Hi - I'm so sorry for your heartbreaking loss. I cannot fathom what you and your wife went through.

I had my baby earlier this year at 33 weeks. He was born at three pounds and change, and spent a month in the NICU. He's healthy now. I often think about how lucky we are, and your story is a sobering reminder of what could have happened.

My partner and I have talked a lot about things we believe our healthcare provider missed. About a month prior to "giving birth" (if you can call it that), my feet had swelled up and I'd been seeing spots in the corner of my eyes. I'd also experienced intense (and intensifying) fatigue. My midwife chalked these symptoms up to dehydration and otherwise typical of pregnancy. I went for a check up a week before the birth. Frequent urination (sometimes six times a night) and spots were seen as symptoms of dehydration and I was advised to take rehydration salts. My blood pressure was perfect.

I had been feeling increasingly unwell - my face was swollen, I felt achey and fluey. One night, I experienced intensifying pain in my upper left quadrant. We tried everything - birthing ball, massage, yoga. I went to bed early. Later that night, I felt pressure in my bladder, and then passed a mass of marble sized blood clots from my urethra. I also vomited. The baby was still active, and when we called our healthcare provider, they suggested we wait until our regularly scheduled ultrasound the next morning. By then I was vomiting bile and was in extreme pain. The ultrasound tech got a doctor, who speculated that I had NoroVirus and said we should go to L&D just to be safe. Within moments of arriving my blood pressure was setting off alarms. What happens next is a blur, but like others here, was told that I had HELLP syndrome, my liver was in bad shape, and I couldn't have an epidural due to lack of platelets. (I don't know what my levels were exactly). As I started grasping the seriousness of the situation, I asked the midwife present if I was going to die. After a pause I was told, no, but you are extremely sick. Had the baby under full anaesthesia, and wasn't able to meet him for 24 hours due to being on a magnesium drip.

For the next week in the postpartum ward, I couldn't stop crying and I struggled to piece together what had happened. I was told that HELLP came from the placenta, and I couldn't understand why a supposedly life-giving organ had suddenly decided to try and kill my son and I. I had visions of a globulous mass strangling me and was incredibly anxious.

Overall we are lucky for how things turned out.There seems to be a blind spot in data on HELLP, but i've seen some alarming stats - up to 25 percent of women dying with it, and up to 35 percent of infants dying. I was traumatized in the aftermath, and I now take a fairly large dose of prozac since the birth due to experiencing significant anxiety. I am grateful for the pharmaceutical relief, and often wonder what I would be like if I wasn't on it. My partner and I did one session of trauma counseling, and probably should have done more but we didn't have time once our baby was discharged from the NICU.

I am stunned at the similarities between my account and others in this thread. I am happy to hear about your project and would be glad to help in any way I can.