Preeclampsia – My HELLP Syndrome Story

300,000 women each year will be diagnosed with Preeclampsia or HELLP Syndrome.

Knowing the signs and symptoms is the single most important thing you can do to increase you and your baby’s chance of survival.

Unfortunately, you can’t always trust the medical community to make an early diagnosis. Preeclampsia, and especially HELLP, are finicky diseases in the beginning stages and often go undiagnosed until the situation becomes severe.

Preeclampsia affects between 5-10% of all pregnancies. HELLP is considered rare, but I have met multiple women that have casually brought up that they had suffered from HELLP.

500,000 infants and 79,000 mothers die from Preeclampsia and HELLP each year.

I don’t think I have ever shared my full birth story on here. It is really hard to talk about in detail….but for this cause I definitely think now is a good time. I am a prime example of why awareness saves lives.

Since my HELLP Syndrome pregnancy, I have developed PTSD and a severe anxiety disorder- Aram and I are both alive.

Pre-term Labor

I remember being around 29 weeks pregnant and going into preterm labor. Brian was working nights and I was all alone. He lived 62 miles away from our house so I had to drive myself to L&D with my sister on the phone with me the whole way there.  When I got to the hospital, they took my vitals and I met “S” my nurse. She was from Ethiopia. I told her we were planning on adopting from Ethiopia, and she sat and told me stories of what it was like there while we waited for the doctor to come in. She told me why her family came to America. Her sister had developed a rare eye cancer and they came to UCLA for treatment. Unfortunately, her sister passed away from her illness. It was clear that her compassion in nursing came from her own experience on the other end of care.

The doctor came in soon after. They gave me terbutaline and released me a few hours later.

A week later, I had been in twice with the same scenario. My sister being on the phone with me the entire time each visit. No one could really explain why I kept going into preterm labor. “Sometimes it just happens,” At this rate, I knew we were going to be in for an early delivery.

Something is wrong

At 30 weeks, I remember noticing how swollen I really was. I was an unhealthy 93lbs when I became pregnant and at 30 weeks I think I hit around 130lbs.  Doctors and nurses said nothing about my weight gain except they were happy I was putting on so much because, “underweight women should really gain more than women with normal BMIs.” Which was completely correct. The only problem was that the weight I was gaining was water weight and no one noticed because of how underweight I was to begin with.

At 31 weeks, I was so swollen I thought they were going to have to amputate my finger to get my wedding ring off. I started thinking that this couldn’t be normal. This never happened to my mom or sister in their pregnancies. I Googled “swollen hands in pregnancy,” and the first 100 hits were all Preeclampsia related. At this point, I had never even heard of Preeclampsia. I called in to L&D and a nurse came on. Our conversation:

me: I think I have Preeclampsia, but I’m not sure

nurse: Why do you think that?

me: My hands are really really swollen

nurse: Do you get a ringing in your ears?

me: Yes (it was happening every day)

nurse: Do you see flashing lights?

me: I’ve been seeing stars lately for no reason. The kind like when you stand up too fast.

nurse: Um… you need to come in immediately.

It was about 11:00PM and I told Brian. Off we went to L&D.

When we got there, my favorite nurse from my first trip there was working, the one from Ethiopia. She came over and hugged me and took a look at my blood pressure. At that point, the other nurses told me my pressures were not high and I was fine. “S” had another opinion. She said, “You need to look at what your blood pressure is normally, and then base it off of how much it has changed. Your pressures last time I saw you were like an athletes, now at 135/88, they are less than ideal. I don’t like this at all.”  They performed a urine test to look for proteinuria.

I, once again, was discharged. They noticed my uric acid was high (a sign that Preeclampsia may be starting) but the midwife I saw gave me antibiotics and told me I had a UTI. I told her I had many UTIs and I know even when the most mildest is forming and I did not feel like I had one..but they didn’t believe me and sent me on my way.

Severe Symptoms

I made it another few days and noticed a dull headache was forming. I went to see a nurse practitioner for a dermatology referral. The tech took my blood pressure and her eyes were popping out, “your blood pressure is REALLY HIGH!” I was over 145/93. I went in to my appointment and the NP said NOTHING about my blood pressure. I figured it wasn’t bad and went home.

My OB appointment was a few days later. The tech was covering for multiple people. I asked her what my urine dip was, “just trace” (meaning not Preeclampsia) I told her my blood pressures had been high. She never came back in to take my blood pressure. I left the appointment and forgot to have her take it. When I got home, my medical record was emailed to me. I saw that she put in a fake very healthy blood pressure of 105/69, which would later come back and bite me in the butt. This was partially the reason I kept getting misdiagnosed.

I made it to my dermatologist appointment, where the tech took my BP and it had made it to 150/98. I decided at that point I better go down to the OB nurse. She took my blood pressure and it was 156/105. She told me I needed to immediately go to L&D and with my blood pressure so high, I shouldn’t walk. Well, this was pre-hypochondriac Jamie, so I walked.

This is where I met Nurse Rudolph. She had me lay down to get my blood pressure unnaturally lowered. It then went down to 138/80. The doctor came in to check me, but she got to him before he could see me. She just said, “She’s fine!” and gave him something to sign without reading my chart.

My mom flew in that day.

The next morning I started bleeding and going into preterm labor. If these doctors weren’t going to notice something was wrong, Aram was going to make them.

We went to the hospital where I had the most lovely Asian doctor and nurses. They worked together as a team, which was great, but since they all spoke Mandarin to each other I felt a little clueless as to what was going on.  However the team took me seriously, and finally gave me the validation I had needed. At that point, I realized I was sick and I was expecting to be sent home again. Luckily because I was bleeding my urine dip came up a misleading “plus 3” (needed for diagnostic Preeclampsia) The doctor looked nervous and immediately gave me a steroid shot in my side (to mature babies lungs for an inevitable preterm birth).

I then was taken into an observation room where I met my Perinatologist. I saw him a couple of times months after my delivery where I found him to be the most kind and ethical doctor. Unfortunately, that would be the only time I saw him during my stay in the hospital.

Feeling Completely Alone

In the days following, I became a nervous wreck. One of the physical symptoms of HELLP is nervousness and anxiety, which I noticed increased significantly right before I found out how sick I was. However, I believe the majority of this came during the time I discovered none of the doctors or nurses believed I had Preeclampsia. My mom and Brian knew nothing about the disease and also trusted the doctors, so I felt like I had lost them, too.

I had a resident doctor who actually thought my nervousness was caused by my blood pressure getting taken every 30 minutes. She then called for my blood pressure to NOT be taken. I also refused any more terbutaline (the perinatologist advised against more due to my heart rate being so high, but apparently no one was reading his orders). The same resident doctor told me that the staff would be mad and essentially hold a grudge against me if I had a preemie baby because I refused the medication.

The single most damaging moment for me was when nurse Rudolph returned, giving me “care” during my time in observation. I remember telling her how I was glad I had made it to 33 weeks and had my steroid shots in case the baby had to be born early due to Preeclampsia. She sat down next to me and said, “Oh Dear, stop saying you have Preeclampsia. You don’t want Preeclampsia. Worst case scenario, you and the baby would die! So stop saying you have that because you don’t.”

She then explained to me that Dr. Rudolph would be discharging me that night, and tried to make me feel guilty because other people who “really needed” the beds in observation could not get in and I was basically taking it away from “people who really are sick.”

I really don’t understand what her motives were behind all of that, but I have never fully recovered from the psychosis that came after realizing I was totally alone. I knew I was sick and I thought, “Wow, they are really going to let me die…”

I was on the phone with my sister in a panic and I remember her and her husband praying for me.

I then had a new doctor walk through the door.

Breakthrough

He came in and sat on the cot that Brian had been sleeping on for the past few days. He introduced himself and said, “Well, your 24 hour urine showed that your kidneys are functioning beautifully (which means I did not have diagnostic Preeclampsia) but how are YOU feeling?” I told him I felt like I was going to die. He then answered with the best words I have ever heard, “You are the best judge of you. We will keep you here and I’m going to run a few more labs.”

At that point, they came in to do some blood work and I began to read 1 Samuel chapter 1. I remember vividly reading and praying.

I was interrupted by two nurses carrying in a bag of magnesium sulfate. The nurses were really calm and sweet, but wouldn’t let me know what was going on. Then the doctor came in.

Doctor: “We have your blood work back. Your liver enzymes have tripled and your platelets have dropped to 120K. I would like your permission for a cesarean.” 

Me: “YES!”

My mom: “There is no way of having a natural delivery?” (my mom was delirious and has no memory of saying this, but when Brian and I told her what she said, she replied with, “Why didn’t you punch me in the face?”)

Doctor: “No, her condition is very severe. We will be operating in 30 minutes.”

Aram is born

It wasn’t even 5 minutes and I was in the delivery room. There was a staff of about 15 people waiting for me (and Aram)- it was weird knowing they had all known about the severity of my condition before I was even told.

Aram was born quickly after. I remember hearing him crying and one of the NICU staff members trying to bring him over to me, but I was groggy from the mag and don’t remember much.

The next few days are a huge blur. I thought my blood pressure was going to go down immediately after delivery, but it didn’t. My doctor was away and I somehow convinced the on-staff doctor to keep me on the magnesium sulfate an extra day.

I remember my doctor frantically coming into my room when he returned. At this point I had turned into a huge hypochondriac and I felt I was the only one that could take care of myself.

Doctor: “Why are you still on magnesium sulfate!?”

Me: “My blood pressure is still really high and I thought I needed an extra day of it.”

Doctor (laughing, kind of): “How were you able to convince the doctor to do this? You know that this is a delicate balance? If you stay on it for too long it becomes toxic!”

Me: “I had no idea…”

Great, so I already almost poisoned myself….

I was discharged and told to come back in two weeks for a blood pressure check. I was not told that most preeclampsia deaths happen postpartum, or to be checking my blood pressure at home. I had to figure this out on my own. I had scary but benign symptoms like weird jerking movements from my brain being swollen…Oh and spontaneous bleeding from my eyes and nose due to my platelets dropping under 100K.

However, my blood pressures were still a cause for concern.  We bought a blood pressure cuff, and made a trip a few days later to the ER where they were so concerned I had to get a CT scan of my head.

I then went to see a GP about controlling my blood pressure. It eventually went down, but I needed a lot of medication to balance it out the first several weeks. My GP knew nothing about Preeclampsia, definitely never heard of HELLP Syndrome (much like a lot of the L&D nurses)- and he was even more confused about how to wean someone off of blood pressure medication.  Once he puts people on blood pressure medication, they are generally on it for life. We had to learn together.

I’m not forgetting about Aram, just saving him for last. There are more deaths of infants from Preeclampsia than mothers. Aram was one of the lucky babies.  Preeclampsia is a disease that leads to a catastrophic cascade of events. Eventually your blood flow gets messed up and your entire body starts to attack itself.  PE babies often have IUGR from the body trying to protect the mother (a balancing game of nutrients in any pregnancy). In my case it chose the baby over me, and my body was still able to hold out to 33 weeks.

He was born with developed lungs (thanks probably to that quick thinking L&D doctor), a healthy weight, and was doing as well as a full-term baby. His sucking reflex wasn’t quite developed yet, but it took about 10 days and he was able to nurse like a pro.

So that was my story. Unfortunately, it isn’t that unusual. Here is an almost identical story (in terms of care) to mine, except this mother did not make it. Her husband wrote this story, here is the most heartbreaking section (at this point in the story she had the baby, was discharged, and home with no instructions):

That evening we went to bed at around 11:15pm. About an hour later I was awoken by her and was told that she “needed my help.” Quite groggy, I took a moment to get my bearings and then accompanied her into our kitchen. When I asked her what was wrong, she said she couldn’t breathe and quickly devolved into what appeared to be hyperventilation accompanied by extreme anxiety and fear. I tried to calm her but it just increased to a point that about 5-10 minutes later I called 911, having determined that it was beyond my scope of understanding. I stayed on the phone with the dispatcher for 7 painful minutes while my wife went from a seated-on-the-chair position to a seated-on-the-ground position to a laying-on-the-ground position. At the same moment that the paramedics arrived, my wife stopped breathing and began to turn blue. Though the paramedics tried in vain to get a pulse and start her breathing again, they ultimately left the house performing CPR on her, heading to the hospital only 5 minutes from our house.

I was told upon arriving at the hospital that they had managed to regain a pulse after 25 minutes but that my wife had most likely suffered severe brain damage from the lack of oxygen. Their prognosis for recovery was grim, with little hope given for any meaningful recovery. For all intents and purposes, my wife had died in my arms on our kitchen floor, her final words being “I love you.”

Here is a video about another mother that died of HELLP:

And this video demonstrates the importance of blood donors out there! Saving so many mother’s lives pre- and post- pregnancy.