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Surviving the Syndrome

Rare Condition, HELLP, Requires Fast Treatment

By Jenn Director Knudsen

Becka's sister, Shoshana, born seven years later, also had to be delivered early, as Rubinstein again developed HELLP. This time, though, the syndrome didn't come on until the 36th week, and her second child fared much better. Shoshana, born at 5 pounds, required NICU care for only five days.

Rubinstein says her years as a victim and then a survivor of HELLP were frustrated by the fact so little information existed outside medical journals. She tried to educate herself as best she could, but found it no easy task.

Bohach, Taylor Hope's mother, says in 1995 when she and her husband, Steve, 41, scoured everything they could get their hands on about HELLP, very little was out there. "Nothing was mentioned in most resources for pregnant women," says Bohach, who lives in Bellaire, Ohio. "The most we could find was a paragraph here and there in medical books. There was no major organization or Web site for families to contact and learn information about HELLP."

The condition itself wasn't even named or identified as its own syndrome until 1982. In October 1995, the Bohachs and Jennifer's mother, Judy Pyle, co-founded the HELLP Syndrome Society Inc. (http://hometown.aol.com/HELLP1995/index.html), a nonprofit corporation based in West Virginia, where HELLP research is being conducted at the West Virginia University School of Medicine.

The society's main goals include educating the public about HELLP, raising funds for researching the cause and treatment of the condition and providing support for families touched by the syndrome, Bohach says.

"Most women do not even know of HELLP until they have been diagnosed with it," she says. "A woman should never settle for 'You're just pregnant' as the answer to her symptoms."

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• Talk about it!

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