There's a Scary Pregnancy Syndrome You Should Know About
by Rebekah Henderson
Photograph by Twenty20
Are you pregnant or planning on becoming pregnant? Have you heard of HELLP Syndrome? The acronym stands for H (hemolysis, which is the breaking down of red blood cells) EL (elevated liver enzymes) LP (low platelet count). Odds are you haven't, because it's rare, but it's also extremely dangerous to moms and babies.
HELLP syndrome is usually considered a variant of preeclampsia. Both conditions generally happen in later pregnancy and, sometimes, after childbirth. It's terrifying stuff for any mama-to- be but being educated on this commonly misdiagnosed syndrome could save you and your child's life.
Cristin W. is one such mother who almost lost both her and her baby's life because she had no idea that her symptoms were indicative of HELLP syndrome. A week or two before she became deathly ill she noticed that her back was hurting and that she had swelling in her ankles and feet. At her next doctor's appointment she mentioned her symptoms to her doctor and asked about preeclampsia. The doctor assured her that her protein levels were normal and that her blood pressure was good and to stay off the internet. Cristin felt a bit dizzy and sick when she left the doctor's office, but after eating and resting she felt better and chalked it up to pregnancy.
However the next day she felt what she thought was a large gas bubble under her ribs and in her back. She also had pain in her upper abdomen. Then she began throwing up. She convinced herself and her husband it was food poisoning and they went to bed. At 2 a.m. she became violently ill and her husband took her to the emergency room. What followed was the start of a terrible experience that would leave Cristin with PTSD and postpartum anxiety.
She was taken to labor and delivery immediately and informed they would need to deliver her baby that night, at 31 weeks. Cristin and her husband were in shock as they wheeled her into the operating room and delivered their little girl by C-section. She was then whisked away to the NICU. The nursing staff encouraged Cristin to pump milk even though it was making her blood pressure skyrocket.
Pregnant women don't need any added stress but we also need to trust our instincts and advocate for our health and that of our babies.
She kept up a pumping schedule of every two hours although she hardly produced any milk, which is very common with HELLP syndrome. Like all new mothers she wanted to do as much as she could for her baby but her blood pressure was so high she was often denied access to her daughter. When one of the nurses mentioned that her blood pressure medication was limited because she was pumping, Cristin decided to stop pumping and began to feel better within a few hours.
After starting the blood pressure medication she was able to leave the hospital seven days after her baby was born. Her daughter was given donor milk in the NICU, which was not offered until she had stopped pumping. It wasn't until almost two months later they were finally able to bring their baby girl home. Cristin suffered from anxiety for several months after bringing her home. The baby is almost a year old now and doing great, but not every mother and child are so lucky.
During pregnancy many women have the experience of worrying that something is wrong, particularly if they've experienced a prior pregnancy loss. Pregnancy message boards are full of questions that end with, "Should I call the doctor?" Women have long suffered in getting appropriate medical care due to gender bias in diagnosis and are far too often told their symptoms are psychosomatic or stress related.
Pregnant women don't need any added stress but we also need to trust our instincts and advocate for our health and that of our babies. If you feel like something is wrong, you shouldn't hesitate to call your doctor. A good doctor will listen to you and do their best to address your symptoms and allay your fears. What happened to Cristin probably could not have been prevented, due to how common it is to misdiagnose HELLP—which is why the syndrome has a global mortality rate of 25 percent. However, being aware of the symptoms can help pregnant women get diagnosed and treated as early as possible.
Please don't hesitate to contact your doctor if you have these symptoms or if you feel "off." One thing that Cristin realized afterwards was that although her blood pressure was in the normal range for her, it was actually high as her blood pressure has always been very low.
At the end of the day you know your body best, so make sure you listen to what it's trying to tell you—and never be afraid to speak up. We are our own best advocates after all.