How can you know the symptoms, if you don’t even know the condition exists?

In 2009, I wrote an article for Mamamia that reflected my own personal struggles with expanding my family. My husband, Lee and I, were parents to our daughter, Bethany (born in 2004) and were desperate for another. No one could ever have imagined the sequence of events that would soon follow….

I could have screamed it from the rooftops! I was pregnant and all was progressing well. I had this feeling that everything would be okay, so much so that I blurted it out to friends and family at only 6 weeks!

I wasn’t concerned about my pregnancy or health until I reached week 27 when I began to experience upper right quadrant pain that was so painful that it would radiate around my entire waistline. It was soon discovered that our baby’s growth was 2 weeks behind and this was due to my placenta failing. Doctors were also pondering over why I was experiencing the strange pain and suggested I may have HELLP syndrome, yet they were not completely convinced. They opted to keep me under close observation and predicted that our baby would be born around 35 weeks. In the meantime, I was given steroid injections in an attempt to assist my baby’s lung development and was booked for a specialised ultrasound and further tests at a major hospital over 100km from home.

On the 9^th January 2013, Lee and I set off to Melbourne for my appointment and subsequent tests. Upon arriving home that evening, an obstetrician called and announced that I would need to return to the hospital via ambulance as tests indicated that my baby needed to be born immediately. I was rushed back to Melbourne and was told that I had HELLP syndrome. My liver and kidneys were shutting down and I was at risk of having a seizure or stroke.

Just after midnight on the 10^th January 2013 at 30 weeks + 3 days, we welcomed our beautiful daughter, Ruby, weighing a tiny 1044 grams. I was not able to meet Ruby immediately as I was under a general anaesthetic for her birth and required considerable recovery time. When I did get to see her for the first time, I could not believe it. She was so small, her head only the size of a tennis ball. Her fragile body, almost translucent.

Delivering Ruby cured HELLP syndrome for me however, Ruby’s prematurity caused her many problems. Her lungs were underdeveloped despite the steroid injections. She was on CPAP for some time and low dose oxygen. Ruby also experienced bradycardias, tachycardias and apnoeas. We also had months of trying to teach her to feed orally so Ruby went home with a nasal-gastic tube inserted. She spent a total of 10 weeks in hospital.

Months later, in late 2013, I wanted to learn more about what happened to me. I finally had the time as Ruby’s medical appointments had begun to dwindle and I simply became less busy. During my research, I came across an extraordinary group of women, all survivors of HELLP syndrome. They showed me that there simply wasn’t much awareness out there of this severe pregnancy complication. People in my immediate circle certainly had no idea what HELLP syndrome was either. ‘Why?’ I asked myself.

My desire to spread the word kept growing, especially after hearing of women who tragically lost their babies, and of grandparents who were mourning their daughters whilst helping raise their grandchildren. Not to forget my new group of friends and their stories of how HELLP syndrome impacted their lives. Questions kept coming to me; ‘how are women supposed to know the symptoms of HELLP if they don’t even know the condition exists?’

To spread the word about HELLP syndrome, I wrote a book, ‘Little Miracle’. The story is written as if a mother is reminiscing with her child. In essence, it’s a gentle way of explaining that, ‘hey, things were tough but we’re okay!’ The book is 100% not for profit and has the support of Australian Action on Pre-eclampsia (AAPEC).

Please help us in our fight against HELLP syndrome, watch our video or donate.  Visit us on Facebook.