Kristin Hinton, in the hospital laboring with her first child, when her doctor overheard Hinton mention a pain in her shoulder and neck, and asked about it. Hinton told the doctor about that pain, as well as pain she had in her right ribs over the last week. Hinton told Romper, “[the doctor] said she was going to order some tests. She returned a little while later and told me I had HELLP Syndrome.” Hinton, many pregnant women, had never heard of HELLP syndrome. She was totally shocked that she went from what she thought was a simple pulled muscle to a medical emergency unfolding around her.
HELLP syndrome is one of the most severe forms of preeclampsia and occurs in 5 to 12 percent of preeclamptic patients.
HELLP syndrome is named for its primary symptoms: Hemolysis (H), or the breakdown of red blood cells, elevated liver enzymes (EL), and low platelet count (LP) occurring in pregnancy. It is believed to be a severe form of preeclampsia, which is a disorder that causes high blood pressure and protein in the urine in pregnancy. However, according to the National Institute of Health, HELLP syndrome can occur without either high blood pressure or protein in the urine.
While HELLP syndrome is rare, effecting only 1 or 2 out of every 1000 births, without early treatment HELLP syndrome carries with it a high risk of severe health complications, including death, for the mother and fetus. Unfortunately, many doctors miss the early signs of HELLP syndrome, because they can be mild, non-specific, or dismissed as symptoms typically associated with healthy pregnancy.
“HELLP syndrome is one of the most severe forms of preeclampsia and occurs in 5 to 12 percent of preeclamptic patients. It can lead to substantial injury to the mother’s liver, a breakdown of her red blood cells, and lowered platelet count,” Eleni Tsigas, Chief Executive Officer of the Preeclampsia Foundation, explains to Romper. “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, gallbladder disease, or other conditions. A simple blood test can check liver enzymes and other indicators of HELLP syndrome.”
Thinking she was in labor, she headed to the hospital. However, when she reached the ER, she was told that her son had died.
In Kristin Hinton case, she had a doctor who recognized an early subtle symptom of HELLP — pain on the right side caused by enlargement in the liver — and tested for these indicators. This quick-thinking led to the safe delivery of Hinton’s son via c-section. However, while her son was safe, the threat to Hinton’s health from HELLP syndrome was not yet over. Hinton says the morning after the birth of her son, her pain worsened, her liver numbers were 10 times what is considered normal, and her platelets were dangerously low. She was bleeding internally from her liver, requiring multiple blood and platelet transfusions and several days of intensive care.
According to the March of Dimes the symptoms of HELLP syndrome include:
- Blurry vision
- Fatigue (feeling really tired)
- Quick weight gain and swelling
- Nausea or throwing up
- Nosebleed or other bleeding that doesn’t stop easily
- Upper belly pain
Once HELLP syndrome is identified, Tsigas explains, “Most often, the definitive treatment for a woman with HELLP syndrome is the delivery of her baby. During pregnancy, many women suffering from HELLP syndrome require a transfusion of some form of blood product (red cells, platelets, plasma). Corticosteroids can be used to help the baby's lungs mature if delivery is needed before 34 weeks. Some healthcare providers may also use certain steroids to improve the mother's outcome.”
However, HELLP syndrome must be identified before medical intervention can help. The was not the case for Tammy Hahs. Pregnant for the first time, Hahs experienced a unremarkable pregnancy until the latter part of her second trimester, at which point she began having severe swelling in her legs. She told Romper, “I felt a non-stop sense that something wasn’t right.” She brought her concerns to her doctor multiple times over the period of a month, but was told that “it was all normal pregnancy symptoms.”
At 39 weeks pregnant, Hahs began having severe pain in her upper abdomen. Thinking she was in labor, she headed to the hospital. However, when she reached the ER, she was told that her son had died. Hahs did not have time to process the news of her son’s death. Her blood pressure and heart rate were dangerously high, and her liver was shutting down. Like Hinton, she required multiple blood transfusions and intensive care.
I fought and won against something that should have easily killed me! I feel like Superwoman.
Sadly, the difficulty in identifying HELLP syndrome contributes to the associated mortality rate. Studies show maternal death in the case of HELLP syndrome occurring at approximately 1 percent of cases — although rates as high at 25 percent have been reported. According to the Preeclampsia Foundation perinatal mortality ranges from 7.7 to 60 percent of cases. In developed countries stillbirth — or death of a fetus after 20 weeks of gestation — occurs in HELLP syndrome in 51 out of every 1000 pregnancies, a rate that, according to the Preeclampsia Foundation, is higher than in severe preeclampsia and eclampsia (when preeclampsia progresses to cause seizures).
Risks for the reoccurrence of HELLP syndrome in subsequent pregnancies range from 2 to 19 percent, according to the Preeclampsia foundation. Women who experience HELLP syndrome also have a higher risk of all forms of preeclampsia, ranging from 16 to 52 percent in subsequent pregnancies. Both Hinton and Hahs have had other children since their HELLP pregnancies. Hahs has had two more children, and experienced HELLP syndrome in both pregnancies. However, she said, the symptoms were kept at bay with proper medical monitoring by her doctor.
Hinton’s second pregnancy did not lead to HELLP syndrome. However, Hinton still struggles with medical complications, including vision loss and chronic pain. She also struggled with PTSD from her experience. However, she told Romper, that through volunteering to help other HELLP survivors, she empowered herself. She says, “My life has purpose like it never had before — I fought and won against something that should have easily killed me! I feel like Superwoman.”
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