Real Complications, Real Voices: HELLP Syndrome

In this new series, Giving Birth with Confidence will address well known and lesser known pregnancy and birth complications by sharing practical information and voices from real women who have experienced them. While most birth complications happen infrequently, they do happen. If you or someone you know is pregnant, it’s important to be aware of the signs and symptoms of complications. We encourage you to join in the conversation in the comments section. The following information is not meant to replace diagnosis or information from your care provider.

HELLP Syndrome 

HELLP syndrome is defined by the Preeclampsia Foundation as: ”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) and
LP (low platelet count).”

It is estimated that 0.2 to 0.6 percent of all pregnancies will be affected by HELLP syndrome.

Warning Signs of HELLP Syndrome

  • High blood pressure
  • Protein in urine (proteinuria)

Symptoms of HELLP Syndrome

Most common:

  • Headaches
  • Nausea and vomiting that continue to worsen and that may occur after eating
  • Upper right abdominal pain or tenderness
  • Fatigue or general feeling of being unwell
The following symptoms vary and may also appear in conjunction with the above more common symptoms:
  • Visual disturbances
  • High blood pressure
  • Protein in urine
  • Edema (swelling)
  • Shoulder pain or pain when breathing deeply
  • Severe headaches
  • Bleeding

Diagnosis of HELLP Syndrome

Diagnosis of HELLP syndrome can be difficult as its symptoms can mimic other common pregnancy ailments or flu-like illness. Early diagnosis, however, is critical to the health of mother and baby. If one or more of the above symptoms are happening during your third trimester, tell your doctor or midwife immediately. She will most likely run a series of blood tests, including liver function. Your care provider will look at your red blood cells, at your liver enzyme levels, and at your platelet count to make an accurate diagnosis.

Treatment of HELLP Syndrome

The best way to treat HELLP is to give birth to your baby. If you have not yet hit 34 weeks of pregnancy, your doctor will try to elevate  your baby’s lung function with the injection of corticosteroids to give him a better chance of survival as a preterm baby.

Risks of HELLP Syndrome

The following are possible complications in mothers and babies if HELLP is left undiagnosed and untreated (from the American Pregnancy Association):

  • Placental Abruption
  • Pulmonary edema ( fluid buildup in the lungs)
  • Diseminated intravascular coagulation (DIC—blood clotting problems that result in hemorrhage)
  • Adult respiratory distress syndrome (lung failure)
  • Ruptured liver hematoma
  • Acute renal failure
  • Intrauterine growth restriction (IUGR)
  • Infant respiratory distress syndrome (lung failure)
  • Blood transfusion

Cause of HELLP Syndrome

Currently, there is no defined cause of HELLP. It is more common in women who have preeclampsia or pregnancy induced hypertension, but it also occurs when neither of these complications are present.

Prevention of HELLP Syndrome

Because the cause of HELLP is unknown there is also no known prevention. Early diagnosis and management is critical.

Real Voices of Mothers who Experienced HELLP 

In her fifth pregnancy, Karen was diagnosed with HELLP and sent for an emergency cesarean after a string of complications. She had a prior history of preeclampsia with her second pregnancy.

I was told I had magnesium toxicity and was beginning to develop HELLP syndrome.  On Monday morning my urine came back with a protein of over 800 and I was scheduled for a c-section later that afternoon.  Here we were again in the same OR having an emergency c-section.  I delivered a six pound boy.  He was admitted to the NICU with a Cpap, which was removed later that day. Josh had a 19- day NICU stay mostly due to lethargy and feeding issues.  They called him a “mag” baby as they felt his issues were related to the magnesium I was given.  He is now nearly 5 months and doing wonderfully.  I again find myself in a love hate relationship with my Medela, and am exclusively pumping breast milk for him. He has absolutely no issues at this time. I feel that this was my most difficult recovery, and every day I feel a little better, making me realize how sick I really was. I still have issues with blood pressure, visual disturbance, headaches, and bruise fairly easily. I have been told that these are still probably all related to the preeclampsia and can take months to completely resolve. I have been told no more babies for us.

It is difficult to share with others who have not experienced difficult births and NICU stays. To those on the outside, “all’s well that ends well” should apply, and it is difficult to express the emotional difficulty of these experiences when I should just be grateful for my beautiful babies. Believe me, no one appreciates and loves these miracles more than I do.

Stephanie, a mother of two, experienced serious complications and premature delivery by cesarean of her first baby while she was under general anesthesia, all due to a late diagnosis of eclampsia and HELLP syndrome. Her son was born at 33 weeks weighing 3 lbs. 7 oz. and spent 21 days in the NICU. He is now a happy, vibrant 7 year old.

It is hard to describe what an experience like this can do to a mother.  For one, I was very determined to breastfeed but given the trauma my body experienced and a delay of two days in getting my son to breast, I failed to produce any real quantity of breast milk.  I will never forget my husband sitting on the end of my hospital bed, encouraging me to pump, even helping me because I was so weak, all because he understood just how important it was to me.  At 21 days old, my son came home.  I was so happy and grateful yet those feelings were overshadowed by the feeling that I had failed him.  My body gave out on him in pregnancy.  He was born early and had to fight extra hard because of me.  I was unable to provide him with what I believe is the best nutrition because my body had failed.  It was very easy to blame myself, to hate myself.  At one time I even thought it might have been better for him if I had died from all the complications. Surely another mother would be better for him than me since it was my body’s fault he came early.  Those thoughts drove me back to the doctor where, with some medication and some therapy, I was able to overcome those feelings.   Even now that Lucas is a healthy, happy, vibrant, 7 year old, I blame myself for his struggles.  Like so many preemies similar to him, he has had some challenges, fine motor delays, and some social and emotional issues that we continue to work through every day.  He has to work harder than other kids because of my body’s failure and that scar is always with me.

Leah only found out after she gave birth to her baby that it was HELLP that caused her swelling, high blood pressure, vomiting, excruciating rib/chest pain, and seizures. At 40 weeks 2 days, she gave birth vaginally (escaping cesarean only due to the risk of  bleeding) to a healthy baby boy.

It wasn’t until after I was home and started to research HELLP Syndrome that I began to understand what had REALLY happened to me. There was really no explanation in the hospital. I even asked my husband afterwards if they took him aside and explained anything to him to make him aware of the severity of the situation and he said no. He was just as in the dark as I was. It was a very scary time for both of us.

Once I realized how close I came to dying I was overwhelmed with emotions – sad, angry, shocked and devastated. I do not relate being “sick” to “dying”. Sick to me is having a cold not dying, yet this is the choice of wording the doctors and nurses used the entire time I was there. Maybe it’s to not send patients in that kind of a state into more shock but I really had no idea that I was dying or there was even a possibility of that.

After some counseling and working through all of my emotions, today I can say that I am just grateful that my son and I are healthy and alive! Today I have a totally new perspective on life and pregnancy/birth. I have made it part of my life mission to help educate women especially first time moms on the signs/symptoms of pre-eclampsia and hellp syndrome.

At 34 and-a-half weeks, Melissa was diagnosed with HELLP and told that her daughter had died. After an attempted vaginal birth, her liver ruptured and she was eventually rushed into an emergency, life-saving surgery. After 3 days in a coma and 6 days in intensive care, Melissa was finally released to go home after a 10-day hospital stay.

Emotionally the recovery from HELLP was impossible. I hated my body. I felt betrayed by it. My daughter died because of my body.    It was the unnatural order of things, she died and I had lived because of my disease. I was a shadow of my former self, incapacitated by grief and left in the ruins of every hope and dream I had ever had. I despised the fact that my daughter was synonymous with a horrific disease, I raged and crumbled under the crushing burden of loss. I did not trust my body to continue working, knowing how quickly life can change. I was left raw, emotionally burned consumed with feeling of powerlessness and completely jaded.

It would take time, counselling, PTSD treatment and grief to allow me to compartmentalize what happened to us. It would be a year before I could look at my scars without hatred. Now it has been 2 years and 4 months since HELLP slammed into us, took my daughter and almost killed me and I can honestly say I will never accept it. I will not accept HELLP as a label in my life. I will not accept this horrid disease. I have incorporated it into our life’s story. I have allowed myself to have faith enough to try again.  Our second daughter was born 1 year and 8 months after our first pregnancy’s end. A perfect, healthy baby girl who looks so much like her big sister, was born after a 38 week perfect, healthy pregnancy.  Though we forever walk with a hole in life somehow, unimaginably she has has returned the joy to our lives. We feel alive once more and for her we are the most grateful.

 

 

Avatar of Cara TerreriAbout Cara Terreri
Cara began working with Lamaze in 2004, two years before becoming a mother. Three kids later, she's a full-fledged healthy birth advocate and the Site Administrator for Giving Birth with Confidence. Most recently Cara began study to become a Lamaze Certified Childbirth Educator and DONA certified doula (learn more about her services at www.SimpleSupportBirth.com). She continues to stand in awe of the power and beauty in pregnancy and birth, and enjoys helping women discover their own power and joy in the journey to motherhood.

Comments

  1. Buffy says:

    Cara this is a wonderful piece.
    Informative – I certainly learned a lot about HELLP and will share it with the women I know.
    Touching – I am still drying the tears from the personal shares.

    From my heart to yours, thank you.

  2. Thank you Cara, for putting this series together! Good information for women to use! I look forward to reading more in the series! Great job!

  3. Jennifer Carney says:

    Thanks for this – and especially to the mothers who shared their stories, As a HELLP survivor, I can say that part of the emotional impact for me was from developing a disease of which had no previous awareness – the signs and symptoms were there, but I missed them because I didn’t know them. I am glad to see Lamaze taking on the subject of complications – and I am also glad to see it done this well.

  4. Bethany says:

    Thank you so much for sharing this article! I found my personal experience with HELLP syndrome even scarier because my OB team didn’t know much about it. They debated symptoms and treatment in front of me – which certainly doesn’t boost a mama’s confidence! As I learn more and more about it, I realize the severity of it and how blessed me and my beautiful 32 week baby were. He just finished kindergarten!

  5. Avatar of Cara Terreri Cara Terreri says:

    Thanks, everyone, for your kind words and for chiming in on the post. Thanks, too, to Bethany and Jennifer for sharing the details of your own experiences with HELLP. It’s so important for women to hear your voices.

  6. Laura says:

    I was diagnosed with HELLP syndrome when I was 26 weeks pregnant. My blood pressure was very high and I needed a platelets transfusion. My condition was too far gone to attempt to wait and give me the needed steroids for my daughter. She was born the same night- weighing 1lb 5oz. She spent 163 days in the hospital between the NICU, PICU, and 4 surgeries. She is now a bright, happy 2 1/2 year old. Up until that day, I had only read a tiny blurp about HELLP in my pregnancy book, so thank you for spreading awareness.

  7. Becci Griffiths says:

    I gave birth on the 9th april 2013 a baby boy born at 28 weeks weighing 2lbs 11. I had hellp sydrome amd my life was at risk. I had gome to a routine midwife appointment and she recognised something was up even though at the time I felt fine within a few days I had pains in my below my chest and was vomitiing. I had never heard of hellp sydrome before and im trying to raise awareness through a facebook page. Xx

  8. Teyonna says:

    I like Melissa have lost my daughter do this horrible disease. I was 24 weeks pregnant and had been told I was suffering from chronic hypertension. I spent 2 weeks in the hospital when I was 16 weeks and then put on bedrest for another 3 weeks just so the doctor’s could monitor my blood pressure. I was taking 1200 mg of labatalol and 30mg of procardia daily. I had no energy, I had terrible headaches, and I would be short of breath all the time. I went in for my 24 week ultrasound and was told the blood flow to my placenta had begin to reverse so I was rushed to a level 3 trauma center. I was admitted and being monitored for my pressures as well as receiving celestone to mature the babys lungs. I ended up delivering the next night via emergency c section and found out my baby girl was only 10oz and could not be saved. Her little mouth was too small for the tubes to go in. She struggled 1 hour to survive but then gave up. This was the worst possible pregnancy ever. At this point I am afraid to try again. If I do it will be years from now. I gave birth 2/20/14 it has been 3 weeks and I miss her dearly.

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