The biggest thing I want to share with other pregnant women & their families is that you need to trust yourself. You know when something is not right with your body & you need to advocate for yourself & your baby even if you are initially dismissed by a healthcare professional. Be persistent. As a nurse I know the importance of listening to a patient & their family's concerns because they know themselves & when something is wrong.
This is my HELLP story.
I developed pain around my waist at about 32 weeks gestation. Initially, I thought maybe I was having heartburn, I took a tums & eventually went to sleep the next morning the pain was gone & I took it easy that weekend. I went to work on Tuesday that week and was fine until later in my shift the pain returned. I felt as if I was being strangled around my waist & I remember saying "Is this normal pregnancy stretching abdominal pain?Am I just being a baby?" I had been working on my feet all day that day. I called my ob's office because of my concern. They sent me into the birthing triage unit. They were focused on ruling me out for preterm labor, but did not seem to be concerned with finding any other reason for my abdominal pain. My blood pressure was normal at rest. A urine sample was normal & showed no protein.
I was instructed to go home & take it easy the next day, but no restrictions & I could continue working full time as a nurse. That night when I got home my abdominal pain continued to get worse (I should have went to the ER) & I vommited bile because the pain was so severe. I called my OB office first thing that morning (I never had an actual physician, just saw whoever in the group was available, which I wish I had a specific physician to take responsibility for my care in hindsight) the nurse told me "you were seen at birthing triage last night, so we do not think what your experiencing is baby related & there is nothing we can do for you. You can go see your primary care physician if you want, sorry." I thought it was actually reassuring that they didn't think it was baby related. I thought well maybe it's my gallbladder because I had increased my intake of fatty foods because I had been measuring small & had only gained about 13 pounds at 32 weeks.
I saw my primary physician that day & they were surprised my OB's office sent me to them, but the nurse practitioner was great & took labs for liver function tests & told me they would do a gallbladder ultrasound if the pain continued the next week, but if the next day the pain was better & I felt okay then I could go to work. The next morning the pain was gone & I felt like I could work, so I went. One of my favorite nurse practitioners was on that day & I told her what I had been experiencing. She took my blood pressure after I had been up & about & it was 150/90. She told me to call for the results of my lab tests & I did. Initially, they would not give me my results because the nurse practitioner I saw the day before was not working that day, but I pushed them to have someone else give me my results because I was 8 months pregnant & needed to know.
My liver function tests were slightly elevated. I called my OB office to let them know & they said I could go back to birthing triage. I left work early & went there. The nurse was on who, I had seen the first time I had gone & she said "what are you doing back here" I said, "I know it's probably me just worrying, but I need to make sure" They hooked me back up to the monitor, my blood pressure was just slightly elevated. They checked labs including a CBC this time.
My son was born at 4lbs 3 ounces 16 inches. He was incubated the first night. He spent 5 days in the NICU & 3 weeks in the special care nursery. He required 2 surgeries from hernias secondary to his prematurity, but otherwise is completely healthy & absolutely wonderful. He is amazing & I feel so blessed everyday I get to spend with him because I know how very easily things could Be different. I feel so deeply for all the families who have lost a baby or mother to this syndrome. Even as a nurse, I dismissed my own concerns after speaking with experts in pregnancy & if I didn't work in healthcare or did not have as much support as I did, I probably would not be here today. As a pregnant woman especially in your first pregnancy you may not know what is "normal" because everyone is so different, but trust yourself when something isn't quite right. I knew & said to my mother-in-law at 30 weeks, I don't think my baby, Liam, is happy in there, I think he wants out" I just knew, but when I had symptoms I just chalked it up to other things & thought I was being ridiculous (and I was for not trusting myself). This disease can progress so quickly you don't have time to delay & it may take time for labs to show something so be persistent & listen to your body & self. Once I was diagnosed, my son & I received wonderful care & am so lucky for the team who cared for us. Be aware that diagnosed is tricky due to lack of information about the syndrome & you may not have the current text-book symptoms.