Preeclampsia and HELLP syndrome

Today we are pleased to have a guest post from Beth Frazer, a preeclampsia and HELLP syndrome survivor, and a volunteer with the Preeclampsia Foundation.

I remember the first time I heard the word “preeclampsia:” it was November 10, 2008, and I was blissfully pregnant with twins.  Although this was my first pregnancy, I am a practicing attorney with a propensity to research and so considered myself to be an “educated” patient.  I believed that everything was progressing perfectly.  I thought that my headaches, blurred vision, shortness of breath, sudden weight gain, and swelling were all a normal part of pregnancy.  In actuality, however, these were all signs that my kidneys and liver were shutting down, my red blood cells were destroying themselves, and my brain was swelling.

Fortunately, I was scheduled to have a routine OB appointment that day, at which time a urine test revealed that I was spilling protein.  Several hours later I was diagnosed with HELLP Syndrome,  a severe variant of preeclampsia, and was told that I was dying.  Two days later our beautiful twins were born, 20 weeks premature and too small to survive.  My doctor said that, had my OB appointment been scheduled even 48 hours later I would have suffered a massive seizure or hemorrhage.  I had no idea that my symptoms were actually serious warning signs.

I now know that preeclampsia, often described as a hypertensive disorder of pregnancy or by the old fashioned term “toxemia,”  is a known cause of premature births in the U.S. and is a leading cause of maternal and neonatal death.  It is the reason that a pregnant woman’s urine and blood pressure are tested at every OB appointment.  But I never heard of it before.  I was left physically weak, heartbroken, and completely confused.

I set out to learn everything I could about what had happened to me, and figure out whether it would happen again.  In doing so I found the Preeclampsia Foundation,  and I realized that I wasn’t alone.  I found tens of thousands of women have suffered situations similar to mine, most of whom had also been unaware of preeclampsia before their own diagnosis.

I learned that preeclampsia has no known cause, and has no known cure other than immediate delivery of the baby.  If it is diagnosed early enough, however, preeclampsia can often be managed, allowing the pregnancy to progress a bit further and result in better outcomes for both mother and baby.  I studied the signs and symptoms of preeclampsia.  I analyzed the different ways it presents itself, from the classic case of a pregnant woman whose blood pressure creeps up during her third trimester, to more unusual cases like my own.  I researched the latest tests and theories and medical developments.

And, finally, my husband and I met with our Maternal Fetal Medicine specialist (“MFM”), a high-risk OB, to discuss our future.  We discussed the risk factors for preeclampsia, which include a history of preeclampsia, particularly preeclampsia before the third trimester.  I underwent testing and learned that I might have blood-clotting disorders, which might also put me at risk for preeclampsia.  Nonetheless, my MFM felt that awareness and treatment of these risk factors would allow us to successfully manage a future pregnancy.

Armed with the blessing of my MFM and knowledge of preeclampsia’s signs and symptoms, I became pregnant again.  Those first few months were terrifying and anxiety-ridden.  My MFM monitored my blood pressure, blood work, and urine protein levels constantly, as well as the development of my baby– first every other week, then every week, then twice a week.    Being informed empowered me, and I was reassured knowing that I recognized those symptoms that needed to be reported and acted upon.

We all held our breath as slowly but surely milestones were met.  First, 20 weeks, when I previously developed preeclampsia, then 24 weeks: viability.  Then 28 weeks.  Then 30 weeks and 32 weeks, then 34. . .

And, urprisingly, preeclampsia never developed!  I sit here now with a beautiful baby boy snuggled up on my lap.  Born full term and healthy, he is a true testament to the power of preeclampsia education and awareness.

It is possible to have a healthy mother and baby after a preeclampsia diagnosis, or even after a preeclamptic pregnancy!   The key is to not only receive regular prenatal care, but also be your own advocate.  Know the signs, know the symptoms, know your body, and trust yourself.

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35 Responses to “Preeclampsia and HELLP syndrome”

  1. Lisa Goel Says:

    Thank you for sharing your story. I think it’s amazing once you have a diagnosis like that, you become your own doctor and become armed with so much information.

    Here’s my story:
    My entire pregnancy was not normal. I had hyperemesis and had an IV pump to prevent me from vomiting so much until week 16.

    Then I had my first bleed at 9 weeks and was diagnosed with complete placenta previa. I had another big bleed at 19 weeks.

    I had another big bleed when I was 28 weeks, after a day and 1/2 of struggling with not feeling right and extremely high blood pressure.

    My OB met me at the hospital and admitted me immediately. My pressure had spiked to 180/120 several times, although the bleeding had slowed down. I was moved to a private room in Labor and Delivery and given many different blood pressure medicines every day. If it spiked, I would be a given a shot through the IV to bring it down quickly before I had a stroke.

    After trying everything in the book, I was moved to the ICU on a blood pressure medicine IV quick drip. I was attached to a bunch of monitors and my blood pressure was taken every 15 minutes. After 3 days in the ICU, I stabilized enough to be moved back to Labor and Delivery.

    The following days and nights in the hospital were long, scary, and lonely. When my blood pressure would spike, I knew right away because I would get a bad headache, nausea, chest and back pain. I always had to ring for a nurse when I started feeling like that. I also had two more big bleeds while in the hospital.

    I was put on strict bedrest and was not even allowed outside my room except for 1/2 in the wheelchair. I was so tired and weak from all the meds and fighting the uncontrollable high blood pressure.

    My OB didn’t know what to do with me. He even called former college buddies 11 at night to see if they had any advice. One said to check for an adrenal tumor that might be causing my severely high blood pressure. That came back negative. My bloodwork kept coming back worse and my urine starting having more protein in it which was a sign of not only pre eclampsia, HELLP. My platelets dropped, and my liver functions got worse and my OB Dr. Thompson and my specialist Dr. Patel and all the nurses agreed that it was time to get the baby out. I was 30 weeks and 2 days pregnant.

    Also, the night before I was given one last ultrasound and I was found to have vasa previa in addition to Pre E and HELLP. That meant that Kiran’s blood vessels were on the outside of the amniotic sac and she could have bled to death.

    I was put on magnesium sulfate twice which made me so sick with a migraine, and nausea, and just feeling plain miserable. The magnesium was given to prevent a stroke or seizure from my pressure being so high. As soon as the doctors decided it was time, I was put back on that again. So, in addition to being scared out of my mind of how the baby would be, and how the Cesarean section would go, I just felt so ill and so sick.

    Luckily everyone was on call that day and mom, Tara, and Parag were there. Even Navin and Dipti stopped by right before the surgery with a beautfiul bouquet of flowers.

    Kiran was monitored throughout and always looked good. Her weight was a bit low, but other than that she looked great. She was always moving, kicking, punching and her heart looked great. It was always so reassuring to feel her move so often even though I was so ill. I loved seeing her so often on the ultrasounds. Every other day she had an ultrasound to check her growth, practicing breathing, movements and other things.

    At one scan she was estimated to be about 3 pounds and that got me excited. I was hoping she would be at least 3 pounds if I had to have her soon. Unfortunately, the estimate was a bit off.

    Parag put on his scrub suit and hat and mom and Tara waited not so pateintly outside the OR. I was a nervous wreck and couldn’t wait for Kiran to be out and this to be all over with.

    Kiran Brahma was born at 9:37PM August 17, 2009, a day before her sister’s birthday, and weighed 2 pounds 7 ounces and was 14 1/2 inches long. She had long skinny toes and fingers and lots of dark, black hair on her head. She looked like a mini mini version of Alex. She was born 10 weeks early. She was due October 24, 2009.

    After 19 longs day in the hospital, I went home childless and sad and sore and knew that there were longer days ahead for Kiran.

    And it slowly began to sink in that I almost died. But, we are both alive and that is what matters and the healing that comes along with all of that.

  2. LaDell Says:

    I have both of these as well w my first daughter in 2001! I delivered 8 weeks early and was clueless to how much danger we were in until after I left the hospital n started doing research myself! I do remember having to make the decision on who to save if things went haywire in the or! As much as I wanted my baby I had to choose me to live! I’m so glad both of us made it. I don’t know what I would have done if she was not here to smile at me every day!! Thank for sharing your story! I really thought HELLP was rare but I’m selfishly glad to know I haven’t been alone is this.

  3. Sarah Byrd Says:

    I delievered my 3rd baby at 32 weeks. My liver and kidneys started to shut down after I developed HELLP what seemed like overnight. I had pre-e for weeks and went on hospital bedrest at 31 weeks. In the 5 days i was in the hospital I gained 45 pounds of fluid. They gave me the steroid shots and delivered my daughter at exactly 32 weeks. I hadn’t felt her move the entire day before, she was born with a tiny cry like a kitten and with no amniotic fluid. Today she is 2.5 yrs old. I lost a pregnancy at 12 wks in 1993 and her brother was still born 15 mos before she was born. I am terrified to try again and spend many days counting my blessings I have in her.

  4. Susan Cox Says:

    I too can relate to you. I never knew I was pregnant and was suffering with blood clots in my legs, had surgeries to correct the problem, but because I was told my my family doctor that I had been through menopaue(I was 47 at he time) no one tested me. Them one day I couldn’t see my toes, was rushed to ER and had a severe case of eclampsia and was critical. The baby was born 48 hours later at 25 weeks. She is beautiful and ever so healthy. It was learned that I have a genetic blood clotting disorder and that is what the underlying cause might have been. My sister had a similar pregnancy that was a result of fertility treatments and the disorder combined. Her son is doing fine and just graduated college last week . It is so important to be aware of the symtoms and signs as well as being checked for any blood disorders before you get pregnant or take any hormone treatments as they clash.

  5. Tracey McIver Says:

    Hello there! I, too, developed HELLP syndrome. The dr’s tell us that it is unusual because it was in my 5th pregnancy, and it was diagnosed at 20 wks. They first told us it wasn’t as bad as it looked, warning us that a 32 wk delivery was likely. We were okay with that, knowing that although our baby girl would be premature, she had a much better chance at 32 wks, than the 20 wks we were worried about. Two days after Christmas 2007, I was rushed to the closest hospital with a Level III NICU in Portland Maine. There, they tried to convince me to deliver immediately. I was just shy of 21 wks. My husband and I agreed to continue the pregnancy until I decided I could no longer tolerate it. There were some scary moments during the 2 1/2 weeks I kept them from taking our baby girl, and ultimately 3 days short of 24 weeks my daughter began to suffer from my condition. She had something called Absent End Diastole, and IUGR (Intrauterine Growth Restriction). They could no longer find her on ultrasound, because I had swelled up from the fluid retention so much. At 23 wks, 3 days, I finally submitted to the reality that I could no longer tolerate the pain I was in. Our precious daughter was born on January 8, 2008. At first we thought our prayers (that had been ceaselessly cried out to God for weeks) had been answered. Our baby had been born alive, and they were able to intubate her. Her first hours seemed to be going well, and needed minimal oxygen support. However, after the first 12 hours had gone by, her condition rapidly declined. 2 days after she was born, the baby we had hoped would prove everyone wrong, was called Home. She had begun to bleed internally from an unknown location and was not clotting her blood, she was suffering from kidney failure, and her blood glucose levels were absurdly high. We knew that my desire to give her a chance, my risking my own life was NOT so that she would suffer. We agreed to turn the machines off.
    My husband and I have also started our own non-profit organization to support bereaved parents in our area. We are working with The Compassionate Friends, to hopefully institute support groups in Seacoast New Hampshire. Our story is heartbreaking, and so is yours, but I would like to do everything we can to increase awareness of HELLP/Pre-eclampsia, to hopefully one day eradicate the serious risk of perinatal death as a result!

    Much love and Blessings,
    Tracey (and Ken) McIver

  6. Stacy Says:

    Beth,

    Thank you for your post. I too developed HELLP syndrome and preeclampsia. I was in my 34th week of my second pregnancy and I felt fine. other than severe swelling which I know now was a big indicator (I gained 28 pounds in one week). If my best friend did not force me to go see my OB 3 days before my scheduled appointment I would not have made it either. I was induced and delivered the day before my would be appointment. I think this is so important for moms to be to know about. We never discussed it at my doctors office and I never really knew why they checked your urine at each visit. Most moms learn about it when it’s too late, when they already have been diagnosed. Thank you for sharing your story. All the best to you and your family.

  7. Kayte Bielec Says:

    Thank you for writing this – I too developed HELLP very early – 26 weeks and delivered a beautiful baby girl who didn’t make it…we are getting ready to try the journey again…thanks for the HOPE!

  8. Amy Says:

    I too developed HELLP. I was just entering my 26th week when I felt what can only be described as uncomfortable. No pain. I felt as though I had pulled a muscle in my shoulder and no matter what position I was in I was uncomfortable. So after 2 days of this and just 3 days before my next OB appt. I went to the ER at 12:30 a.m. My husband and i were waiting for my blood test results when we were told my BP was 220/150. We were stunned and began to realize we were not going to leave the hospital in time for work in the morning..Then the nurse came in and told us the news..The baby, due in exactly 12 weeks would need to be delivered…now. We needless to say were stunned and could not believe it. No one we knew had ever gone through this. Since we knew nothing about premature babies I immediately thought she would die and kept that thought as I was wheeled into the OR and when she came out of me. She weighed 1 pound 8 ounces and looked to me like a baby bird. I briefly touched her tiny translucent hand before she was whisked away to another hospital with a NICU unit that could handle her size.
    Looong story short. Abigail Grace was born 3/10/10 and has been in the NICU ever since. She is going to be coming home in the next few weeks and is thriving after the twists and turns of being born so early.
    As I have gone through this is AMAZES me how many other woman have too gone through this. We hope to try for a 2nd baby in a year or 2 and are armed with the knowledge of what can go wrong.
    Thanks.
    Amy

  9. sasha Says:

    I had a very similar experience with pregnancy. I was told my high blood pressure could be a residual side effect of the anti-depressant Effexor that I had been on until find out I was pregnant. The first 22 weeks I spent sicker than a dog and at about 19 weeks 1 day I was in the ER bleeding. The bleeding stopped on its own and I was told I had a pliable cervix and that could be the cause. For about a month I felt pretty good. Then I started having headaches and my feet would swell so much it hurt to wear even flip flops. My boss told me I was exaggerating and I was just pregnant. Then I started having strange pains in my ribs that radiated all the way around to my back. Finally on March 8, 2009 the pain was so unbearable my now husband forced me to call my doctor who sent me to the hospital. The er sent me to the mother baby unit this time because I was almost 28 weeks. After hours of monitoring my doctor came in and gave me some pain medication and told me I was being admitted for further testing and observation. I was feeling better and did not understand why so much fuss was being made. I continues to be on bed rest at the hospital another 2 days when my doctor brought in a specialist who told me I had severe preeclampsia and would possibly need a C section before the end of the week. This was the first I had been told that something was actually wrong me. I was put on magnesium sulfate and given steroid shots for the baby’s lungs. After a day and a half of the magnesium the horrible pain in my ribs came back ten fold. At first a nurse told me I was just going through anxiety and to calm down bc I hurt so much it hurt to breathe. They gave me 2 shots which did nothing to ease the pain. At some point that morning I had an ultrasound showing the baby was a girl (finally) and that she was breech so if she was coming she would be born via c section after all. It also showed a gallbladder full of gallstones. Within hours I was in so much pain I was screaming at every breath every movement every touch. At 7 am I was rushed to OR for an emergency section. While in the OR being prepped someone told me it will feel better soon. My beautiful daughter sierra was born at 7:26am on March 12, 2009. Weighig 1 pound 12.8 ounces and 14.5 inches long at 27 weeks she was and still is the smallest gestational survivor at St Lukes hospital in Sioux City Ia. I woke up in ICU on the magnesium still, and several other blood pressure meds, and was told I had progressed to HELLP syndrome and had had problems clotting and needed several transfusions of platelets. 3 days later I was finally wheeled into sierra’s room to see my tiny dancer. I sat in my wheel chair and wept until steve gently told me I needed t go rest. I spent a total of 12 days in the hospital; sierra spent 80. I continue to have issues with high blood pressure from time to time even now over a year later. I went into the OR thinking that my gallbladder had been the cause of all my problems and woke up days later to learn the truth. I am terrefied to have another child, but want one some day. I am glad to know there is a foundation out there to help spread awareness of this little known terror. It gives me hope to know that women have gone on to have healthy full term babies with no complictions !

  10. Lindsay Says:

    Oh ladies, your stories are so heart wrenching. My thoughts and best wishes go out to all of you. Thank you for joining us in this important topic and for sharing your personal stories. Your messages, strength and compassion are inspiring.

  11. Julie Says:

    Thank you for sharing your story. I lived through not just preeclampsia, but full eclampsia. I was 32 weeks pregnant and I had developed a massive headache. I was also very swollen but everyone attributed that to summer heat because my BP was just slightly elevated and my protein level was normal. My husband was concerned about the headache and we showed up at my OB for an unscheduled appointment. The nurses checked my BP and protein and very calmly explained to me that the doctor was on rounds at the hospital and we wanted me to head over there just so he could ‘do a quick exam’ to make sure everything was OK. Thirty minutes later, I was admitted to the hospital on bedrest and the doctor said that I would have to deliver within the next 3-4 days because I was severely preeclamptic. Five minutes after that, I had a massive eclamptic seizure. Because I was on the labor and delivery floor and the doctor was right there, they stopped it and did an emergency C-section to immediately deliver my daughter. She spent a few weeks in the NICU, but she is perfectly healthy today. I thank God every day for the nurses that got me calmly to the hospital and my doctor for saving my life and my daughter’s life.

  12. Keila Choz Says:

    Thank your for sharing your story. I too developed pre-eclampsia at 28 weeks. I was hospitalized at close to 30 weeks on bed rest and because my blood pressures and my protein levels were so high, I had to be induced at 33 weeks. I delivered a beautiful boy who weighed 3 lbs and 15 ozs. He is now 15 days old and still in the NICU. He is doing well, as of last night he is 4 lbs and 5 ozs. I too was not well informed about this condition prior to everything that I went through, I am just so glad and count my blessings every day that both my baby and I are doing well.
    Again, thank you for this wonderful article..

  13. Becki Says:

    My sister was diagnosed with HELLP at 24 weeks. It was a weeklong process, and we almost lost her and Baby. It was mind boggling to us with all the symptoms, as this was the first time we have heard of it. Looking back, all the symptoms were there, just not what we expected. It was a matter of saving her life by delivering him early. They delivered C-section and my nephew lived a wonderful 32 days. Today, he has been an angel 19 months, and we miss him each day.
    Thanks to all who shared. Hopefully, one day this will be in the past. All babies will be born healthy and full term 🙂

  14. Crystal Says:

    It’s heart breaking to hear these HELLP syndrome stories but I’m glad people are getting the word out. I got HELLP syndrome very suddenly in my first pregnancy at 27 weeks, delivered a little girl that weighed just 12 ounces. She gave us 25 hours before God took her back. She is the reason our team walks and in 2 years we’ve raised over $19,000…couldn’t be more proud. I was then tested for blood clotting disorders but tested negative, however there was still suspicion that that might have been a contributing factor. 12 weeks later, before my first period, I miraculously got pregnant AGAIN! I was monitored VERY closely and the blood pressure started creeping up at 20 weeks. I was put on bedrest, then hospital bedrest, then delivered a 3 lb 6 oz little boy at 32 weeks. (2 kids in 9 mo and 10 days…crazy) He’s 7 mo today and perfectly healthy! I had pre-e in my 2nd pregnancy but it didn’t progress to HELLP. Now I am HIGHLY suspected of having an undiagnosed blood clotting disorder. It will be blood thinner shots for me if I am blessed with a 3rd pregnancy. Best wishes to all those ready to try again after surviving HELLP once…I hope your doctors keep a very close eye on you and I wish you happy healthy babies!

  15. Catharine Says:

    Thanks to everyone sharing their stories. I started out with a great first pregnancy, having no issues or problems expect for extreme tiredness. At the end of 26 weeks, I started to have flu like symptoms and just not feeling well. This went on for a couple of days. On the eve of 27 weeks, I started to have the right sided pain. I kept thinking that it was my gallbladder. In the middle of the night I finally went to the ER. I was put in a room and left for quite a while. The nurse kept trying to take my blood pressure and it was so high that she blamed the blood pressure machine, but yet she failed to take a manual pressure. About an hour or two later (I was told they were very busy with trauma patients) a physician came in with an ultrasound machine to look at my gallbladder. Upon seeing that my gallbladder was fine, the Dr. was perplexed with what was wrong with me. He mentioned that maybe I ate something and developed Hep A. He left again, and after another hour the nurse came in and wanted me to give a urine sample. My urine was cola colored!!! After that, I was moved VERY quickly to the OB floor and informed that I had HELLP syndrome. I ended up being put on Magnesium sulfate. They infused platelets, among other things. My son was delivered at 27 weeks and weighed 1 pound and 5 ounces. He is now a happy and healthy 5 year old. I feel extremely blessed and lucky that both of us survived without complications, although due to my extreme HELLP condition I am pretty sure that I will not be having anymore children.
    I did want to share that after I was discharged from the hospital, I met with the Director of the ER and he informed me how sorry everyone was who took care of me that night, but didn’t recognize the symptoms. Because of what happened to me they re-educated their staff so that hopefully another mother could be spared and sent directly to OB.

  16. Eleni Tsigas Says:

    Ladies, your stories are all so familiar to those of us at the Preeclampsia Foundation and our hearts go out to each of you. There is no magic potion, unfortunately, for all the various stories of tragedy, of hope, of devastation, and of beautiful outcomes. Know that we are working diligently with expert doctors and scientists around the world to combat this life-threatening disorder of pregnancy. No one serves as a better “cattle prod” than those of us who have been there!

    Best wishes for better outcomes now and in the future.

  17. Kacey Says:

    I cried when I read this and it was hard for me to get through. So much of it mirrored my pregnancies. High blood pressure developed with my first. After he was born I returned to my normal BP of 120/60.

    With my second, I had a horrible night of sickness, vomitting, and I called the Dr saying something is terirbly wrong. They told me it was stomache flu and to come in on Monday. When I did, I was informed I was informed I would have to delibver immediately. I went into HELLP, Kidney and liver failure. At one point the Dr looked at me and said this baby comes out now or you are looking at stroke coma and death. My second son was born the day after Valentines Day

    With My third child I was a nervous wreck and full of anxiety. I started having panic attacks. I was with high risk OBGYN’s and everything was progressing well. I went into pre term labor at 32 weeks and I was given meds and put on bed rest, but got through that. Then at 38 weeks i went in for my check up. I had gained 50 lbs in 1 week. I had protein in my urine and was immediately admitted for observation. By next morning I was descending into HELLP again and my daughter was delivered. After she was born I hemorrhaged and my hubby said no more.

    I am so grateful I got sick at the end of my pregnancies so my babies were ok. But I have heard things like I didn’t eat right, or were my kids born by different men (married 11 years to their Dad). I get very upset when people say with proper care this can be adverted. I tried everything. I am thin, a non smoker, I exercised in my pregnancies. I believe there is a genetic factor – my Mom became very ill with me.

  18. Samantha Olsz ak Says:

    Thank you for your story. Mine is posted on preeclampsia.org It always makes me feel ‘better’ knowing I wasnt alone…but terribly sad to think others had to go through similar or worse cases.

    http://preeclampsia.org/SeeStory.aspx?id=8191124

    I am a 2 time survivor or PE…and terrified to try again.

  19. Jenni Says:

    I delivered my little guy at 36 weeks after weeks of unrelenting pain, and the nurses telling me “Oh, pregnancy hurts, you’ll be okay.” I probably should have had him earlier but the doctors didn’t catch it until my husband insisted that he take me to the ER. He was born 10 hours later after I had to be on the drip to make me not seize. We googled HELLP syndrome the next morning after he had been taken from me emergency vertical incision c-section. I am so blessed to have lived through it and have my little guy! We are not going to have any more babies though because of this! We were clueless about the disorder, so I am glad that you are spreading the word. I think I need to become involved in spreading the word on this disorder to make sure more are informed and prepared to look for the signs!

  20. Cindi Hillman Says:

    We lost our Daughter Heidi Hillman-Mueller on Dec 6 2008 after delivering a healthy baby girl on November 7, 2008. She had all the symptoms of preeclampsia and HELLP but her OB missed it all and thought she had the flu. Her story is so long and involved that it just hurts to tell it.

  21. David Papandreas Says:

    My wife and I knew the signs after being told by our doctor that she had developed preeclampsia. Google preeclampsia and you can find hundreds of websites that will tell you definitions and characteristics. What we were looking for were ways of managing it. We also wanted to know what to expect going into it and perhaps some tips for getting through it. What we found were more definitions and books written for doctors and nurses that cost $100+.

    Long story short, my wife who was diagnosed with preeclampsia fairly early on, around week 26, gave birth to a beautiful baby boy, Owen, around week 36. The last 4 weeks she was on bed rest at our house. When things should have been their most stressful, we managed to not only stay positive, but remain grateful and laughing until the very end! We developed great systems for getting things done and had fun doing it.

    Now we want to share our experience with the world. We want to let all the moms and dads out there searching for practical information, like we were, know there is a guide to help them along the journey. The book is called A Mom and Dad’s Guide to Preeclampsia and offers tips and helpful suggestions, along with recipes and ideas for staying positive.

    We want to help all of the future preeclampsia ladies in the world by donating 10% of all profits from the book and calendar to fund preeclampsia research. Our goal is to help find ways of preventing this disease and possibly curing it without delivery of your baby. We wish all of the parents struggling with preeclampsia the best of luck and we love you all.

  22. Kim Says:

    This is such an amazing struggle and I feel for each of you. With all the advances of modern medicine it’s hard to hear stories about this type of risk and loss. I read another article about preeclampsia and a doctor in Colorado who is working on a tool to detect it in advance.
    http://www.medicalvoyce.com/preeclampsia-building-tool-identify-women-high-risk

    Hopefully, soon these stories will be a thing of the past.

  23. Chenai Gillispie Says:

    First of all I have to say that I’m touched by all of your stories! I never knew what HELLP or pre-e was before the day I had my baby. I was due on July 14th 2009 that day I wasn’t feeling particularly well, but figured that my little one was just so close that I may be in the early labor stages since I had had a couple contractions. On the 16th I was supposed to have a dr appt but went to the hospital at 7am. As far as I knew it was a normal pregnancy. I was told that my doctor wouldn’t be on the floor until much later at night so I had a mid-wife type nurse that I had never seen previously. I wasn’t progressing so they gave me vaginal meds to progress. I still wasn’t progressing. A few hours later a nurse came in and I thought she was being very rude but she knew what I didn’t. I was so weak and basically dying. From there everything happened so quickly! I listened very closely to try to get as much as I could from what the nurses were saying. All I caught was that my doctor was coming on the floor. I looked at the clock assuming it was time for my doctor to come on..it was much earlier and that scared me. I remember the nurses asking my husband if he wanted any last kisses when they rushed me to OR for an emergency c-section. I thought that they just meant because I was going into surgery but I later took this to mean they thought I might not make it. At 6:17 pm on July 16th my son was born. A healthy 7 1/2 lbs beautiful baby. While he was healthy I had a long battle ahead of me! I was in the hospital for what seemed like a month. I think I ended up being there for a full week. I had blood, blood platelets, and iron transfusions but finally pulled out of everything. I know that it was because God had plans for me and knew that not only did my little boy need me but my family did too. I never got the chance to thank the nurse that wasn’t even supposed to scrub in but stayed by me the whole time. Amy. I really think that the quick thinking on her part to insist that my doctor come in NOW; and the surgical skills of my doctor saved my life and the life of my unborn child.

    My baby is now a very very intelligent 2 1/2 yr old who is the joy of my life! My husband and I are thinking of trying to have another baby but I am leary due to my previous experience. I plan on consulting a physician before conception.

    I am so lucky and blessed to have my life as well as my little boy. Although I know I don’t thank God enough; he was with my doctors and saved my life for a reason.

  24. Lindsay Says:

    Chenai – Thank you for sharing your story with us. I’m glad to know that both you and your baby are doing well. It’s a very good idea to meet with your health care provider before you conceive again. Given your history, you might ask to see a maternal/fetal medicine specialist, one who specializes in high-risk pregnancies. All the best to you.

  25. allison Says:

    i just got out of the hospital 2 days ago with severe pre eclampsia. im 34 and when i found out i was pregnant, i was finally ready. i was even ready to do it on my own, as me and the father’s relationship began to deteriorate. then at about 5/6 months pregnant, my high school is in testing season and i notice that as i sit my hands and feet swell all week. i ask my doctor is this normal. i had no crazy weight gain the months before and he says “welcome to mother hood.” the weeks go on, the swelling increases, even my face and eyes swell, my nose looks bigger, my eyes even water every morning. i call the doctor again, is this normal? yes. i ask well when is it not then, cause it doesn’t feel normal, i can’t walk for periods of time, my feet hurt, etc. he said if i have vision changes or shortness in breath and other symptoms it is not normal. next time i go i gained so much water weight that he wants me to restrict my calories. i decide to do my own research and that is when i first hear of pre e really. instead i decide to restrict my salt drastically. i go on a brown rice diet of eating it every night with restricting my other salt intake to almost 500-1000 mg a day. finally i see a huge difference in my weight, i even lost 3 lbs when i return, my doc is happy. all the while he is checking my bp and urine, everything is normal.. then at 30 weeks the headaches get really bad. i thought they were a sinus infection, i always get them. i went on an low grade anti biotic, starts to go away and then comes back. then i notice i feel less and less fetal movements. now my doctor didn ‘t like that but we looked and everything looked normal at 30 weeks, she kicked for him on the U/S. i just figure days she didn’t kick meant that she was sleeping from stressful work environment. 32 weeks i have another growth scan u/s appointment, i go in for my appointment and suffer a massive headache attack. i go back for the appointment and the docs don’t like what they are seeing, they click the u/s machine and turn it so i don’t see, take my bp and i knew something was wrong….no heartbeat, they rush me to the er with me screaming and crying for my baby in the wheel chair. i thought they weren’t even going fast enough, they could save her, run the wheelchair. for two days they induced me, put me on magnesium and finally delivered her naturally but still born. my sweet lil soleil, my sweet lil baby girl, with the final anticipation to finally have her enter my life, was taken from me in a heartbeat. i got to hold her frail lil 2lb 3 oz body. there were some deformities on her face, her hands were barely there, she never would of made it, but her face was at peace and she looked beautiful. my first baby ever, died in my arms, and it feels as though im living some nightmare, this didn’t happen to me, she is still inside me, my body still looking pregnant as i sit here. i just burst into tears at random moments and feel something is missing, the empty car seat that sits there and ready to go because i only had 8 more weeks to go before she was born. how could this happen to me, how could this happen to such a precious a lil girl. i wish i would of known about this sooner, it is the silent killer as my doc said, because it is not that well known to everyone. knowledge is key and self research is the best medicine. i appreciate everyone’s stories, the only way to get this out there is write, read and speak about it.

  26. Lindsay Says:

    Allison – I’m so sorry to hear about little Soleil. Your pain must be intense and terribly hard to handle. My thoughts are with you.

    If you would like one of our bereavement kits for families who have suffered a loss, please send us an email requesting it to Askus@marchofdimes.com and we will gladly mail one to you.

    Thank you for sharing your story with us. Wishing you peace,
    Lindsay

  27. Emma Day Says:

    I had HELLP Syndrome which went undiagnosed for many weeks despite me calling my midwife every day because I felt unwell. I was finally diagnosed the day after I gave birth to my twins in May 2012.

    I have blogged my story in intense detail… It can be found here:
    http://crazywithtwins.wordpress.com/2012/08/15/hellp-syndrome-part-1/

  28. Eric Lucyk Says:

    My wife at about 18 weeks pregnant started swelling. We were thinking that it was just a part of normal pregnancy. The swelling kind of progressed as we went along and we were still just thinking it was normal. Then early in week 20 she started to have pains in her upper abdominal area and started having headaches. This started on tuesday night while she was staying at her sisters house. The pains were so bad she didn’t get any sleep. The day before this one of her co workers told her she looked yellow. Then the next day the pains went away. She still took the day off of work to rest. Later that night they came back but not as severe. She was able to get some sleep. She got up and went to work the next day feeling fine. Later that day about an hour before leaving work she started feeling these pains again. She came home and was feeling a little better so we ate dinner. After we ate she started not feeling well at all and the pains started to get severe again. So we decided to go to a near by hospital thats not the greatest but we thought they could give is an idea on what was going on. We were thinking possibly gull stones since this runs in her family. After doing all there tests and what not the doctor came to a conclusion that it seemed my wife had signs of early HELLP syndrome. So he wanted to send us on to the next hospital. So we got ready and off we went to the next hospital about 30 miles away. We got checked in late about midnight and within about an hour we went to see if there was a chance that it was fact gull stones with the ultra sound. The next morning her doctor came in and talked to us. After she looked at the blood work and all the tests she said there was a good chance of this thing called HELLP syndrome. We had no idea and had never heard about it. Then the doctor told us what is was and what we had to do. We were devastated and heartbroken. For you that have had this syndrome know that it can be fatal if your baby isn’t delivered asap. Normally this happens much later in the pregnancy and they are able to save the baby. Unfortunatley it was too early for our baby only at 21 weeks to have any chance at surviving. So my wife gave birth to our baby boy Carter. He was with us for 35 mins and we held him and charished him so much during that time. We will always be our first born and never be forgotten. I am glad that we have so many friends, family members and wonderful people in our lives to help us thru this extremely tough time for us…..Just wanted to share our story to try to help the education going

  29. Lindsay Says:

    Eric – Thank you for sharing your story with us. We’re so sorry about the outcome and wish you and your wife all the best. It’s very kind of you to share her symptoms and experiences to help others learn more. You are very right about the need to keep the education going. Take care – Lindsay

  30. Merry Says:

    I love finding people who share a similar story. My pregnancy was completely normal up until the beginning of my 3rd trimester in which my son was born at 32 weeks and barely weighed in at 2 lbs. I became concerned because it seemed like I just stopped growing and my child was not as active in the womb as he had been. Of course my doctor at the time said everything was find but I didnt relent. It was at my last appt-that I requested- that it was noted that my blood pressure was “slightly” elevated. It wasn’t until after I delivered that I developed clampsia and began vomitting bile as my liver was shutting down. Turns out I had developed a severe case of HELPP syndrome and have a genetic defect affecting my blood clotting capabilities. I will not be able to have anymore children but am so very thankful for the beautiful, smart and healthy 12 year old boy I have now. I still blame myself for what happened even though I am beginning to see that there was nothing I could have done as I was completely symptomless. My water had broken unbeknownst to me and I had my child 2 days later by emergency c-section. It was THE scariest time of my life! I’m so glad to see that there is so much more information out there than at the time for me. All women should be aware of this potentially life threatening issue. Both my child and I almost didn’t make it and I am sad I can’t have anymore children, but I wouldn’t change a thing.

  31. Monica Says:

    I was diagnose with HELLP syndrome at 23 weeks 5 days. At exactly 24 weeks i went into kidney and liver failure and my platelets dropped into the 20,000s. They told me that my baby wasn’t growing and measuring only 22 weeks. They told me and my husband that they where going to have to take the baby. We where devastated! I was 21 yrs old, in the Marine Corps and had no idea things like HELLP existed. So I sucked it up and said please please do whatever you can to save my baby!! So at 24 weeks 0 days I delivered a 370 gram (13oz) baby boy with a 5% chance of him making it out of the delivery room. I had a emergency classical c-section. After they got my baby Jayce out they immediately took him away before I could see him and put the breathing tube in. After he was taken away I had surgical complications and had to be sedated. When I came back to reality i was still in the operating room, my husband had left to go with our son and no one could tell me if he was alive. I finally make it to the recovery room when a social worker comes in to speak with me. She says that my son is alive but having many complications. They then gave him a 10-15% chance to live through the night. OK so long story short, after i delivered all my symptoms went away and I was fine. And by the grace of God my son is now a 6 month old 9lb health baby boy! He spent 127day (4 months) in the NICU in san diego. He has some developmental issues like he’ll crawl later and walk later than most kids his age, but other than that I have a very healthy little boy. Have faith people!! My 13oz baby lived and is living a normal healthy life!! I really want to have another kid. Im so scared and nervous. I have read so many stories, seen so many statistics. Im just not sure i can go through that again. Wish I had the answers!

  32. Charmayne Says:

    My first pregnancy was wonderful…right up until six days before the end of it. I had the normal issues, but nothing abnormal. No high blood pressure, no preeclampsia, no morning sickness even! Then the pain started. It felt like I had been in some sort of fight and my stomach area had been pummeled intensely. I went to the doctor on the first day that the pain started and everything appeared to be normal. They did a check to make sure that I wasn’t having any preterm labor issues as well as a blood pressure and urine check. Everything came back normal and I was sent home with the possibility that I was having a bit of a gas issue. The pain actually went away the next day, leaving me feeling somehow stretched and sore, but was back the following day, and worse than ever. That was Sunday, so I had to wait until Monday to call my doctor’s office. When I called, the nurse went along with what the doctor believed was the original problem, gassiness, and suggested laxatives. I tried her suggestion, and the next day wasn’t so bad, but, by Wednesday night, I was miserable once again. On Thursday I called the doctor again and was told that there was no one that could see me, but that I should go to my chosen hospital and that they would let the hospital know that I was coming. By the time that I got to the hospital, my urine was the color of ice tea and I was in a great deal of pain. They gave me a shot and told me that there was blood in my urine, but they still seemed to have no clue about what was going on. My doctor was actually on vacation, and the doctor that came when the hospital called was a man that I had only seen in passing during my office visits.

    Originally, they couldn’t find out what was wrong. They did tests and an ultrasound, gave me a shot for pain and told me that they were going to keep me overnight for observation. The doctor came in and said that they were going to continue running tests, but that he had to go home (it was well into the evening by this time and he had already had one delivery that day). I actually told my fiancé to go home and get some rest because he had to work the next day! Luckily, he didn’t listen. The doctor came back roughly an hour later and told us that I had HELLP syndrome and that my daughter had to be delivered as quickly as was possible. When my fiancé asked how long he had before the delivery, they told him that he only had as long as it would take the hospital to get the platelets that I would need to receive during my delivery, so roughly ½ hour. We were also told that I would have to have a cesarean, that I couldn’t stay awake for the delivery because they couldn’t give me an epidural, and that my fiancé would not be allowed into the delivery room at all. I was absolutely terrified…and everything happened so quickly.

    My daughter was delivered at 32 weeks and was 3 lbs 2 oz. I didn’t get to see her for 3 days because they took her before I woke up, and I was unable to leave my bed after her birth. She is now almost 3 years old and is still a little tiny thing, but is doing wonderfully. She ended up staying 4 weeks in the NICU before she could come home, had to have an apnea monitor for 6 months after her birth, and had some other issues, but she has outgrown it all, and has done tremendously well.

    Once I delivered, the doctor explained to me that they finally were able to diagnose the issue due to my platelet count (25,000) as I had absolutely no symptoms of HELLP or preeclampsia. He told me that the pain that I was feeling was caused by my liver dying. Above all, he told me that I was very lucky that I had come to the hospital when I did. He reminded me that I know my body better than anyone else in this world and that paying attention to it had made a world of difference (this advice led me to an emergency gall bladder surgery last year also, but that’s another story).

    Now, I’m pregnant again…26 weeks and so very scared. This time, the doctors are watching me very closely, and at least they know what to watch for this time. I have gestational hypertension and anemia, which makes me incredibly nervous, but we are still hoping that the HELLP syndrome stays away. Hearing that you had no issues with HELLP syndrome during the pregnancy of your son helps me to feel somewhat more hopeful that I will come through this time without the disease coming up. I am also doing my best to quell my anxiety and make sure that I pay attention to my own body so that I notice any symptoms or other issues that might occur.

  33. Lisa Polverelli Colvin Says:

    I would like to share my sister’s story. I wish every day that she could have been one of the survivors of HELLP Syndrome:

    On Tuesday, Feb. 26, 2013, at 4:30 p.m., Christie Polverelli came home from work to her loving family: her 7-year-old daughter Alexis; her partner, Chris; and their two sons, 3-year-old Carter and 2-year-old Lukas. Christie was 27 weeks pregnant with their baby girl.

    It was very noticeable that Christie’s fingers, ankles, legs and face were bloated. In spite of this, she played with her three children, chasing them around and laughing. Christie spent special time with her children every day; her children were her life.

    At 5 p.m., Christie experienced severe pain on her right side and was taken to the hospital by ambulance.

    When Christie arrived at the hospital she was first taken to the emergency room. Through blood tests, vital signs and physical signs, it was clear that Christie and her baby were in critical condition. The attending OBGYN knew that the baby had to be immediately taken.

    Christie was rushed to the operating room for an emergency cesarean section and her baby, Elle (ell-ee), was born a short time later. At a mere 1 pound, 12 ounces, Elle was rushed by helicopter to a specialty medical center.

    When the doctor removed baby Elle, he found a circumstance he had not dealt with in 25 years. Christie’s belly was full of dark red blood and there was no sign of where the blood was coming from.

    The hospital’s best surgeons were called in with emergency status and they had to cut Christie open all the way to the chest bone in order to figure out where the blood was coming from. They found out that Christie’s liver had ruptured and the doctors were now faced with stopping the bleeding.

    Christie had HELLP syndrome.

    Christie was bleeding internally and her blood would not clot. With the assistance of a liver specialist and constant blood transfusions, the doctors were able to slow the bleeding down by packing the liver with gauze. Christie was in critical condition and was placed into ICU. Christie was very ill. We were in total shock.

    At about 2:30 a.m., we were able to see Christie. She was twice her normal size and hooked up to multiple machines; it seemed as if tubes were everywhere. She was still receiving blood transfusions; she was oozing blood from her eyes, mouth, nose and ears. Christie woke briefly, rubbed our fingers and then tried to call out to her oldest child Alexis.

    At 7:30 a.m., we were told that Christie needed to be transferred to another, specialty medical center – the same one that Elle was taken to. The weather did not cooperate, so Christie could not be flown by helicopter (a 20-minute ride); she had to be taken by ambulance, an hour drive away. We were told that Christie may not survive the ride.

    Christie arrived at the medical center shortly after 10 a.m. and was taken immediately into exploratory surgery. She was still bleeding and they re-packed her liver. Christie was then transferred to ICU.

    A short time later, the doctors showed up and told us that Christie was now bleeding from the stomach as well, and they needed to go in and try to stop the bleeding. They needed permission to do this. We no more than said “YES. PLEASE SAVE OUR BABY” when another doctor showed up to tell us that her lung had collapsed.

    We asked to see Christie before she was taken to surgery. On the way to see her, we were rushed in because she was now in full cardiac arrest. A team of nurses were working feverishly; a young man was on top of Christie, performing CPR. We were screaming and crying, yelling for Christie to not go. They got a heartbeat. She came back.

    As they took Christie to the operating room, we cried and said encouraging things to her. We could not believe this was happening!

    A short time later, the doctor came and told us that Christie went into a brief cardiac arrest on her way to the operating room; she was revived, but she was now back into full cardiac arrest. Christie’s eyes had rolled up into her head and he would have to let her go if the CPR was not successful. Christie passed away on February 27, 2013, at 2:14 p.m., from HELLP syndrome and cardiac arrest.

    At approximately 4:30 p.m., we were able to go in and view our lovely Christie at rest. This is the only way to explain how we felt: crushed, horrified, shocked, and in disbelief. These feelings remain to this day.

    A fantastic person who gave everything for her family had passed away. Four precious children lost their beautiful and loving mommy. Her partner, Chris, lost his loved one. Her friends lost a special person that took the time to care and to listen. We lost a wonderful daughter, sister, mother and friend. Those who did not know her were sorrowed by her story.

    Christie’s children spend as much time as possible together. Elle is a miracle baby and is doing well.

    It was extremely painful to write this memory. Our families hope that we can help to spread awareness and to save the lives of mothers and babies. We are also comforted to know that Christie’s spirit lives on.

  34. Lindsay Says:

    Lisa, I’m sure it was very difficult for you to go through these events again. Thank you for showing us how terrifyingly destructive HELLP syndrome can be. We’re so saddened by your family’s loss and truly appreciate you taking the time to spread awareness. Sincere best wishes, Lindsay

  35. SiBe Says:

    Were you taking anything the second time around…before bed rest and after bed rest…I lost a child to preeclampsia and six months later got pregnant again which is now and they have me on baby aspirin currently 18 weeks

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