What is HELLP syndrome? The dangerous pregnancy condition women should know

It's considered to be a variant of preeclampsia — and it can be life-threatening.
Nicole Tagalk, preeclampsia, HELLP syndrome
Nicole Tagalk with her husband, Sontice, and daughter, Eleanor. She lost her son, SJ, at 29 weeks due to a pregnancy complication called HELLP syndrome, and is now fighting to raise awareness of the condition.Courtesy of Nicole Tagalk

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By Rheana Murray and Marguerite Ward

Nicole Tagalk had never heard of HELLP syndrome until after she lost her son.

She was only 29 weeks pregnant.

"The OB did the scan and confirmed she couldn't find a heartbeat ... so our baby had passed away," Tagalk told TODAY Health. "At that point, we didn't really know what was going on."

For nearly two weeks, Tagalk, of Raleigh, North Carolina who was 28 at the time, had been feeling unwell. She had a cold that wouldn't go away and a searing headache. Her feet were so swollen they only fit in Uggs. Yet her doctor brushed off her concerns as typical pregnancy symptoms, and told her to take Tylenol, she said.

But when the pain became too much, her husband took her to the emergency room. That's where Tagalk delivered a stillborn son, whom she and her husband, Sontice, named SJ.

That day in 2015 they learned Tagalk had preeclampsia, a dangerous pregnancy complication characterized by high blood pressure. Specifically, she had HELLP syndrome, which is considered to be a variant of preeclampsia (but can also exist on its own, without high blood pressure) and can be difficult to diagnose.

What is HELLP syndrome?

HELLP syndrome is a life-threatening pregnancy condition that usually occurs in a woman's third trimester, but can also happen after childbirth.

The "H" in the acronym stands for hemolysis, which is the breaking down of red blood cells, the "EL" stands for elevated liver enzymes and the "LP" stands for low platelet count, according to the Preeclampsia Foundation.

The condition can be fatal, so it's important for women to be aware of the signs and symptoms.

What are HELLP syndrome symptoms?

For Lauren Dill, 31, of Sturgis, Michigan, the first sign that something was wrong was when she started experiencing severe chest pain, around 30 weeks pregnant. Doctors told her to take Tylenol, she said.

But experts say that's a symptom of HELLP syndrome, and should be a red flag in the third trimester.

Dill was eventually hospitalized and diagnosed with HELLP, and her daughter was born two days later, weighing only 2 pounds, 12 ounces. "We were both lucky to be alive," she told TODAY earlier this year, as part of a project about the bias against women in health care.

Tagalk and her family are now involved in The Promise Walk for Preeclampsia, which raises funds for and increases awareness of preeclampsia. Courtesy of Nicole Tagalk

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For Tagalk, now 32, a flu-like cold and a headache were her first symptoms. Severe headaches are also a symptom of the condition, along with nausea and vomiting, which can sometimes feel like a bad case of the flu, according to the American Pregnancy Association.

These are the main symptoms to look out for:

  • Severe headaches
  • Upper quadrant epigastric pain (discomfort right below your ribs, might feel like heartburn)
  • Nausea and vomiting

Unfortunately, these symptoms aren't unique to HELLP and they overlap with symptoms of other pregnancy conditions.

"It's hard for patients — and sometimes the doctor — to discern what is normal and what is abnormal," said Dr. James N. Martin, professor of obstetrics, gynecology and maternal fetal medicine at the University of Mississippi Medical Center in Jackson. "It's just a matter of degree. But bad epigastric pain is not common in normal pregnancy. Bad nausea and vomiting is not common in normal pregnancy. Morning sickness is usually a feature of earlier gestation. When patients start having severe nausea and vomiting in the last third of pregnancy, that usually mandates checking some things out, among which is HELLP syndrome."

If a patient presents those symptoms, doctors should take her blood pressure and order a urine test, as high blood pressure and protein in the urine are major signs of HELLP — but not requirements for diagnosis.

"The road to diagnosing HELLP usually starts with a patient's blood pressure being elevated," Martin said. "Hypertension is very commonly presented in women who are developing HELLP syndrome. It is not always present, though, and in maybe 10%-15% of patients, it's not there."

"And then urine protein, which is commonly checked prenatally, is usually there," he added. "But it may not be there until later in the course of the disease."

To recap, these are the signs to be on the lookout for:

  • High blood pressure
  • Protein in the urine

HELLP syndrome postpartum

HELLP syndrome, along with preeclampsia and eclampsia, most commonly occurs in a woman's third trimester, but it can also occur after she gives birth.

"That's one of the great challenges we have, that preeclampsia, eclampsia and HELLP syndrome can all occur after delivery," Martin said. "But it's much less common."

"That's the basis for the recommendation that any patient with hypertension in pregnancy be seen seven to 10 days after delivery, to check her blood pressure and make sure everything's OK," he added.

HELLP can also occur before the third trimester — Martin has seen cases as early as 16 weeks — but that is rare.

HELLP syndrome treatment

When a woman is diagnosed with HELLP, treatment usually means delivery.

If a woman is less than 34 weeks pregnant, doctors may try various ways to manage the condition to postpone delivery, even if it's just for a couple of days. These include administering magnesium to help prevent seizures, using corticosteroids to help the baby's lungs develop more quickly, putting the patient on bed rest, doing blood transfusions if necessary and more, according to the American Pregnancy Association. Patients may also require blood pressure medication, sometimes even after the baby is born.

If a patient is more than 34 weeks pregnant, immediate delivery is recommended.

Can HELLP cause permanent liver damage?

It's unlikely to, as HELLP is a temporary condition, Martin said. But in advanced stages, it is possible for microhemorrhages to lead to a liver hematoma or even a liver rupture, which could cause someone to lose part of her liver function, Martin said.

But that's rare, and most of the effects of HELLP will disappear shortly after delivery.

What can women do to prevent HELLP from happening in the first place?

Unfortunately, there's no way to completely prevent HELLP from occurring. But it's always a good idea to make sure your weight and blood pressure are healthy. And knowing the signs and symptoms and trusting your gut when it comes to how you feel is important, too.

"A woman knows her body better than everybody," Martin said. "And she knows what is normal in her life as far as her health is concerned. Even through pregnancy, she adapts to changes and gets to know what's probably OK."

Women like Tagalk and Dill are sharing their stories to help raise awareness of the condition.

Tagalk believes her son's death could have been prevented had her doctor paid more attention to her symptoms, and had she known about HELLP.

"I didn't even know the signs and symptoms. I thought, 'Oh, I'm swollen, I must just be getting swollen earlier in pregnancy than other women. Oh, I have a cold, I must just have a cold that won't go away.' So I feel like it's really important that women know what to look for and aren't just in the dark."