This is the first news article I have ever seen on the illness that had me giving birth to a two-months-premature Ethan:
HELLP Syndrome is a little- known pregnancy-related disease that, if left untreated, can be life-threatening for both the mother and the fetus. HELLP stands for hemolysis, elevated liver enzyme levels and a low blood platelet count. It was not even coined until 1982, when researchers documented a recurring pattern of these three symptoms in pregnant women. In these patients, the body starts destroying red blood cells, liver functions go awry, and blood platelets essential for clotting plunge to dangerous levels.
HELLP Syndrome is classified as a more serious version of preeclampsia, and is a disease that sounds like regular pregnancy complaints that goes largely undetected by doctors due to being so unknown. The only cure for mom and baby is to give birth within three days, if that. My experience, being a pregnant teenager on Medicaid, ended up being near disastrous, in part because the doctors refused to do any tests and sent me home from the hospital three times in three days with instructions to drink some Maalox and stop being such a hypochondriac. Apparently this experience isn’t so unusual. For one, it happened to my sister, a married, monied professional, at a major birthing facility in Atlanta in the mid ’90s.
“If HELLP gets well advanced and it’s not managed well, it can lead to multi-organ failure” and even death, said Dr. James Martin, director of the division of maternal-fetal medicine and chief of obstetrics for the Wiser Hospital for Women and Infants at the University of Mississippi Medical Center.
While only 1 to 3 percent of HELLP patients die each year, 25 percent of all such patients suffer serious complications like fluid in the lungs, kidney failure and liver rupture — often as a result of delayed treatment or a misdiagnosis. Recent studies also suggest that women may be at increased risk for cardiovascular disease.
“We don’t understand the disease or how to prevent it,” said Dr. James Roberts, vice chairman for research in the department of obstetrics, gynecology and reproductive sciences at the University of Pittsburgh School of Medicine, and director of Magee-Women’s Research Institute. “The only way to help the woman is to deliver the baby.”
The good news: the last time I did any research, the stats were so all over the board that they estimated maternal death anywhere between 3-20%. I’ll take 1-3%, thanks.
After the whole ordeal, including a week-long stay in the hospital for me and a two-week stay for the wee one, I was told that I would probably have liver and kidney problems for as much as a decade after Ethan was born, as well as a lifelong tendency for anemia. Because HELLP is not a genetic disease, I am at a higher risk of getting it again in part because of my older sister’s experience (don’t ask me how that logic works, ask the OB-GYN that informed me). Additionally, as the doctor told me, my own death must be part of that consideration. Having more children in the future will be a major risk, should I decide to do so, and a choice that must be planned very carefully in advance — hence my selfish obsession with reproductive health rights and accessibility. I don’t want to go dying on anybody, especially the child I have.