On April 14, West Suburban Medical Center (WSMC) in the Chicago suburb of Oak Park, Ill., hosted a unique seminar for nurses eager to learn more about HELLP syndrome. The program's format combined two different patient perspectives with that of Maternal Fetal Medicine expert Dr. Judith Hibbard, a nationally recognized board certified clinician and researcher with expertise in high quality, cutting edge perinatal care. She is a Professor and Director of the Division of Maternal-Fetal Medicine at the University of Illinois-Chicago where she is also Co-Director of the University's Perinatal Center.
Accompanying Hibbard were HELLP survivors Johanna Aiken and Jill Siegel. The personal accounts of the births of their daughters were interspersed with medical information from Dr. Hibbard about what was happening to them at the time.
Aiken gave birth to her daughter Macy in 2003 near term but was diagnosed with HELLP syndrome thanks to the diligence of her admitting nurse who noticed high blood pressure and pitting edema and sent an extra vial of blood to the lab in order to test for HELLP. Siegel gave birth to her daughter at 29 weeks gestation after repeated 24-hour urine tests revealed elevated protein in her urine. A trip to the doctor to check her blood pressure resulted in her immediate admittance to the hospital. Within two-and-a-half days, Siegel became much sicker and delivered her 2 lb, 9 oz daughter, Brooklyn, by emergency c-section. While Aiken's HELLP syndrome resolved within a few days, she suffered visual disturbances post-partum and was unable to be with her daughter alone. Siegel also lost her vision post-partum, but her recovery was prolonged as her blood pressure continued to rise after delivery upon which the diagnosis of HELLP syndrome was made. She suffered a stroke and multiple organ failure that would result in a 93-day hospital stay.
Hibbard was able to illuminate the personal patient recollections with medical information that helped the nurses more clearly understand the impact that symptoms of their patients may be having on their pregnancies. She pointed out that there is evidence that there are angiogenic factors in the placenta that change five or six weeks before an expectant mother becomes sick but that there is still great difficulty in diagnosing HELLP because it can present itself similarly to acute fatty liver of pregnancy, acute pancreatitis, gall bladder attack, and a host of other conditions. Lab tests can sometimes provide confusing results. As a result, Hibbard recommends "over diagnosis" and careful timing of the delivery to ensure the best outcomes for mother and baby. She shared a flow chart with the nurses as a recommended guide of how to treat the patient based on the length of her pregnancy. Nurses can use this as they support the treating doctor whose job is to figure out the rate of progression of the disease.
From Hibbard's perspective, Aiken's edema signaled intravascular volume depletion and interstitial volume increases. Visual disturbances that both Aiken and Siegel experienced were likely a result of cortical blindness, the total or partial loss of vision in a normal-appearing eye caused by damage to the visual area in the brain's occipital cortex. Patients have no vision but the response of the pupil to light is intact (as the reflex does not involve the cortex).
Cerebral vasospasm, or the narrowing of a brain blood vessel due to overcontraction of the vessel wall - a state that is similar to a tightly clenched fist - associated with HELLP syndrome, may account for the fact that Siegel has no recollection of much of her hospital stay a day or so after being admitted until she awoke from a coma nine days after delivery.
Hibbard also explained how relatively new the HELLP (Hemolysis, Elevated Liver enzymes, and Low Platelets) variant of preeclampsia is; the term was coined by Dr. Louis Weinstein in 1982 based on his study of 29 cases of severe preeclampsia-eclampsia complicated by thrombocytopenia, abnormal peripheral smear, and abnormal liver function tests. She also reported that most accounts of morbidity occur on the first day post-partum. For those who do survive, Hibbard pointed out the sobering statistics of the long-term impact of HELLP: 32% experiencing depression, 33% new onset hypertension, 26% anxiety, and 19% marital problems/divorce, commenting that the hope is that by sharing this knowledge the nurses may be able to help warn their patients so that they "can work out their troubles and what they were dealt."