Surviving HELLP Syndrome

When my first pregnancy was winding down into its third trimester, I remember thinking what a relatively trouble-free time I was having. I had heard countless horror stories of constant nausea, weeks of bed rest restriction, and every ache and pain imaginable. Sure, I had endured the first several weeks in a routine of breakfast, brushing teeth, throwing up, brushing teeth again and heading off to work. But I was healthy, relaxed, and relatively comfortable, and seemed to be free of any complications. My little guy was healthy and strong, kicking so wildly we used to refer to him as “rearranging the furniture” in there. I had decided to start my maternity leave 4 weeks before my due date to be sure I was physically and mentally prepared for the challenge of labor ahead.

I had reached week 40, cause for celebration as my due date was only a couple days away. I leashed the dog and went out for my usual 2 mile walk – I was hoping to convince labor to start any time now. Returning home, I had no sooner set foot in the door when the phone call came. My midwife had received some troubling test results regarding my platelet count and liver enzymes, and advised that we would need to induce labor. I asked, “Do I need to call and set up an appointment?” It was then I sensed the urgency in her voice. “No, you need to come to the hospital RIGHT NOW. And I’m afraid I won’t be able to deliver.”

At the hospital, I learned I was going into what is called HELLP Syndrome – characterized by (H) hemolysis (the breaking down of red blood cells), (EL) elevated liver enzymes, and (LP) low platelet count. The concern then became the risk I would have of bleeding and not having the platelets to clot properly. The attending nurse looked at my birth plan and saw that I wanted to avoid an epidural, and said, “Oh, good.” This was all the information I was armed with in a rush to deliver my first born. Somehow between my afternoon walk and the evening in the hospital my feet, hands and face swelled up like a water balloon – the telltale sign of pre-eclampsia, and, as I later learned, a precursor of HELLP. I wouldn’t know until my second pregnancy that epidurals are contraindicated if your platelet count is too low. My relatively easy pregnancy was “avenged” with the curse of back labor, and with no epidural I saw flashes of doubt that I would survive the pain. I did, of course, and my son Lucas was born beautiful and healthy in April of 2001. Within hours, my platelet count returned to normal and I was home the next day.

When we decided last year to conceive again, I remembered the talk about this “HELLP” thing and was sure to discuss it at my prenatal appointment. My doctor referred me to an excellent OB-GYN who was the high-risk specialist in the area. As it turns out, he was the doctor on call who ended up delivering Lucas when my delivery became too high-risk for the hospital to allow my midwife to do the honors. My doctor advised that, although I was at risk again, there was absolutely no reason to become pregnant again.

Soon into my second pregnancy I received several comments about how lucky I was to get in with Dr. Cook. I quickly discovered why. He was understanding, trustworthy and definitely knew what he was doing. He kept a strict eye on my platelets and blood pressure. If he hadn’t, I might not be here today.

My second pregnancy was nothing like the first. Everyone kept saying it must be a girl this time, as the experience was so completely different. The morning sickness was an all-day adventure for the first three months. The colds, flu and sinus infections came one after another – about a dozen in all. And then there was the stomach flu. And the strep throat. And the two UTIs, and the kidney stone. Week 20 arrived and, sure enough, we discovered we were expecting a girl. Although my body, especially my heart, was struggling, my blood pressure continued to stay well within normal range. A couple weeks later, Dr. Cook took a platelet count to see how things were going. At the start of the pregnancy, my count was at 250K (normal range is 150 – 450,000).

Week 28’s platelet count came in at 152K, and the good doctor laid out a plan for the next couple months. He would keep watching my platelets, and if they dropped too low before week 36 he’d put me on cortisone to bump it up. Any time after week 36 we would induce, the later the better, of course. I had been diligently doing my homework, reading about HELLP and low platelets. I reproachfully asked about the possibility of an epidural, remembering the horrific back labor I had endured. He assured me that we would intervene before it came to that point.

Two weeks later, I was surprised with two nosebleeds within a 10 hour period. The doctor sent me in for another count to find it had dropped to 142K. Another week later saw 131K. Dr. Cook educated me about GTP – gestational thrombocytopenia. With GTP, the platelet drop is the only symptom, and it usually stabilizes around 80 – 100K. Once the baby is born, the count returns to normal. We wondered and hoped that this was all that was happening and that my liver would not be affected.

The next couple weeks brought a roller-coaster of medical news – the platelet counts rose and fell, keeping us hopeful and guessing, and at week 24 my baby flipped into breech position. I tried every trick in the book to get her to turn again. Who knows what did it – the headphones pumping soothing music into my abdomen, the vocal coaxing of my husband and son, the exercises and positioning – but something worked and she turned the following week. I like to think it was my intuitively warning her that if she didn’t, she’d be causing some big trouble. That next week also saw another platelet drop, 127K. Oddly enough, it also brought wildly flashing lights in my field of vision, so much so that I could not see out of one eye. It looked like a migraine about to start, but the flashing would subside and leave me headache free. I would continue to see stars or flashing lights every now and again up until the birth.

By week 36 (and 114K) I was a regular at the blood lab with my twice-weekly “pokes” and started coming in to the hospital once a week for non-stress tests. I was amused that the nurses referred to the NST as the “nasty”. After my first wildly successful NST, we got our first platelet count result below 100. My pre-eclampsia lab work was still coming in normal, so my doctor optimistically predicted a full term (if not “then some”) baby. I had been battling the latest sinus infection and was ridiculously elated to have the extra time to recover and do some of that nesting that was calling me. I scrubbed the house top to bottom while toughing out the virus, knowing I’d have a chance to recover in time for labor. I had been sleeping in 1 or 2 hour stretches here and there, and had a realization one 3am in front of C-SPAN that I would be getting better sleep with a newborn!

Week 38 arrived and I trudged in to the hospital for my routine “nasty” and blood poke, still fighting off the last of that sinus infection. As I sat in the waiting room, a waiting grandfather-to-be approached and asked if I was having my baby today. I laughed and said, “I hope not! I have two weeks left! I am just here for an NST.” The man went on to describe his daughter’s routine NST when they discovered abnormal liver results and admitted her on the spot for an induction. My intuitive nature should have seen the blatant foreshadowing of what was to come.

While I was hooked up to the NST machine I could overhear the on-call doctor in the hallway talking about someone’s blood test results. I thought the odds were very good they were discussing mine and strained to hear. The doctor was saying, “No, this is not good. Not good at all. What was her last count? Oh, no we need to take care of this now.” As I lay there, frozen in fear for what seemed hours but in reality was only 15 minutes longer, my mind raced with what could have possibly happened over the course of 3 days, since my last round of tests. I thought again, as I had several times over the past few weeks, how lucky I was to have such a caring and competent doctor watching so closely over me. The on-call doctor finally entered the room with a grim face. My platelets had dropped to 83K and my liver enzymes had suddenly skyrocketed out of control. They also detected a +1 protein spill, indicating pre-eclampsia. He said, “We need to get this baby delivered.” I asked if I could go home and get my hospital bag, and he reiterated, firmly, “No. You have about 3 or 4 days before this becomes fatal. We need to do this NOW.”

As they quickly got me into a labor and delivery room, into a hospital gown and back onto a fetal monitor, I worried about the epidural. The doctor sighed, shook his head, and said it was up to the anesthesiologist but he had serious doubts. Dr. Cook just so happened to be out of town, just when I needed him most. Fortunately, he was flying back in the following day, and as it happened, the induction process took as long to really take hold. Soon my faithful doctor was by my side with reassurance and optimism. He gave me the green light on an epidural, which was a great relief. I had wanted to avoid one if I could, but just knowing it was there if I needed it was such a boost.

I started the pitocin around 8:30am. My blood pressure jumped up early that evening, just when I was begging them to let me get up and walk around, as I was on constant fetal monitoring and IV. They let me do a few loops around the childbirth center and I found new positions every couple contractions. Then at 5:15pm Dr. Cook broke my water and that really got the ball rolling. 3 hours later I was at 3cm and although the contractions were of course ridiculously painful, I did not experience any of the back labor I had with my first and realized, “Wow, you get BREAKS between the contractions! I can do this!” So I shooed away the anesthesiologist and opted to “go natural”. I kept on top of the pain with breathing exercises and was able to crack jokes between the contractions – at one point my husband made me laugh so hard the monitor was jumping out of control and I had to make a real effort to stop laughing to get relaxed before the next contraction came on. After a while I made it to 5cm, 100% effaced and got a cheer around the room. After the next contraction I thought, this is coming quick and grabbed my fast-acting nasal spray (I was still feeling the tail end of that sinus infection) and ended up getting a quick nosebleed. How convenient, I thought. I stopped it okay, and about 3 or 4 contractions later I announced I was feeling ready to push. The nurse was skeptical but checked me out and sure enough, in about 15 minutes I had gone from 5cm to 9cm and everyone rushed in to prep for delivery! Little Chloe arrived at 10:40pm, pink, healthy and wide eyed, crying a little but mostly studying all the newness around her with serious intent. What was a very trying pregnancy turned out to be the most relaxed and beautiful delivery. I firmly believe that being better informed and under the right doctor’s care made all the difference.

They put me on a magnesium sulfate IV overnight for the pre-eclampsia and wow, I do NOT recommend that. I was seasick and burning up all night. By morning we were all oh-so-ready to get out of there, so I jumped in the shower, choked down some really revolting hospital food and got dressed. The day was full of excitement and visitors, and we were relieved to get the green light from the pediatrician and some blood tests all coming back great. As quickly as it had come, the HELLP syndrome had passed. My blood pressure returned to normal as well. Before long, I was discharged and home with my beautiful, tiny, hungry little princess. Two weeks early, she was born slightly underweight at 5 pounds, 7 ounces but in a short 3 months she was already hitting the 50th percentile and flourishing beautifully.

What was a completely foreign concept introduced to us so suddenly at the end of my first pregnancy became an integral part of my care for the second. The reassuring guidance of my wonderful doctor made all the difference. In those last few weeks, I spent a lot of time digging and researching, trying to find stories of mothers with similar experiences, as the worry mounted with each platelet drop. To anyone discovering HELLP Syndrome the way I did, I cannot stress enough the importance of staying well informed and keeping a close eye on your lab work. If you are uncomfortable with the care you are receiving, by all means, find a new doctor! Knowing you are in good hands makes what can be a frightening ordeal something you can not only overcome, but can transform it into one of the most rewarding experiences of your lifetime.