As I was scanning one of my groups in Facebook today, I caught the story that Rachel Heidecker was sharing with us about her experience…..I couldn’t help but read on, I was enthralled by her telling of it. First in the post space, then paragraph by paragraph in the comments section…. It was laid out for us bit by bit, like chapters in a book that you can’t wait to turn the next page to……and we were hanging on every word. She had to stop writing for a little bit because simply recalling and writing everything still drained her emotionally (and perhaps because it was ungodly late/early in the morning, but still…).
I didn’t have HELLP, but I know some women develop it, and I thank goodness that I was only diagnosed with preeclampsia. Does that sound weird? Not to me, because II couldn’t even imagine what it would be like to have it develop into HELLP and all the complications that it brings…….until now. Luckily her story had a happy ending…..but some do not. My eyes are a little wider open, and I am wanting to share this with you all out there, partially to give a little more insight about the symptoms to take notice of, and partially because we are still working to understand the trauma that some of these pregnancies create for women…..It’s a long read, but worth sharing.
Rachel, I am honored that you’ve agreed to let me share this with the public. You have overcome a tremendous amount, and as painful and exhausting as it was to live through, recall and write down, you are brave to do so, and with any hope, your story will also encourage awareness, and offer still inspiration in the face of darkness. So without further ado……
It’s 2 am and I am wide awake. Thought this would be a good time to share my story. It started at 29 weeks gestation (almost 5 years ago) I woke shivering…My whole body shook, I got up and put on 2 of my husbands hoodies and crawled back into bed with 2-3 blankets on top at the same time. I continued to shiver. I assumed i had a fever (being from a nursing background) I felt my body, I was hot. Like the hot dry skin you feel on your children when they have a fever. I didn’t get out of bed to check my temperature. I was too cold. I laid there in silence feeling my baby move happily in my tummy. I hadn’t been sick, no cold or sore throat, I thought “why would I just spike a fever spontaneously?” Odd. I soon fell asleep as the trembling subsided as my body regulated the temperature on it’s own. What does this have to do with preeclampsia you might ask? The next morning i woke with a splitting headache. As I got to the bathroom, and sat, I noticed my feet and ankles were quite puffy. Odd, I thought again. Must be just the pregnancy causing this as I only had a few months to go. As the day went by my headache went away, but the swelling stayed. Fast forward a few weeks….. I attended my appointment with my doctor (my family practitioner) peed in a cup, stood on the scale (as the nurse checked and double checked the scale and frowned as she wrote the numbers down). The doctor said you have some protein in your urine and you gained more weight than we would’ve expected you to since your last visit, however your blood pressure is fine. I want to see you in a week. Ok, fine. Everything must be good… I mean they know what they are doing right? Fast forward one week… More weight gain… More protein more swelling and an elevated blood pressure this time. My doctor started me on labetolol and I was sent home. I continued to work as a nurse (12 hour shifts) even though I was told to take it easy. I know, dumb on my part. The weeks went by… More weight gain… Higher blood pressure…. More protein in my urine.. Still no referral to a specialist. I look back now and wonder why I didn’t demand a referral. Hind sight is 20/20 I suppose.
The labetolol didn’t seem to be doing the trick, at my next visit my doctor upped the dose and the frequency and advised me to get a blood pressure machine for myself. So I did. I watched it closely, everyday. I started to notice in pictures people had taken of me that I was quite swollen. And… Despite being very thirsty, I didn’t pee very much. Then the diarrhea began. I thought, oh great now I have to have diarrhea too?!!! My husband’s grandfather died at the end of January 2010. I attended the funeral in flip flops as that is all that I could get on my badly swollen feet. My due date was Feb 19, 2010. His funeral was January 25 2010. At this point I felt… How can I go on any longer??? Still my baby danced happily in my tummy… The only reassuring thing in the whole scheme of things.
My doctor then made me quit work and go on bed rest. Things just weren’t improving any… Just getting worse. I remember him saying… We have to keep this baby inside as long as possible!! Still no referral to a specialist. So I reluctantly started my mat leave roughly 4 weeks early. I knew we were short nurses at work, but I had to do what the doctor said. I spent the next few weeks, checking my blood pressure, resting, reading, and I soon become very bored. I can’t sit still usually. So since my husbands birthday was Feb 4, I thought I would plan a party for Feb 5 (a Friday). The party went well, at the end of the night I had a very bad headache and started to see flashes of light in my peripheral vision. My blood pressure was not bad (125/68) by the time I had went to sleep after the party. My husband reassured me that I had likely overdone it and that I would feel better by morning. He rubbed my back and my feet and legs with lotion (cause at this point I felt like my skin could not stretch anymore from the swelling) I was 38 weeks that night, on the nose.
I woke up the next morning… 6 am to be exact on Saturday feb 6, 2010) I had extreme pain around my abdomen (right under my breasts, it felt like someone had a rubber band wrapped around me and was pulling it tighter and tighter). Then I ran to the bathroom an puked. The pain did not subside… Nor did the nausea. Checked my BP on my home machine… 250/125. OMG. I remember staring at the digital numbers and thinking …. No this can’t be right. My training told me to recheck on the other arm. So I did… No better, still dangerously high. I woke my husband, it’s time I said. I knew it hasn’t labour the pain did not come and go like labour contractions should be. I tried to get my baby to kick… Or move in anyway. She did not. She was still. (She is alive and well today, by the way so don’t panic!)
On the way to the hospital I continued to throw up in an ice cream pail from the party the night before. Then my nose started to bleed. I don’t remember much from here on in, I remember the bright red letters that spelled “EMERGENCY” as my husband wheeled me into the emergency room on a wheelchair as I kept my head in my pail to catch my vomit and the trail of blood coming from my nose. I remember the nurses saying lots of things STAT, and it’s going to be ok honey… I remember being transferred to a bed, undressed, hooked up to an IV and a baby monitor. Blood was taken, a Foley catheter placed in my bladder. I was in so much pain and so nauseated that I closed my eyes and listened…
I heard things like “baby is fine but a little Brady” “I can’t get a line, she is too swollen” ” get anesthesia and ICU in here STAT” “her blood work isn’t good… She is in HELLP” (for those of you who don’t know what HELLP is I will explain what it stands for at the end of the story) “ok Rachel, we are going to have a baby today!” The conversations continued around me as I kept my eyes closed. Magnesium drip started (to prevent seizures), fluids started… The remember hearing the urgency in the voices around me. I knew the lingo… I knew I was in trouble. I then wondered.. Where is my husband? I hadn’t heard his voice in a while. I peeked my eyes open and the last thing I remember and saw before my world went black was my husband crying into a nurses arms. Then I heard, “OPEN THE DOORS TO THE OR!!” and that was it….
I awoke… First all I could hear was the rhythmic beeping of my heart on a monitor… I felt the blood pressure cuff tightly squeeze my arm. I felt peaceful.. At ease. I felt my husband’s fingers caressing my right hand. I slowly opened my eyes. I saw monitors… Lots of them and IV pumps… Even more of them. I remember thinking… I’m alive. Then things came back to me… Wait… What happened to our baby??? My husband must’ve saw the urgency in my expression and he just said “she is fine and well… She is in the NICU just for monitoring over night. Your mom and dad are on their way… “. I closed my eyes again. I heard the nurses scurrying around and then I heard a NICU nurse speaking to my husband. She said that she is doing great in the NICU but since I had to have such a fast c section they wanted to keep her overnight for monitoring. Again… My world went black.
Where was I… My daughter was born via emergency c section feb 6, 2010 at 226 in the afternoon. I didn’t get to hear her cry, or hold her right after she was born, I was still under general anesthesia. And then she was whisked away to the NICU before I was even awake. I slept hard that night, despite being in the labour and delivery observation unit where the lights were bright and the monitors and alarms were loud. I remember having all these questions going through my head as different professionals kept coming to my bedside and speaking to my husband and the nurses. Blood drawn every 4 hours, a chest X-ray to assess why my oxygen needs were increasing, IV medications dripping into my veins, but… I was too drowsy to even open my eyes. As I would drift in and out of consciousness I tried to remind myself of this: “you work in this hospital, Rachel, not on labour and delivery, but you work here, you know that the professionals that work here are the best of the best, trust them” I tried to remind myself of this as I would panic. And it worked. I am not a hugely religious person so I didn’t pray. This may sound bad, but I didn’t even think to turn to god in this situation. I kept using my scientifically trained mind to draw conclusions, predict what was going to happen, and listen to the doctors as they talked about the results of my blood work around my bedside… From their conversations I understood I was going to be ok, I would survive this. I just had a long road ahead of me. By that afternoon (feb 7,2010) I was able to see my baby. She was brought to me by the NICU nurse. I didn’t hold her yet. I was too weak and drowsy from the magnesium drip. But she told me what I wanted to hear: “she is perfectly healthy, 7lbs, 8oz. She will be moved to post Partum now where the nurses will look after her and your husband can visit more freely.” I opened my eyes… She was beautiful, an angel wrapped in her light pink blanket. Sleeping peacefully in my husband’s arms. “Have you thought of a name yet mom and dad?” The nurse asked us. In 24 hours I had not spoken a word, but I knew what I wanted you name her. “Her name is Taylor. Taylor Anne”. That took all the energy out of me, mustering those few words.. And I quickly fell back to sleep again.
Before I continue here is a bit about HELLP:
HELLP syndrome is a life-threatening pregnancy complication usually considered to be a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth.
HELLP syndrome was named by Dr. Louis Weinstein in 1982 after its characteristics:
H (hemolysis, which is the breaking down of red blood cells)
EL (elevated liver enzymes)
LP (low platelet count)
HELLP syndrome can be difficult to diagnose, especially when high blood pressure and protein in the urine aren’t present. Its symptoms are sometimes mistaken for gastritis, flu, acute hepatitis, gall bladder disease, or other conditions. The mortality rate of HELLP syndrome has been reported to be as high as 25%. That’s why it’s critical for expecting mothers to be aware of the condition and its symptoms so they can receive early diagnosis and treatment.
I heard all these terms around me as I lay helpless in my bed. “Her platelet count is 23” “explains the nosebleeds” “we have to watch her closely for strokes” “liver enzymes are extremely elevated no wonder she had such bad abdominal pain” the day after the birth of my daughter was a blur. I slipped in and out of sleep, and soon I noticed it was dark again outside. Nurses came in and out checking my blood pressure, asking if I had headaches and if I was seeing double. Phlebotomists drew blood from my veins every 4 hours. New IV bags were hung of magnesium sulphate to prevent seizures. Calcium gluconate IV was given to protect my heart. My c section incision was monitored closely for any signs of hemorrhaging as well as any flow vaginally was monitored to be sure it wasn’t excessive. Visitors were escorted out of my room, Except for immediate family. I heard the nurses say “she needs to be on strict bed rest she is at a high risk of stoke yet, and bleeding… She must rest” I answered questions with yes and no answers as that was what I was limited to. I saw colleagues that I knew come to the foot of my bed, discuss my situation, assess me, pat my shoulder, give me a weak smile and leave. Before I fell asleep that night I thought “how ironic, my colleagues are looking after me now” ICU attendings came to the foot of my bed and were aware of my case in the event that I decided to take a turn for the worse. internal medicine specialists came as well to try to get the right combination of anti hypertensive medications to make my blood pressure drop. Hematology docs came to monitor me for symptoms of a DIC (disseminated intravascular coagulation) I had not shed a tear this whole time. Now, as I lay in that bed for another night in labour and delivery the sobbing started, but not for long as it hurt my incision. So I let the tears run down my face thinking “I should be home with my baby right now, instead almost 36 hours after giving birth to her I had hardly seen her. Then reality hit me… There is about a 50/50 chance I will not walk out of here”.
The next morning (feb 8,2010) I woke to sun shining in my face. I looked around the room and for once I didn’t have to force my eyes to stay open. I noticed the drab colored walls, the angelic paintings on the walls and the sound of the monitors beeping beside my head. I looked at my arms… Full of bruises from the multiple phlebotomy pokes and having next to no platelets… Every poke turned into a huge bruise. My IV was still running and from what I could see from the bright orange med sticker on the small bag was that I was still infusing the magnesium. The last blood pressure on the machine read: 185/95. Still high. Shit. But at least today I was more alert. I could hear my husband snoring in the nearby chair… I wondered if he had slept in that chair for the last 2 nights? The nurse then came in and gave me my meds. Asked how I was feeling and for the first time in 24 hours I spoke to her in comprehensible sentences! She said “we are pleased with the progress you are making, your platelet counts are coming up, your liver enzymes are lowering and the protein in your urine is decreasing as well. Just still working on your blood pressure and getting that to come down. Tomorrow you should be able to go to post partum!!!” I was beyond thrilled. I was getting better! Visitors were aloud to come in that day which lifted my spirits tremendously. I even got to hold Taylor for the first time. I didn’t cry, I just giggled as I held her and attempted to nurse her. (Since my breasts had no stimulation it would be hard for me to nurse her, but with a little determination I got my milk to come in over the next few months and I actually just quit nursing her a year ago… When she was 3😀).
I was then moved to a room upstairs to the maternity ward the next day. My IV’s discontinued and my Foley catheter out. The nurses told me that over the last 60 hours I spent in labour and delivery “ICU” I had peed out over 10 liters of fluid. (As most of you know once the placenta is delivered the body slowly but steadily goes back to it’s normal state, so to speak, and my kidneys worked overtime to get rid of the fluid I had accumulated in my interstitial spaces over the last 2-3 months) after 3 more nights in post partum. We were discharged. I still had the memories of this whole ordeal plainly written all over my body. The massive bruises on my arms and hands, the incision on my lower abdomen from where my baby was pulled from my body in a hell of a hurry (pardon the language) and the beautiful pain of trying to get out of the chair to put my breast milk full baby to sleep In her bassinette. The pain I was feeling brought a smile to my face over the next few weeks at home. I was alive!! I fought and came though this very serious obstetrical complication.
My blood pressure did not go down immediately. I had to be on pills for 3 months afterwards. But today, 4.5 years later, we are all healthy and well and the ordeal feels like only a memory and so long ago. Taylor will go to preschool this September. Does time ever fly by! My husband and I are still in discussions about another baby. I am still traumatized from the last one! We have been to an obstetrician and all she can tell us is… You might have this again and you might not. I guess we have to realize that the professionals that look after us are only human and just because they are brilliant and talented people, they cannot predict the future.
For those reading, if you have questions about preeclampsia / HELLP or concerns, please contact your healthcare provider. The Preeclampsia Foundation website www.preeclampsia.org also has a lot of great information.