Preeclampsia & HELLP Syndrome. Amy's story.

For as long as I can remember my biggest fear in life was not just dying, but dying while giving birth. I can’t explain where this fear comes from, I’ve never known anyone who has died while giving birth, my own mother birthed five healthy children with really no issue, but still the fear lingered.

Early on, my pregnancy with Piper was beautiful. I absolutely loved being pregnant and the bond I knew I was forming with my little girl made me so happy. Each morning as I settled into my desk at work she would start flipping around and kicking and I would touch my belly - it became our ritual morning hello to each other.

Early on we had a couple of hiccups; a sub chorionic hematoma that landed me in the ER at 8weeks; an episode of passing out while on a flight home from a work trip which resulted in my first ever ambulance ride. Regardless, each week Jim and I celebrated our little girl's growth and loved joking about the 90s toys the app gave us comparing her current size. Our doctor appointments were a breeze- weigh in, listen to her heartbeat, go about the day. Everything seemed to be going great!

Then there was the swelling.

In mid-January I started to swell, mostly in my feet and legs but eventually it would spread to my entire body. I did all the things the doctors suggested - I was wearing compression stockings day and night, drinking a gallon of water every day, elevating my legs under my desk at work and soaking in an epsom salt bath each night. Yet nothing helped. My blood pressure was always normal, there was never even a hint of protein in my urine samples so their only explanation was that I must just swell more than other women during pregnancy. 

Monday, February 24, 2020 I woke up very early in the morning with stomach pain. At this point I was used to feeling uncomfortable from the swelling so I tried to write it off and go back to sleep. I tossed and turned until finally I gave in and got up. I tried soaking in the bath thinking that maybe it would help me relax. It didn’t help. 

No matter how hard I fought to continue getting ready for work and push on with my morning routine, the pain just increased. I was to the point where I couldn’t even stand up straight. This entire time I was texting back and forth with my doula who finally urged me to call my doctor. I got the nurses triage line and after describing my pain was told to make my way into Labor & Delivery just to get checked out and make sure everything was ok. I called Jim who left work to pick me up and off to the hospital we went. 

Once we arrived we were taken back to triage by the sweetest nurse, Jenna. She had an incredibly calming sense about her which looking back was exactly what I needed that day. She took my vitals, I had some labs drawn, she had me leave a urine sample and gave me some sympathy for my swollen legs and feet. (I laugh about it now…) Then we waited. 

She came back with news that all of my levels were slightly elevated including my BP and there was a small amount of protein in my urine. Nothing too alarming but that I was going to be admitted for observation for the rest of the day and that, just in case, she was going to give me a shot of steroids to help with Piper’s lungs. We were then taken to a delivery room where we settled in for what we thought was the day. I was set up for a fetal nonstress test and a 24hr urine analysis. Throughout the day I had a number of draws done so my doctor could monitor the direction of my labs and was told that with my 6pm draw some big decisions were going to be made, we were either going to be discharged in the morning or induced to deliver.

I will never forget that moment. It was about 6:20pm and I was sitting on the bed, Jim was on the couch to my left and there was a quiet knock on the door. The nurse that admitted us earlier that morning walked in looking me right in the eyes and I knew. I said as I choked back tears, “we’re having a baby aren’t we?” She sat on the bed, put her hand on my knee and with some sadness in her eyes but a smile on her face said “yes we are!”

This was the moment I was diagnosed with HELLP Syndrome. 

I had never heard of the term, I didn’t know exactly what it meant but was also instructed not to google anything - looking back it was for the best - I needed to stay calm and focused on getting our baby girl here safely.  Remember how I mentioned my biggest fear in life was dying while giving birth - well it was literally knocking on my door now and I had no idea.

HELLP Syndrome refers to: Hemolysis, Elevated Liver Enzymes, Low Platelet Count and is a life-threatening pregnancy complication considered to be a variant of preeclampsia.

Right away I was hooked up to a Magnesium drip to help stave off the chance of seizure and stroke, was given meds to start labor, an IV for fluids and antibiotics. I had a catheter inserted which meant I was now limited to my bed, the one thing I did not want to happen during my labor. Because I was stuck in bed and with severe swelling I had intermittent pneumatic compression sleeves on my legs as well to help with blood clots. 

At this point my only goal was to get my baby girl here safely and, if possible, deliver her vaginally. My doctor knew my wishes and said that as long as I stayed stable we would do everything we could to make that happen. 

Over the course of the next 39 hours things continued to progress, semi-slowly but I stayed stable. Jim and I watched entirely too much Chicago PD & Fire, numerous movies and I should have counted the number of cups of ice chips I ate because it would have been high, I’m sure! In fact, things were going so well that by the time I had my 30-something needle stick for a lab draw my labs were coming back down to a more normal range so my magnesium drip was cut in half! 

By Thursday morning I was still not fully dilated but when my doctor came in for a cervical check (still at only 7cm) she told the nurse to “call in the team!” She said we were having a baby right now and that if she were to come out crying that they would place her right on my chest for a moment. 

At 10:12am, Thursday, February 27th, 7 weeks ahead of schedule, Piper James Finn entered this world crying loudly and I’ve never heard a more beautiful sound. They placed her on my chest for a moment before they whisked her away to the NICU. 

Surprisingly enough I remember all of this up to this point. The days in bed on Mag, when most people say they are foggy and feel like they were hit by a truck- I felt OK considering. Once I delivered Piper though, that's where my memory gets foggy but also when things started going downhill. 

Shortly after delivery it was decided that I could come off my Mag drip, the catheter could be removed and I could go see my baby girl! I was so excited. I had some abdominal pain but I had also just birthed a child so I figured it was normal. I mentioned it to the nurse who proceeded to give me a single Tums - gee thanks. I showered, I think and put on some normal clothes and then…. 

I don’t remember. 

I hate saying that because isn’t the day your baby is born supposed to be the most amazing day? The day that you will never forget? That day comes to me in pieces and the one thing I remember the most is the pain. I don't remember going in to see P for the first time in the NICU - if Jim hadn’t taken a picture I probably wouldn’t believe you that it happened. Even as I write this I’m not even certain that this was the progression of the day - maybe I actually met her before I showered? Did I even take a shower? I don’t even know.

What I do know is that the pain in my abdomen was getting worse and no one was doing anything about it. By 7pm that night I was doubled over in the bathroom trying to breathe through the pain when our recovery nurse had one of our L&D nurses come to check on me, thank God! I truly believe that Mercedes saved my life that night. She had been with me through most of my laboring and knew that what I was experiencing in that moment, and the way I looked was, in her words, “worse than you looked 13 hours into labor”. She immediately was on the phone with my OB, sounding the alarm and getting us answers. 

While she was doing this I was on a mission to be with my baby girl so down to the NICU Jim and I went. This is one part of the day that I do remember. We had just gotten settled into a chair next to Piper’s isolette and they were going to let me hold her - I was so excited and that was all I wanted. As they were getting ready to hand her to us I just kept saying “I’m going to get sick, I’m going to get sick!” The nausea that overcame me was unreal. At that time, an ultrasound was ordered along with another round of labs. The labs came back showing that my liver enzymes were rapidly increasing and my platelets were continuing to drop. 

Now, the one thing I was told about HELLP Syndrome was that in order to “fix” it we had to deliver the baby - it was the only way. I just assumed that now that Piper was here that meant I was in the clear. I guess I was wrong. 

My case of HELLP Syndrome did not improve, in fact it was worse than when I was admitted. 

I was put back on the Magnesium drip for another 36 hours which meant another catheter and that I was stuck in bed again, away from Piper.  

Jim and I were forced to have conversations around the possibility of me being transferred to another hospital and if he would come with me or stay with the baby. Still at this point I did not fully grasp the severity of my situation and how sick I truly was. 

My body was literally shutting down and I didn’t even know it. 

I thank God every single day that my body stabilized and that I was able to come out of this HELLP Syndrome diagnosis alive. Without fully knowing it - I faced my life’s biggest fear and I’ll continue to share my story because I know now that not every mother that is diagnosed with this is able to.

HELLP Syndrome took so much from our family. It took away the chance to carry our daughter full term, because of its effects and the high risk of this happening again (possibly even worse) it took away the option of our family expanding beyond one child. Instead of a peaceful birth experience, ours was filled with anxiety and fear both for myself and most especially for my husband who stood by my side every step of the way and never wavered. His strength to this day amazes me. However, it also gave us so much! It gave me the opportunity to connect with amazing women across the world who continue to fight this disease and advocate for a cure. Our NICU journey has allowed our family to connect with so many others that have experienced a similar journey and brought Project NICU into our lives. Regardless of everything that has been taken away - so much more has been given. 

To learn more about HELLP syndrome, visit The Preeclampsia Foundation at: www.preeclampsia.org/hellp-syndrome