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HELLP! What to Expect with this Life Threatening Pregnancy Complication + How to be Your Own Health Advocate

If you are reading this, I want to say welcome and I am glad you are here. This post does not relate to anything Baublerella creates but when I started the brand, I wanted to use its voice to create confidence in women. Given that, I am going to file this under a new series aptly titled the Confidence Chronicles

This story is very personal and my goal in sharing it is to encourage women to take the reins on their health and encourage you to have confidence in yourself and learn when to follow your intuition and take action despite what the professionals are telling you.

Before I get into details, let me preface everything by saying this story is about a life-threatening pregnancy complication called HELLP Syndrome. This is also a long post so if you read anything, then read the medical details below. I share the longer story because sometimes we don’t see ourselves in stats but can see similar experiences through the eyes of others that have been there before us. If you either do not want children or are done having them, I encourage you to continue reading in the event your knowledge can help a sister, daughter, or friend.

What is HELLP and how can you spot it?

HELLP stands for:

Hemolysis (breaking down of red blood cells)

EL (elevated liver enzymes)

LP (low platelet count)

what is hellp syndrome

This rare syndrome has a reported mortality rate as high as 30% so it’s critical more women know about this condition and symptoms to look out for. High blood pressure and protein in urine are medical indications to keep an eye on and symptoms include one or more of the following:

  • Headache
  • Nausea/vomiting/indigestion with pain after eating
  • Shoulder pain or pain when breathing deeply
  • Bleeding
  • Changes in vision
  • Swelling
symptoms for hellp syndrome

Now that you have the medical knowledge, here is my story. I’m an extremely private person and when I sat down to write this post, my BP rose significantly because I have such intense emotions around this traumatic moment in my life, but if my story helps just one woman it was worth it to share.

So, who am I health wise and what are my past experiences?

I am a healthy, 34-year-old woman who had what you would call a perfect pregnancy the first time around. During my second pregnancy, from the beginning it was much harder on my body because of my little boy’s sheer size. I am 5’ 4”, 115 pounds and was carrying a little boy that ended up weighing 8lbs 10oz when he was induced 3 WEEKS EARLY.   

After delivery, I was told by my doctor that because of my good health they didn’t even consider HELLP to be something I would have despite the symptoms I was explaining to them. After my recovery, I researched HELLP and quickly saw where I had EVERY SINGLE SYMPTOM on the list and still was dismissed. Doctors disregarding my symptoms as “oh, that is just the third trimester,” which allowed my case to advance to a SEVERE stage of HELLP. This is considered Class I which is platelets under 50,000 – mine were 24,000 when we finally made it to the hospital and dropped to 18,000 after delivery.

When did I start to take action?

Towards the end of my pregnancy I was experiencing immense pain and started to feel in my gut that something was wrong. I had been experiencing symptoms related to HELLP for a few weeks, but it was during my 36th week I could no longer take the pain. I was sleeping in our guest room because I was up all-night tossing, turning, and moaning from pain and had little to no energy. It was all I could do to get dressed in the morning and take my little girl to school.

On Thursday, October 31, 2019 I attended the preschool Halloween parade and came straight home after to rest. I vividly remember sitting with my mom while eating flame-grilled fajitas at our kitchen island and saying, “I know I’m really pregnant, but something just doesn’t feel right. This isn’t normal.” I recall just wanting to breakdown and cry but held back because I didn’t want to worry my mom any more than she already was.

She urged me to call my doctor’s office and I made an emergency appointment for later that day.

What was shared at the doctor’s office and how was I treated?

At this emergency appointment I shared that the pain I was experiencing was radiating throughout my entire torso and I was having a lot of pain in my shoulder. My blood pressure at that appointment was 142/76 which I voiced concern over because my blood pressure was always much lower. I was told the high blood pressure was typical at this point in pregnancy and it could be higher because of the pain I was in. I quickly read off my previous blood pressure readings to support my concern, but they were dismissed. I was told to drink Gatorade to help with my muscle pain and was prescribed hydrocodone.

I am not a fan of Gatorade and do not like taking medicine – I even avoid over-the-counter Tylenol – much less such strong pain medicine while carrying my child. I asked how I would know when to come in due to labor and was told if I take pain medicine and within a few hours the pain has not subsided then to call.

What happened next?

The next day I woke up and the pain from my shoulder was so severe my right arm was going numb. I scheduled a massage and drank some Gatorade as prescribed but neither helped. I went to a belated birthday lunch with a dear friend despite wanting to curl up in bed and plugged in my heating pad at the restaurant to alleviate the shoulder pain. Later that day, I wrote another message to my doctor about the pain and provided an update.

On Saturday it was the fall carnival at my little girl’s school so once again, I slapped on a smile and tried not to complain. As the day progressed, my legs started to swell, and my right side was aching so badly I had a hard time standing up straight. That night, I took a warm bath and listened to a brain wave meditation to try and get my blood pressure down naturally without having to take medicine.

I woke around 12:30am and took pain medicine to try and get a few hours of sleep. After watching Holiday in the Wild on Netflix I was still in terrible pain and went to the kitchen to take my blood pressure. The reading was 164/87 and I thought my heart was going to pound of out my chest. I called my doctor to ask what to do and was told to “take a hydrocodone and go back to sleep.”

high blood pressure when pregnant

When I decided to follow my gut and take the reins on my health.

I immediately hung up the phone and called my mom to come over and stay with our little girl. I woke up my husband and said, “we have to go to the hospital now.” Within 15 minutes we were out the door and shortly after I hobbled into the hospital wearing my robe, leaning over to the right, and using the handrail to move my body along the long corridor.

Over the next hour, the nurses moved quickly as they recognized my symptoms immediately and started running the appropriate tests. An hour later we were inducing labor as that is the only way to start recovering from HELLP and was immediately started on a magnesium drip to prevent stroke.

How was the road to recovery?     

HELLP typically resolves itself once the baby is delivered but my platelets continued to drop. After delivery, my little boy was taken to the NICU to ensure he did not suffer any issues from the HELLP or the magnesium. Luckily, my little boy was not affected by the HELLP but sadly, some babies are.  

can babies be affected by hellp syndrome

I was moved to the critical care unit, which is like the ICU for post-partum. I don’t remember much that first day due to the magnesium and all the pain from my liver being distended so severely. We did not see a doctor all day even though my condition was worsening, and we couldn’t get the pain under control. Since I had been in pain for weeks now and I’d never heard of HELLP before that day, I demanded a doctor come visit our room so I could talk to somebody that knew my case. Around midnight a doctor from the hospital came in and we were finally able to get some answers. She said that it was “life-saving” that we came to the hospital when we did, and she continued to check in on me through the next few days. Since I felt unheard for weeks, this simple act of coming to our room for 10 minutes that night meant everything to me. At the same time, I started to panic as I learned the severity of the situation and cried throughout the night from fear I may not come through it all.  

Over the next 3 days I was poked and prodded every 1-3 hours and was assigned specialists to review my case. It was abnormal my health was still declining and by the end of the second day I couldn’t lift my arms and my vision was going in and out due to the magnesium.

hellp syndrome stories

Even when my little boy was brought in, I could only hold him for a few minutes before my arms gave out, which was heartbreaking. At this point they started giving me steroids to jumpstart my platelet production, which caused my body to swell to the point my eyes were almost shut. I had been on a strict liquid only diet consisting of water and hospital broth, which were essentially little sodium packets mixed with hot water. I’m a nutrition enthusiast and believe in the power of food to heal so I was afraid my body wasn’t recovering due to lack of nutrients. I asked for my family to bring some bone broth from our local health food store and started drinking it over the next few hours. My levels immediately started to go in the right direction. Had they not I would have been given a blood transfusion which I wanted to avoid if possible.

I’m not saying the bone broth is what did it, but I certainly think it helped give my body the little strength it needed to start regulating itself. I remained on bed rest until Tuesday, November 5 and was then able to remove the epidural, and catheter and move to the post-partum wing. You may be wondering why my epidural was still in 2 days after giving birth, and the answer is this: If your platelet levels are below 80,000* then it’s unsafe to administer an epidural because you risk bleeding into your spine. Unfortunately, the anesthesiologist was not told my platelets were at 24,000 when he gave me an epidural or I would have never received it. We were not able to remove it after the delivery because I was still at risk for bleeding into my spine given my platelets dropped down to 18,000.

We continued having problems keeping my blood pressure under control, but I was now out of the woods and moved to a post-partum wing. This same day, my son was discharged from the hospital two days prior to me. During the last part of my hospital stay, I felt so blessed to have all my nurses and doctors throughout the week coming to my new room to see how well I was doing because they “heard I got my color back.” They laughed with me over things I’d said the first part of the week and said it was probably best I didn’t realize what was going on. Thanks to my team of specialists and a lot of prayers, I was finally able to go home to my family on Thursday. Although the dreams of my little girl meeting her brother in the hospital had been shattered, her reaction was so much sweeter when we were all reunited that day.

hellp syndrome treatment

Thank God it was over, right?

Just when I was getting settled, the morning after returning home I woke up with fever and a pain in my back so sharp I had trouble walking. I was taken back to the doctor immediately where it was discovered I developed a kidney infection from the catheter at the hospital. My fever continued to rise over the next 12 hours and spiked at 103.6 degrees. The doctor on call accelerated my dosage of antibiotics to get them into my system faster and the fever started to decline over the next day.

The next few weeks were tough both physically and emotionally. Due to the stress of it all, my neck locked up completely to the point I could not move my head at all, and my entire neck throbbed in pain. I started to panic because this had never happened to me before and I was worried it had something to do with that epidural staying in my spine for so long. It was back to the doctor yet again where I was prescribed muscle relaxers to provide relief and help with the pain. A week and three massages later, my neck stopped throbbing and loosened up to where I felt normal again and could move it freely. After all of this, I had little to no energy but 6-8 weeks later I started to feel like myself again.

What now?

It has been almost a year since my son was born and I am finally able to talk about things without getting angry and frustrated by my experience. While this syndrome is considered extremely rare, the few close friends that know my story have now had people in their lives diagnosed with HELLP. I don’t know if it is on the rise or that more people are talking about it, but I hope this story has helped inform you on not only what to look out for but what you may experience along the way.

I am a HUGE advocate for taking matters of your health in your own hands and not being afraid to ask questions and push back on the answers. My Dad is a doctor as are my brother-in-law and his wife so they can attest to me asking ALL the questions and pushing back all the time!

Below are 4 ways I believe you can be your own health advocate. If you found this story helpful, please share it with your family and friends so we can communicate these risks to as many women as possible. Thank you for listening and I would love for you to follow along my journey balancing work, motherhood, and self-care @Baublerella!

5 Ways to Be Your Own Health Advocate

  1. Listen to your body.
  2. Be prepared with a list and ask your doctor questions.
  3. Research what doctors tell you & do not be afraid to reach back out with concerns.
  4. Get a second opinion.
  5. Don’t ignore your intuition.
5 ways to be your own health advocate 

Medical facts about HELLP pulled from www.preeclampsia.org.

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