Let's Talk about HELLP

            In general, it’s true that you can’t spend your life wondering, “what if?” But… what if you could?
            My experience with Pre-Eclampsia and HELLP Syndrome was much similar to that of other women: completely uneducated. My experience was different than that of other women in that both my daughter and I survived, more or less without harm.

            HELLP is an extremely rare variance of Preeclampsia that can happen with or without previously occurring Preeclampsia symptoms. It stands for Hemolysis (the breakdown of red blood cells), Elevated Liver function, Low Platelets. Since it more often than not occurs in concurrence with Preeclampsia, doctors don’t generally do a blood test unless there are other non-HELLP preeclamptic symptoms occurring. There are no risk factors, no known causes, no known reason for this complication to occur. Of the women who develop HELLP, more have Preeclampsia than not. More have Gestational Diabetes than not. More are Caucasian than not. More are over the age of 30 than not. And yet within those categories, there is no increased risk of developing HELLP, since it is still so rare. And any link between those categories and the occurrence of HELLP is completely unknown.

            HELLP Syndrome can happen anytime during pregnancy up until 72 hours after delivery. The onset is generally sudden, and symptoms severe. HELLP Syndrome was identified by Dr. Louis Weinstein in 1982. Prior to 1982, HELLP was a silent killer. You know in all those old books and movies, when a character would ask about someone’s mother, and be told “oh, she died in childbirth…?” HELLP. Seizures, bleeding to death, a shut-down liver. Dead. Oftentimes both mother and baby, in a matter of hours. The warning signs often include “feeling kinda weird.” The only cure is delivery.

 

            What if my husband and I had been driving TO vacation instead of back home? I probably would have had a seizure in the middle of a lake in New Hampshire.

            What if I had just gone to sleep when we got home?

            What if I had continued arguing with my husband about going to the hospital?

            What if the nurses and doctor had trusted their instincts that I was suffering from “food poisoning?”

            What if my blood pressure hadn’t been SLIGHTLY elevated due to stress, encouraging my doctor to order a blood test?

            What if I didn’t live near Boston, which is home to many of the smartest doctors on EARTH? What if I had to stay with my hometown OB, who had never heard of HELLP and was still using the outdated term “toxemia?”

            What if I had developed HELLP when I was 22 weeks pregnant, instead of 38? What if my daughter hadn’t been ready?

           

            My husband, daughter, and I are beyond blessed to exist as an entire family. I thank God every day for my daughter’s life and mine. I spent the first several months post-partum adjusting to being a mother and trying to forget all the pain and horror and terror that I went through in the 36 hours before my daughter was born. But now, as life has settled down a bit (or I’ve just gotten used to the madness of having a small child!), I’m realizing that it would be irresponsible and potentially murderous for me to “forget” and remain silent. If I am capable of helping someone and fail to do so, I have failed as a mother and as a human being.

            I had never heard of HELLP syndrome throughout my entire pregnancy. I read all the pregnancy books, and I obsessively scoured all the pregnancy websites, yet saw nothing about this horrible killer. Even information about Preeclampsia was rare—it’s as if doctors don’t put the information out there so as not to scare the hypochondriacs. After all, it IS rare. But what about those of us who actually get the sickness? Don’t we deserve to have some knowledge before potential sudden death?

            I’m not going to forget, and I’m not going to stop talking about it. I’m going to bug my doctors, and remind them to educate themselves as well as their patients. I’m going to talk about HELLP syndrome to every single person I can, for as long as I can.