse came into the room and asked if she could hug me. I let her, and she explained that she almost didn’t recognize me, and that she was happy that I survived. She explained that my eyes were yellow and I had no color in my face. That really hit home. The next few days would be visits to see my son and finding the right medicines for me to take until I was completely well. Getting better would take months, and getting back to myself would take even longer. Nonetheless, I was discharged from the hospital and went home for the first time in 7 days. My days away from the hospital would be few for quite a while, as I’d need to come back frequently in the next 3 months to visit my son in the NICU. I also was lucky enough to find a HELLP Syndrome support group, and that lifted some of the guilt somehow.

There is still much unknown about HELLP Syndrome. Researchers are still gathering data about the short term and long term effects. After my hospital stay, I noticed my vision was way worse, I still retained water, and any little stressor caused a headache. Eventually, I’d say over a year later, these things began to subside. No one knows why I fell prey to it after many weeks of clean bills of health from my then OB/GYN (As soon as I was able, I switched to the on call OB/GYN). All I know is that I’m glad that I didn’t ignore my symptoms and I gathered the courage to speak up. I later learned that if I had’ve ignored the pain and forced myself to sleep, my baby and I wouldn’t be here today.

Listen to your body and be adamant and insistent about your health, sis. If they don’t listen, get a second opinion. See below for traumatic birth support group info:

Solace For Mothers Improving Birth Northside Maternity Resources (Atlanta)

Read this for my post-childbirth update: https://amotherthingcoming.com/2019/03/04/about-that-preemie-life/

We support March of Dimes. Join our team – march and/or donate: https://www.marchforbabies.org/sollylevi

Written by Aryeonne Johnson