HELLP! Often misdiagnosed syndrome can threaten life of expectant mother, baby

Nichole Nilson had a killer headache and severe abdominal pain 32 weeks into a "wonderful" pregnancy and was told it was probably her gallbladder acting up. When AnneMarie Pilkington developed what could be signs of toxemia, her doctor told her the condition never occurs in a second pregnancy and not to worry so much. Dana Tracy's "perfect" pregnancy came to a screeching halt when abdominal pain became uncontrollable. After being checked for gall stones, she went home to suffer for two more days.

Nathan Hodgson made two trips to the drug store to pick up increasingly powerful indigestion remedies for his pregnant wife, Ellen, just days before her baby was due, again after an uneventful pregnancy.

Tammy Thunell was told her swollen hands and feet were normal.

Eventually, each woman was diagnosed with a syndrome that's a subset of preeclampsia, a medical emergency that can be solved only by delivering the baby.

It's called HELLP syndrome, a nickname coined by Dr. Louis Weinstein in 1982 because of its characteristics. The letters stand for Hemolysis, which is the breakdown of red blood cells, Elevated Liver enzymes and Low Platelet count, which negatively affects blood clotting.

Despite the moniker, it's anything but helpful. It can pose a life-and-death emergency for baby and mom, regardless of when it occurs in the pregnancy. And although some practitioners say it may be possible to delay up to 72 hours to allow very premature babies to gain lung-building benefit from steroids, prompt delivery is a must. So HELLP babies are sometimes very premature and sometimes full-term.

"It's nice if the baby is older than 30 weeks (gestation)," says retired Dr. Anthon E. Anderson, who treated many cases of HELLP during his 31 years as an OB/GYN, "but whenever it happens, you have to act."

Pilkington was worried because she'd seen firsthand the dangers of preeclampsia and HELLP. When her sister, Cindy Wagstaff, was 28 weeks pregnant, she went to the ER with a severe migraine. Even though a few hours later she had an emergency C-section, she nearly died. And her son, Stephen, who weighed only 1 pound 14 ounces at birth, was in the intensive care unit for three months and developed cerebral palsy from a blood clot. Later, Wagstaff had two more children and two more cases of HELLP, although early intervention spared those babies any long-term effects. Pilkington knew it could happen in a second pregnancy or in an even later pregnancy. She changed doctors.

The list of misdiagnoses is long. Women have also been told they have gastritis, disseminated intravascular coagulation, acute hepatitis and even flu.

Ellen Hodgson never had the classic symptoms of elevated blood pressure and swelling. Still, she needed an emergency C-section. Daughter Peri arrived in December 1998, fully developed and healthy. Hodgson has had two babies since, both healthy, with no sign of the syndrome, she says, although they were deliberately taken a week early to avoid late-onset HELLP.

Comments