Our HELLP journey

Before I was diagnosed with HELLP I had never heard of it before. HELLP is a variant of preeclampsia. It is life threatening to mother and baby if not treated and the only treatment for HELLP is immediate delivery. HELLP consists of 3 things; high blood pressure, elevated liver enzymes and low platelets. After doing (way too much) research on it, I have one conclusion…the cause of it is really unknown. There are some speculations but nothing has been proven. Most often, HELLP comes after a woman has developed preeclampsia which is high blood pressure, swelling and protein in your urine during pregnancy. Women who develop HELLP often have to deliver right away no matter what the gestation and in turn a lot of babies are pre-term. Mine, however, was a little bit different.

I developed HELLP at 38 weeks 2 days, before anyone even realized it. I had no symptoms of preeclampsia AT ALL. I had no protein in my urine, no rapid weight gain, no swelling. Actually everything was normal up until my 37 week apt. At my 37 week apt, I had planned to get an ultrasound to check Dougie’s size, and to our surprise my fluids were really low. But Dougie’s size was great and his heartbeat was right on target. The doc put me on bed rest until my next appointment, ordered me to drink lots and lots of water and wanted to see if my levels would come back up. I wasn’t too alarmed, because we had learned that your fluid levels decrease the closer you get to delivering and we also knew that fluid levels could fluctuate by the hour. The same night I was put on bed rest, I woke up in the middle of the night with some stomach pain. I wasn’t sure what it was but it was intense. Labor pains?? Who knows, I had never been in labor before. I toughed out the pains for a couple days but the pain increased. The pain was so intense but was relieved by Tylenol. The pain was in my upper stomach, under my ribs. It wasn’t on a particular side and radiated through my back. By Friday, the pain was causing me not to be able to sleep so I called the doctor. I was met with the same thing that everyone was telling me. The pain was most likely heartburn or the baby’s foot in my ribs, take some Tylenol and wait it out. Over the weekend, the pain became overbearing. When the Tylenol wore off, the pain was so intense I couldn’t take deep breaths. I was taking as much Tylenol as I could and it would provide relief but not for long. By this point, I know some of you are thinking why in the world didn’t you go to the hospital. And to be honest, I can’t answer that question. Other than to say, I had called my doctor and was told that the pain was “normal”. I thought I was just being a big baby and figured I would be having a baby soon. By Monday the pain was more intense and started radiating up to my neck. I could barely turn my head. I assumed this was because I was sleeping funny. I called the doctor again, told them what was happening and was told to just hang tight because I had an apt the following day.

I was texting friends asking them if this was normal and everyone said they didn’t know. I remember one of my friends asked if it was contractions and I laughed and said “well I don’t know, I’ve never been in labor before!” I knew that it most likely wasn’t contractions though. This pain was not letting up and we had learned that contractions come in waves. And when they stop you know it. Well this was constant and the pain would go away with a Tylenol so I figured it wasn’t contractions.

The night before my doctor’s apt I was googling “stomach pain during pregnancy” and was even brought to a page about preeclampsia. Doug and I both read it and it says very clearly on some sites that the pain is usually localized to the right side. Well, this wasn’t on the right side and not to mention I had NO other symptoms so we concluded this was not what it was. To our surprise, that is exactly what it was.

By the time our next apt rolled around that next morning it was already too late. We were told that Dougie’s heart was no longer beating. At the time, the doctor didn’t know why. He said it was most likely caused by a cord accident or something like that. He did warn us that we may never know what caused it. He had no idea that I had HELLP and asked that we wait until Friday to be induced. I remember thinking “FRIDAY!?” I immediately told him no and told him that I could not live another day knowing my baby was dead inside of me. So I was admitted to the hospital that day.

Once everything was said and done, Doug and I realized that if I had waited until Friday to go to the hospital, I most likely would have died. Even the nurses told us this. My liver was on the verge of rupturing and my blood pressure was rising so high that the possibility of a stroke was very high.

After consulting with a high risk doctor, we now know that HELLP caused Dougie’s death. He was 100% certain of that. He stated that the stomach pain I was having was a symptom, although not a typical symptom. After brainstorming with him, I remembered that a few weeks before I had the stomach pain I did have some right arm pain but had assumed that I had a Charlie horse in it. He said that that was most likely a symptom too but we may never know for sure. He did tell us that my case was extremely rare as I didn’t have any other symptoms, not even protein in my urine, which 99.9% of cases have at least that.

The fear of HELLP again weighs heavily on our minds for the future. We have been told that the risk of getting it again is about 15%-20% but that percentage decreases with the same partner and if you do get it again, you will most likely get it later in your next pregnancy than your last. (This is good for us, considering I didn’t get it until 38 weeks.) We have sought out an excellent Maternal Fetal Medicine doctor and are very confident with our care for the future. Our future pregnancies will look completely different than our first but as long as the outcome is different we will be entirely ok with that.

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